# The 'New on Pump' thread!



## Patricia (Jun 10, 2009)

This is for everyone who has expressed interest in a running diary of the early days of pumping...

Yesterday my son began his awaited foray into pumping, after a week's saline. He's 13, type 1, diagnosed Nov 08. We've been lucky, with a cooperative PCT and keen GP and consultant, to get him through quickly. He's also very motivated, which seems to have helped us all along.

So far, so interesting! We had kept very good records of bgls and meals, carb counting, bolus units, etc, so were able to hit the ground running, receiving training on everything from all the parameters that need setting to dual and square waving. He's on a medtronic, and finding it simple to use. And I'll admit that he's come to grips with it hugely faster than I could have. It's like a mobile phone to him, whizzing through all the menus, etc...

Yesterday he started the day at the hospital on 17 because we were asked to skip his morning levermir dose. He instantly bolused a correction upon being hooked up (1 unit = 3 mmols sensitivity), and 45 mins later he was down to 9! He was then starving. They offered him a Hobnob. 8 g -- bolused for that: 0.9 units!

Half an hour later we'd gone to lunch. Panini, packaged, so tested (7.7 mmols by this point), 63 g carb. Bolus wizard worked it all out and bingo, in it goes.

Two hours later, he has a mild hypo, 3.8. Treat with glucose only, in half an hour up to 5 ish. Has hot choc, boluses with bgl inputted. Fights lows (no hypos) all afternoon, but is ECSTATIC with numbers, bless him. I feel the control is a little *too* tight for my comfort.

After speaking with our nurse last night, she agreed and changed one of his basal rates, asked us to track him through the night, and get back to her at 7am this morning, before his breakfast bolus. We did so: 5.7 before dinner, 5.7 2 hours after dinner, then at 12 am 4.5 (woke him up, gave snack, not bolused), 3 am he was at 6.6 (from snack no doubt) but this morning he was back on 3.9. Still too tight!

Our nurse's suggestion was to lower all basal rates (set at different times and rates over the day according to his patterns of rise and fall) by an increment, and to under-shoot his morning bolus while we waited for this to have an effect.

Morning text from E says: 17 at 9am (under two hours after breakfast, but still high. He corrected with wizard, which took into account active insulin from breakfast); 13 at 11am (he had snack with bolus wizard and correction).

He's going to be cross because he loved the low numbers. But to be honest, I'd rather approach it from this end, working down -- rather than always worrying about propping him up! Had some difficulty sleeping last night...

Question to ask DSN tonight: what level to you aim to 'go to bed on' with a pump? We completely forgot to ask that yesterday....

No doubt he will be 'tweaked' this evening. If yesterday is anything to go by though, by the time he gets home he will be right down where he's supposed to be, the magical bolus wizard having done its thing. The high numbers this morning are partly a deliberate under-bolus and partly quite a reining in of basal rates, no doubt.

But that's OKAY BY ME as I say. The young man had exams today on top of everything else, though he didn't seem even remotely fazed by the prospect....


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## Proudspirit (Jun 10, 2009)

Crikey you need a maths and science degree! I am type 2 and don't have all the worry that you have but i commend anyone who do this for their children, themselves and no doubt their parents. 

Very interesting reading. 

Julie x


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## Mand (Jun 10, 2009)

Thank you so much for this new thread, Patricia. I am so interested in everything you have said as we will be starting my son on his pump on 7th July.

Wow! It sounds like you are doing fantastically so far because i know that it is like starting all over again as insulin requirements are different on a pump.

Like you, i would prefer to start higher and work way down because it seems safer for him.

Well, I wish you continued success with the pump. I will be reading your posts with interest.

Thanks again and i hope your son gets the good exam results he deserves! He sounds like a star to me! 

ps. Patricia, Bev and all other interested parents - when my son starts on his pump, shall i have thread of my own or add my posts to this thread?


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## bev (Jun 10, 2009)

WOW! You make it sound so easy! The only thing i dont understand is the bolus wizard? Does that just work out insulin once the carbs have been entered? Sounds great. E is doing very well coping with all this and exams - he is a star! Also, if you are having a couple of snacks with 20 minutes or so apart - does it tell you how much insulin you still have left and then recalculate the new amount for the new snack? Sorry i know what i mean in my head i just have trouble expressing it!

Keep the diary coming as i know i will be reading it avidly. Als good question about how much to send him to bed on with a pump - is it different? Bev


Mand, i would suggest you do a seperate thread as it could get very complicated - and selfishly i prefer to read them seperately! Also, it would be good to compare the two boys results etc..(if you dont mind that is!) Bev


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## Mand (Jun 10, 2009)

Ok, Bev. Good idea, I will do my own thread.


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## Patricia (Jun 10, 2009)

Somehow I lost my last response, argh! 

Yes Bev bolus wizard works out everything: dose once carb is entered (before meal with bgl too, so can correct etc). Wizard also takes active insulin into account, so snacks are bolused but not overdosed....

All sorts of parameters are set according to the history: so E's max bolus is 14 units, which means that he can't have more than 14 units active at once, nor can he take more than 14 at one go. His active insulin time is 4 hours, though usually 5 hours is the start point. This is something the saline trial showed -- that we needed to lower this parameter for him, because of his eating and needing corrections, etc...It's also about how you process insulin...His sensitivity is 1 unit = 3 mmols, again from his history, though this does seem a very changeable figure with him depending on his start level and time of day...

The bolus wizard also has the dual and square wave functions, which we are really looking forward to using for dosing pasta, rice and pizza (dual: a hit of insulin first, majority to follow x hours later, to be determined through experience) and porridge (slow even release over x hours).

Just heard from him: he's giving tiny corrections with every blood test, every two hours (determined by wizard). Clearly the basal will  need raising in places again!


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## Patricia (Jun 10, 2009)

Update this evening is that the morning (8 am - 12 pm) basal is raised -- this is because even though we under dosed breakfast bolus, he still went a bit higher than expected...to his credit, he pegged it back all day gradually, using wizard corrections, to where since lunch he's been stable, 5-8mmols. 

Advice on bedtime levels is: this week, while stabilising, give carb without bolus until sticking around 7 mmols or higher. But when stabilised, okay to go to bed on 5 or 6. This is because the basal with pumps is STAGGERINGLY even and predictable. I mean, the difference is incredible. It's hard to explain. But there's such a feeling of 'ground' to this now, rather than up and down with each levermir injection...Three times in two days now the pre-meal bgl has ended up the SAME as the 2 hour post bolus meal bgl. Amazing.

The whole system also makes fundamental sense to me/us. The variables are understandable, and instantly adjustable. There's guess work, yes, and lots of experimentation to be done over foods. But something feels more transparent, which is comforting.


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## grahams mum (Jun 10, 2009)

can i askyou how can you carb counting with a child when one hour is very hungry  and maybe after does not wont anything  maybe only some milk


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## bev (Jun 10, 2009)

Hi Grahams mum, do you mean what do you do if Graham doesnt want to eat all the food you give him - after you have carb counted it and injected him? Bev


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## bev (Jun 10, 2009)

Patricia, it sounds like you have it sussed already! Is it ok for me to say i am a little bit jealous? lol. Seriously, i cant wait for the day Alex is on a pump! At the moment he is high all through the night - so i have just split the levemir to try to sort that out - but it seems so pathetic compared to how easy it is to adjust  on a pump! Keep the diary going - its very interesting and i am lapping it all up! Thanks.  Bev


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## grahams mum (Jun 10, 2009)

usually if is really tired i give him some milk with dissolvable biscuits in it


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## Patricia (Jun 10, 2009)

Sorry Grahams mum, I'm a little confused. Is this trying to 'chase' his insulin dose? how old is he? Maybe there are some clever solutions according to age. My son is 13, so quite capable of judging how hungry he is generally -- except that at the moment, he is literally hungry all the time, so the pump is a godsend. Case in point: after dinner, decides he's still actually quite hungry (after new pots, salmon and asparagus!), so has a mini victoria sponge and strawbs and cream, boluses it all. Still just 6.6 before bed. I'm telling you, it's just a completely different story!

Bev, I'd be jealous if I were reading me. Quickly may the day come for Alex. As Katie (?) said on another thread, the real bore is all the constant carb counting. But at least with the pump there is in-built accuracy for all that trouble. It is hugely more sensitive. Short of a cure, the pump is a step closer to a less regimented life. Even tonight, downstairs for dinner, E suddenly said: I don't have to inject. (High five time for all.)

The pump is not a panacea. And I'm sure we'll be itching for the next thing in six months. But for the moment, the quality of life difference is sort of shocking.


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## Patricia (Jun 10, 2009)

Bev, what's Alex's level in the morning? If he's high, then maybe whether splitting or not the lev needs raising? On MDI, E's split was quite a ways off even: it was 12 evening, 9 morning. Doesn't high at night always mean more levermir? On a split dose then, you can lower the daytime if he's going too low in waking hours....

Hmm. But yes, the adjustments on the pump are much more fine. We are adjusting 0.05/hour increments at the moment to different basal levels. And there five basal levels set for one day!


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## grahams mum (Jun 10, 2009)

graham is 5 and he maybe say in the car  after school is really hungry  put the ingredient together and is coming out oh i only want some baked beans  and if he is to tired fall a sleep on the sofa especially PE  days


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## Patricia (Jun 10, 2009)

Oh dear. I think it's possible at times like this to inject after eating...I remember our DSN saying that sometimes that's all you can do with young ones sometimes. Then at least you are injecting for the food eaten, not what you thought he was going to eat.

How stressful for you. I'm wondering if this is worth putting up on a separate thread, to see how others have dealt either with their children or with themselves?

Also, I'm thinking that childrenwithdiabetes.com (uk) may be able to help you enormously. do you know the group? A bunch of really clued up parents, with lots of experience, email group...


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## grahams mum (Jun 10, 2009)

i know the other site but this is MUCH BETTER!!!!!


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## bev (Jun 10, 2009)

Patricia,
Alex seems ok on most of his ratios in the day - but later in the day his levels start rising. So he can go to bed on 8 or 9 and then at 11pm he can be 22!!!
Then in the morning he can wake up anywhere between 13 and 22!

So tonight i have given him half his levemir and will give him the rest in the morning - so hopefully it will stop the highs at night. It seems the levemir was running out before its 24 hours. Also increasing his levemir in not an option as he just hypo's all day then!

Having said all that - do you think i will need to alter his novorapid for any reason? I have assumed its ok to keep the same ratios etc? Thanks. Bev


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## Patricia (Jun 10, 2009)

Hi Bev

I'm guessing his morning and evening boluses (raising morning ratio, lowering evening) might need adjusting in the long run -- I seem to remember doing this when we split E's levermir. But you have a day for things to settle, before Alex is on a 'full' dose of lev. See where he is day after tomorrow morning -- if under 7, I would look at ratio. If still  high ish, wouldn't bother as will just confuse things. Getting the basal right first is the key. The ratios I think then naturally follow?

I find the trial and error of this all one of the worst things. Like -- I know, let's *see* if he has a hypo. Yes? Time to adjust. *Such* a shame that we can't predict it, and protect them from it all.

Anyway, you may find that you will need to skew the split, as I say. Hopefully the split dose will at least solve the daytime hypos... You can always add more to the evening dose if you need to, pull back on the day (in which case, of course, the ratios need looking at again when things settle! Sigh.).

Grahamsmum -- I find this site easier to manage anyway, I must confess.

Bev, you've been thinking about splitting for a while, haven't you? Hope it works out. We never got to the really high morning levels with the single dose lev, but certainly noticed the evening rise. Splitting the lev pretty much solved it. Fingers crossed for you.


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## Mand (Jun 11, 2009)

Gosh Patricia, it all sounds amazing! It's just great that you are doing so well already! I am reading your posts with huge enthusiasm!

I do so hope that we have the same success as you because my sons levels are not great at the moment and he is so fed up with injections. 

Anyway, I am delighted for you (and jealous! Hehe! ) but hopefully will be in the same boat as you soon.

Bev, you are not alone, my son's levels can be like Alex's at times. It is all so exhausting. Personally, I am hoping the pump sorts him out, like Patricia's son.

Can I just take this opportunity to say how less lonely I feel about caring for my son's diabetes now that i have found this forum and all of you.


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## Northerner (Jun 11, 2009)

Excellent thread, Patricia, thank you for doing this you will be providing enormous help and comfort to many, many people! 

My control is generally pretty good (last HbA1c 5.3%), but I do like the idea that I could 'bolus for a biscuit'! Sounds like a marketing catchphrase! How is E feeling about wearing the pump all the time? Just wondering if the successes with the levels are overriding any discomfort he might be feeling, or has he got used to it already?


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## Patricia (Jun 11, 2009)

Morning all.

Great night: 6.6 at bedtime, so had some milk and (no carb) sausages just to top up a little to 7 ish as per advice. 12am reading was 7.2, 3am reading was 7.4, and this morning woke up with 7.2...quite amazing. It's the steadiness of the level which is like some kind of miracle. I'm sure it can't be like this all the time, what with exercise and illness and growth factors coming in to play...

And I haven't even mentioned the *time* saved. He's got ten extra minutes in the morning because of no lev, no novo! No fuss! We've barely sat down to eat our breakfast and he's up having finished, on his way...

Northerner, there has been absolutely no discomfort. None. When it first goes in, he says that for him it hurts less than an injection, then it does sting a little for a few mins (team say this is the 'foreign object' response) -- then nothing. Not even when the pump has dropped off him and dangled there, hanging by the cannula! There's a little bit of faff with how to clip it -- where, etc, but so far he's trundled downstairs with it hooked on his pjs, in his top pocket temporarily, in his school trousers (keyboard locked), on his  waistband, in his lap while sitting...I suspect it's much more inconvenient for girls/women, but there are garter belts and things to make life easier...

I can well imagine that for you a bolus for a biscuit would be *such* an appeal! You seem to like to fiddle, tiny adjustments, and this is what E also enjoys so far. I'd guess that he's already feeling more in control somehow, like he can track things with less effort. What's interesting to me is that yesterday, when he started high for various reasons, he just took it upon himself to do tiny corrections up until lunchtime when he no longer needed to. We did not make the suggestion that he do it -- but he understands and trusts the system so implicitly (and understands his own needs, perhaps?), that he just hauled off and did it while at school (the first day, and during exams! eek). So there *must* be a real sense of what you do having *an effect* -- which again I can only guess is so liberating...


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## Steff (Jun 11, 2009)

all sounds really positive bet you and son feel brill


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## bev (Jun 11, 2009)

Morning all!

Patricia, those levels are brilliant! It does seem from reading things on the other site i am on that its fairly common to get these levels all the time - of course the odd 'blip' due to some unexplained reason or uplanned exercise etc - but there doesnt seem to be the same unpredictability that MDI seems to have on children ( i know that some children/adults tick over very nicely on MDI). You must be very proud of E's aility to make good choices? I know i am proud of Alex when he uses his knowledge at lunchtime and either adds a correction or reduces if he is running low etc..I think our children are amazing - other children have the 'normal' worries of getting to school on time and remembering their homework etc..Our children have so much more to think about and seem to take it in their stride dont they?

Anyway, keep the diary coming i am loving reading it. Although it does make me feel more desperate to get Alex on the pump!

Mand, and all other mum's/carers, I too think this site is amazing and i have found so much advice and knowledge on here that i dont know what i would have done - especially as i ring our DSN and wait daaaaaayyysss for her to reply sometimes! I am sure that at one stage or another we will all be of help to each other, so GOOD MORNING to all you carers/parents out there! If anyone is lurking in the background - dont be shy,come and join us!Bev


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## insulinaddict09 (Jun 11, 2009)

Hi Patricia ... I am so pleased for you both , those levels are fantastic by the way !!


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## Patricia (Jun 11, 2009)

Thanks all...And I forgot to say something else -- that in theory the night levels can be even better, because once the basal is set, you can go through on 5/6 rather than 7 without worry. It suddenly becomes clear to me how this is possible -- because it's so even!

Glad to know bev that these numbers aren't some kind of glitch and will end! I think you must be right. But it feels a little too good to be true at the moment! I understand that life isn't like this always, etc -- but just to know it's possible, after only two days, gives me renewed hope. If we can make so much progress in terms of numbers and confidence in two days, then I feel we will usually be able to do so in the future.

I must doff my cap to our wonderful team, who are responding very quickly and with unmatched expertise. We are not abandoned here to get on with it. We are in very close contact. Already though we can see  couple of times of day where an earlier or later start in the change of basal may be worth a try -- and presumably in time we will make these tweaks rather than clearing everything with the DSN. This is as it should be. But they are giving us confidence.

Bev, yes. Our children are amazing. I've moved from a place where I was cursing my stars, to one where I am more than a little thankful for what we have. In our children, and in our resources. My beautiful son would not be alive if it weren't for circumstance. Everything is better than that, and is continuing to improve.

And everyone: yes. This site has propped me up many a time. I am always glad to keep checking in for support, a moan, or a laugh. Thank you!


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## bev (Jun 11, 2009)

Patricia, I have a 'stupid' question! How do you work out the initial basal amount? I know that only one insulin is used on a pump - but as your not using a 'slow acting' insulin - i cant imagine how you work it out? Bev


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## sofaraway (Jun 11, 2009)

Thankyou for this thread, it is very interesting reading. 

probably different teams work it in different ways but I know at my hospital that the basal dose being taken on MDI is used then a certain % (I think 10%) taken off and then divided by 24 hours. So a completley flat basal profile to begin with. they then make adjustments from there. 

I imagine that more expereinced teams will start people with some varied basal rates if it is already known when people need more and less basal.


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## Northerner (Jun 11, 2009)

This thread is of such great interest that I thought I'd 'stick' it for a while, if that's ok with you Patricia. That way it won't get 'lost' if we have a flurry of new threads.

There's a egular feature that they've started in the past couple of issues of 'Balance', but I have been very disappointed with it so far as it doesn't contain anywehre near as much good information as this!


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## Patricia (Jun 11, 2009)

Thanks all -- and Northerner! I wondered what all the guff at next to the thread was, now I know...!

Bev, like sofaraway says, the insulin is slow dripped in, but you usually need about 25% less via pump than injection (absorption, lack of pooling etc). The team take the long-acting doses on MDI and divide it up, I guess for some starting from an even dose throughout the day. However our team started immediately with five different rates of basal, really incremental (eg 0.75 units per hour for these four hours, 0.85 units per hour for the next four etc) -- I believe these initial rates are based on our records and their working out of E's patterns. So it's worth keeping records for a good start I reckon!

It takes about an hour for every change in basal to have an effect, so you can judge how to tweak I guess by anticipating what tends to happen next. 

btw, the Pumping Insulin book is pretty invaluable with all this too. We haven't looked at it since starting, but beforehand a lot about percentages of basal/bolus etc were helpful there.

re bolus ratios, we are starting back with standard 1:10 across the board. The times for the ratio application are ball-park, with breakfast starting at 7 am, lunch at 12.30 pm, dinner at 6 pm... this is all adjustable, and just gives a time frame during which a certain ratio needs to be applied. The initial standard 1:10 I'm sure is to allow basal to be set as well as possible, then tweak ratios from there. On MDI E's ratios were 1:8, 1:8, and 1:9, to give you an idea...

I'm now out the rest of the day doing nothing quite so interesting as all this! Well maybe. Teaching and giving a reading. Ciao for now. I'll check in asap!


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## Mand (Jun 11, 2009)

Hi Patricia

As always, thank you for your detailed and helpful posts. I cannot express enough how impressed i am that E's levels are so steady so soon! It gives me so much hope for my son.

I will await your further posts. They really are the hi-light of my day because they are so helpful and positive and give me (and I am sure everyone else) such hope of better things to come!

Thank you, thank you, thank you!


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## Mand (Jun 11, 2009)

Hi Patricia

It might be unfair of me to ask you this as you new to pump, so just ingore me if it is!

My son likes to inject after eating so he can eat to appetite. But if he is high before a meal i get him to inject before eating. With the pump, could he inject some insulin and then at the end of the meal inject the balance? We can't do this on injections as he would not want two injections for one meal!

Not had good bloods today, all day. I do not like days like these.


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## sofaraway (Jun 11, 2009)

Mand the answer to your question is yes. He could do a correction to lower the high and then bolus for the food afterwards.


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## grahams mum (Jun 11, 2009)

Mand said:


> Hi Patricia
> 
> It might be unfair of me to ask you this as you new to pump, so just ingore me if it is!
> 
> ...



 i do feel exatly like you


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## Mand (Jun 12, 2009)

Thank you Sofaraway!  That is excellent news! Roll on the 7th July when my son gets his pump! Can't come soon enough as control just not so good these days. We think it partly because he has come out of his honeymoon period so things gone rather down hill. Plus a bit of teenage attitude creeping in so he bit negative about his diabetes and all it entails at moment. Which, of course, i completely sympathise with him about. Anyway, hopefully the pump will make the difference i am hoping for!

Hi Grahams mom, how are things?


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## Patricia (Jun 12, 2009)

Will come back to all this at lunchtime I hope! In meeting all day...Still good numbers yesterday, but two hypos! Now adjusting ratios, will fill you all in asap...

Phew. O'night very steady as before though...


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## Patricia (Jun 12, 2009)

Yesterday all a bit of a haze as we are all over the place and exhausted...however, from what I can gather, all numbers yesterday were still under 8 (can you believe it!); however, hypo just before lunch (during which he sent a text saying he 'felt awful' -- very unusual). Also another hypo (third day in a row he's been low, though first two not hypo) just before dinner. Night numbers were very good, though he thinks a little high: 8.2 at 12am, 6.9 at 3am, and 8.1 at 7am. I'm sure we can peg this down a tad in time -- but so steady!

Changes made now are starting to include ratios and more importantly, *timing* of ratios and basal rates (eg because of 1.30pm hypo, lunchtime ratio -- which is higher than breakfast -- is coming into effect for 11am snack, as well as basal rate now tweaked to lower in time for midday. Also now lower basal rate for evening coming in at 4pm rather than 6pm, to try to prevent dip). We'll see the overall effect tonight.

What I *am* a little confused about though is how to know at what point ratios start needing tweaking, eg that basal's settled enough? Hmmm...will have to ask. We need to be able to make these decisions ourselves eventually, and I'd like to know sooner rather than later the markers for these decisions.

E going into town with a friend for the first time since diagnosis this evening. Although there is much more to physically go wrong (eg pump itself) -- I feel more confident generally, as he must too in order to decide to do it. If he wants to eat, he can bolus for it rather than risk the spike. (This *is* mediated though by the thought I have that he's walking into town, more exercise, what effect will this have? Etc! However we will just have to wait and see.)

Pump-wise, will be interested to see this weekend's patterns. Anticipate setting up a 'weekend pattern' for the pump soon, as we can already know that numbers and rates of insulin will be quite different from the weekend ones....all in good time!


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## Patricia (Jun 12, 2009)

Another note: mild hypo in town (why?) but dealt with fine. 

Now suddenly there's a call that he's having pasta for dinner with friend -- medium bowl he thinks. Wants to 'dual wave' it: have some insulin go in with meal, rest goes in over few hours. Yes, I think. Race home to look up his figures: 30/70 split over three hours. Okay. Ring back: we can't figure out the carb. 

Look up carb of dry weight of 90g in Collins, because friend's mum had thoughtfully weighed before eating. Collins is *wrong* here!! 90g of dry is 70g of carb. Collins says 22g/100g, which is the *cooked* carb, even though it's listed under 'dry'.

Argh! So the dose is messed up. First panic dose is 2units straight out (from Collins, 1:10). Then when calm settles, we decide to dual wave rest and see what happens.

Lordy. The skill here is learning to eye-ball the food. Not yet happening really. Turns out to be a small portion of pasta in his terms, rather than a large one...Then we wonder if he really didn't want to actually *say* 'small' in front of friends....

I await with interest the result of all this. Have the feeling it will be all over the place. Fingers crossed though that he doesn't crash while over at a friend's wanting to have fun. This is my only worry, the only reason to faff and fret.

Blast!

But he was 7.2 before eating (!). So really, we continue to go the right direction (she tells herself...).


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## bev (Jun 12, 2009)

Patricia,
Was the hypo due to walking to town?
Just looked in the collins and your right it does say cooked weight and then it changes to dry? But is there much difference i wonder?
Let us know what happens later.Bev


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## Mand (Jun 12, 2009)

Gosh, Patricia! What a roller coaster! but i think you and your son are still doing so well because it is such early days and most of the time things are great for him.

I hate the pasta thing too as it tells you in dry then you have to work out for cooked etc! Very confusing! 

Will be interested to hear how your weekend goes. I am starting to feel a bit nervous because you are doing such a fab job, but will i be able to cope? will my son be as good as yours? Oh gulp!!!!!!!!!!!!!!!!!!!!!!


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## Patricia (Jun 12, 2009)

Exactly the question Bev -- we are leaving that basal rate just in case of the hypo coming from the walk.

Another pattern has emerged: morning highs. We thought the original one was from 'under dosing' the bolus because of the low night early on...But now it's clear that every morning he's high (14+) for a short time before 11am.  SO....advice of DSN (and our instinct) is to instigate lower basal earlier, and/or change breakfast ratio again.

Other than that -- all well! Though he is still over at friend's, presumably coping....Good for him is what I say.

Mand, point about pump really is that SO much of it is programmed in. Yes, my son is fab. He likes gadgets and he likes the sense of control, so it suits him. But I can see how it would suit a wide range of people, children too: you can set rates and change day to day, so although being proactive makes things *even better*, not being so doesn't necessarily make things awful, if that makes sense? In fact, lots of teenagers go on pumps *precisely because* they are really having trouble getting engaged with it all -- and the pump helps them. So I think that we are particularly lucky -- but that in other scenarios, the control would also be much more successful than on MDI.

Re the weekend: we are going with the 'test' theory, eg keeping the same levels as weekday/school days. We know they won't work. But where and how they go wrong will inform how we deal with weekends. 

Sigh. The 'science' of trial and error!

(p.s. Pasta. Bane of existence. But we all love it. We hope: better on the pump!)


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## Sugarbum (Jun 12, 2009)

Patricia said:


> Another note: mild hypo in town (why?) but dealt with fine.
> 
> Now suddenly there's a call that he's having pasta for dinner with friend -- medium bowl he thinks. Wants to 'dual wave' it: have some insulin go in with meal, rest goes in over few hours.




Absolutely loving the lingo patricia! I shall be making a mental note of "dual waving" as Ive never heard it before!


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## Patricia (Jun 12, 2009)

Don't let me wax too lyrical here Sugarbum, but...dual waving really has got to be the business! We struggle more than any food stuff deserves with pasta, rice, pizza. Dual waving offers a chance to spread out the dose over hours, which we know from experience is precisely what we/E needs. Of course, like everything else, the amount of time and precise balance of dose (30% first, then 70%? 40% then 60%? 3 hours? 4 hours? 6 hours?) is up for grabs, down to frequent testing at first, and all about the individual...so we aren't there yet and I'm sure we won't be for some weeks/months -- and even then, not forever. 

However. At least there's a chance not to crash before the pasta's hit, or spike in the night with rice. The sensitivity of the therapy is a great relief.

However again. E will come home tonight no doubt in some disarray. The debacle of the earlier mis-judged pasta dose. Oh well. Another boon: we can correct with fine precision, then test at night. That's the theory, anyway!


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## bev (Jun 15, 2009)

Hi Patricia,
Just a quick note to say i hope E is allright? Things seem to have gone quiet so i thought i would see if he is ok!Bev


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## Patricia (Jun 16, 2009)

Yes, Bev, busy weekend and been away for two days! Still away actually, nipping in now on someone else's computer...

Argh, I've just done it again and lost all my typing for this! Suffice it to say that ALL IS WELL. Pump therapy continuing apace and with *great* results: virtually all numbers between 4-8.

Several things to consider and work on: middle of the night reading two nights ago at 13! Eek. We think this may be very long-lasting rice, despite dual waving...On MDI, we did notice him waking on 17 after a dinner of rice. And it would make sense for this reading too -- we'd had it for lunch. Smart father gave 1 unit correction in middle of night though bolus wizard said 1.6 units -- the sensitivity in the night is so great, and the reading was not 'stable' as it were, because it was from rice and would wear off....So 1 unit brought him to 4.5 in the morning!

Anyway, more later. Meeting!

Things to work out, but all is really quite well. Running a little low? Sometimes? I want him a little higher, but both him and his dad are delighted with numbers. Never thought we'd be in this position!


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## Patricia (Jun 16, 2009)

Also worth saying that hey the tubing does get caught, but to no real trouble! Two nights ago, and 'ouch' from upstairs: caught on door handle! We were warned about this. But it seems no worry, and this, along with the pump actually tumbling down and hanging by its connection to the body (eek, again!), just shows that it's a good piece of kit, withstands all, is not uncomfortable, and really just blends in easily...

Again, a green day. Absolutely astonishing. We have tweaked the morning a bit, raising the basal, but then a mild hypo...so not sure we'll stick with that.

Feeling much more laid back about everything. Not sure what/if to tweak, but numbers so good nothing feels imperative.

And *this* is a true revelation: high numbers in our household bring with them real stress. How to get them down? How did they happen? How to prevent it next time? And how to stop the spiralling panic of feeling bad now and worrying about the future? It's always all hands on deck. This is not the case with one high number -- but it is the case with several, or with swings...with anything where it feels we are at the mercy of it all.

Of course, we are at the mercy of our bodies. However, having incremental control means, for us anyway, that there is a significant stress suddenly removed. It's hard to explain. The heaviness of diabetes is never that far away, and I guess never will be. But -- the daily stress of see-sawing numbers, the crying with frustration (this is me, btw -- the others seems stronger in the face of it all) -- this is so reduced, even so early with the pump, that I'm pinching myself.

I know there are many situations yet to be encountered: sick days, more growth, movement and travel, lots of exercise...But it feels much more doable. Life feels much more dealable. That simple.

The pump is not just about numbers, though numbers are great. It's also about quality of life. I didn't believe it, not really. But I do now. Things are still a pain in the neck, carb counting and set change are faffs, etc. Nothing makes diabetes go away. But a bit of a cloud has lifted, I suspect permanently.

(p.s. home now. Hence ability to think.)


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## bev (Jun 16, 2009)

Wow Patricia!

It really does seem like you are all so much more 'chilled' and your lives all seem to be a lot more predictable! I can only dream of such good control and relaxation. I am so pleased that you have the time to post on here as it does spur me on to get Alex on a pump asap. But, more than that, it gives me hope that life can return to a bit of normality if we do get a pump.

I would love to wake up in the night and not worry about levels! Actually i would just like to stop worrying altogether - although i know that is probably impossible! Even if i wasnt worrying about diabetes i would be worrying about something else to do with any of my 3 children!

I know diabetes wont ever go away but you do make it sound so much easier to get a grip of! Well done to you all - and keep the posts coming please! Bev


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## Northerner (Jun 16, 2009)

Excellent news again Patricia - am particularly interested to hear about how robust the set up is! 

I can understand the stress. In the past, before diabetes and as a grown up, I refused to allow my mum to come and 'look after' me when I broke my arm and then at another time, my leg. It wasn't because I don't think she loves me and would be over fussy, but because even silently I would have felt the edge-of-the-seat concern about everything. There were times when the pain-relief either ran out or didn't work when I was in agony, but it would have made it worse for me to have someone there that loved me and virtually powerless to help. I'm not being very clear, but in a clumsy way trying to say how I can understand how much better things must be now that that fear has subsided


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## Mand (Jun 16, 2009)

So glad things are still going well for you and E. You are giving me strength and hope for my son. I am literally ticking off the days till 7th July!

I look forward to your next update! I am so happy for you and your family. Those levels are what i dream of! 

Keep up the good work!


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## Patricia (Jun 17, 2009)

Thanks you guys. It's so good to hear from you.

We are attempting now a change or two ourselves to basal rates in particular, starting tomorrow. Just little tweaks, adjusting by .05unit/hr in one place, and moving the *time* of the change in another place. It takes about an hour for a change to affect levels in the blood, so you always need to pre-empt a shift you want to try to achieve.

He's generally been waking quite low (sound familiar, Northerner?!). We are therefore also going to try a slight upwards shift from midnight....It's these sorts of things that I find really amazing, these little adjustments. For E anyway, these actually have an impact! It's so wild, and gratifying. 

The team have just said something about him being 'sensitive' to insulin changes, so perhaps not everyone is the same (of course, no one would be with diabetes, would they?!) -- but again, less of a sensitivity may mean adjusting basal rates by .1unit/hour etc...It's all about which increments to use in the adjustment...

Anyway. Woke on 6.6. We didn't check him for the first time last night. He'd gone into dinner at 6.4, then was 8.4 before bed, so we thought it was as good a night as any. A low carb dinner too, so not much bolus to contend with.

And we were right! Hurray. I woke in the night though, thinking I heard him fumbling for the meter. Which he wasn't. Sigh. Will all take some getting used to!


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## Patricia (Jun 17, 2009)

Northerner, just a little more on this. Are you thinking about a pump? It seems it would work so well for you. You too seem perhaps sensitive? Tiny increments may suit you hugely?

Bye!


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## Mand (Jun 17, 2009)

Well done on your first night without having to check! You really seem to have got to grips with the pump very quickly. I can only hope that we have half your success. 

Keep up your great posts and i wish you continued good luck with the pump!


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## Sugarbum (Jun 17, 2009)

Patricia,

Great to read again on how it is going for you all, a real insight. I just cant believe these numbers!!! Fantastic! I cant believe what tight control you are getting, but how relaxed you sound and E with the approach and change in life. I am abit taken aback! These are all round great results.

Mand I cant wait to hear from you as well!!
x


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## Lorraine (Jun 17, 2009)

This thread is so inspiring.  I am going to ask a really stupid question and probably should know the answer but my lack of diabetes care and help shows that I don't.  Here goes..............................

What is MDI and bolus or basal or whatever its called?  I honestly have no idea.


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## bev (Jun 17, 2009)

MDI - multi dose injections 

bolus - fast acting insulin (e.g. novorapid)
basal - slow acting background insulin.(e.g.levemir)

Your not stupid, and its much better to ask a question than be in the dark! What insulins are you on? Bev


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## Lorraine (Jun 17, 2009)

bev said:


> MDI - multi dose injections
> 
> bolus - fast acting insulin (e.g. novorapid)
> basal - slow acting background insulin.(e.g.levemir)
> ...



Thank you for that.  I am on novorapid and levemir. What does multi dose injections mean though?    Can anyone have a pump?  My management is so sh*t that i have become very down and depressed.


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## bev (Jun 17, 2009)

Well if your on both of those insulins then your on MDI. It means that you have as many injections as you need to cover food plus your long acting insulin.
Some people are on a mix which is 2 injections a day - but that means they cant use a fast acting insulin like levemir to correct them if they are high, like you can.

Not everyone can go on a pump there are certain criteria that have to apply. These are in the NICE guidelines, but too many to type here!

If you have a high hba1c level
If you have lots of hypo's
If you have lots of hypers

I cant remember all the other reasons now - but if you google NICE guidelines then it will show you all you need to know.

What is your hba1c?Bev


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## Patricia (Jun 17, 2009)

How long have you been diagnosed, Lorraine? As far as I can gather, gaining control is pretty awful early on for *everyone*, so don't feel bad.

If you've been diagnosed longer, it may be time for a change? 

There are NICE guidelines (don't know what the letters stand for offhand, someone will!) about being eligible for a pump (not great control, or hypo unawareness, etc) but more and more these seem to be able to be worked around in any case. My son's control wasn't been desperately bad all in all on MDI -- but we were very motivated, as was he, to see improvements etc. We also struck lucky with consultants and our GP.

I'm sorry you're feeling down. Out of whack numbers aren't going to help physically or psychologically. Are you in touch with a decent diabetes team?


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## Lorraine (Jun 17, 2009)

bev said:


> Well if your on both of those insulins then your on MDI. It means that you have as many injections as you need to cover food plus your long acting insulin.
> Some people are on a mix which is 2 injections a day - but that means they cant use a fast acting insulin like levemir to correct them if they are high, like you can.
> 
> Not everyone can go on a pump there are certain criteria that have to apply. These are in the NICE guidelines, but too many to type here!
> ...



Bev, I have no idea what my hba1c is.  I have a check up in August and I will make sure I have my list of questions and make a note of my blood results.


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## Patricia (Jun 17, 2009)

Thanks otherwise all for good thoughts and comments. Numbers good again today, though two mild hypos -- one the same-ish time as yesterday, so we're changing that basal rate! The other we think was from sheer hunger, late in the afternoon...

Otherwise -- all good. Literally. Again, 4-8mmols. Wow.

One thing though: too easy to forget to bolus! It's a whole different habit to develop! This has happened twice! Did you do it? Oops, no. No faff with needles etc means that life becomes a bit more like it used to. We figure out the carb etc but then forget the final step and just sit down to eat!

Brief conversation at bed about whether he is glad he went on the pump etc: unequivocal yes. Only difficult thing is sleeping, but he's made virtually no fuss about that and says he's finding ways around it. Otherwise it makes a huge difference to be with his friends at lunch rather than going off to the medical room to inject...And tonight, he had a brie and grape sandwich before bed. We'll test him at 12 midnight, but the very idea of having one would have been just out of the question two weeks ago. The bolus was just too inaccurate with the levermir, esp at night, then. Whereas now, and already, we can be quite sure of nothing major. Maybe a little carb top-up, but the nights are so steady that that's it.

Set change so quick tonight I missed almost the whole thing while unloading the dishwasher! Some pain while removing the 'guide needle' (which puts the tiny cannula in), which is too bad. But over soon he assures us. Getting a couple of dots on his tummy from the sets, but nothing compared to the bruising from injections. I'm sure these will become more and more, but again...it's a different ballgame and level of intensity of physical impact with a pump.

Night!


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## Adrienne (Jun 17, 2009)

*Pasta*

Hi

I'm back, missed you all, been ill and away and still not myself but will dip in and out, especially with the pump stuff which is my thing (as Bev knows).  I will hopefully be a certified pump trainer at some point hopefully this year.

Patricia  -  pasta, does not always have to be a dual wave.   For my daughter we tried all different ways and the one that works best for us at the moment is to give the full bolus (ie normal bolus) of the whole lot and then do a temporary basal increase of 165% over 3 hours.  By the way for the carbs we use 25 cho for 100g cooked pasta but if there is a cheese sauce on it we effectively bolus for the the cheese as well (I know it goes against the grain but that fat is a problem).  One friend uses 30cho for 100g cooked pasta if cheese sauce.

Rice - this doesn't start working for a while after eating it so if you do a dual wave the chances are there could be a hypo immediately after eating (if you do the bolus first).    So we use  30/70 or 40/60 dual wave over 1 1/2 hours.

MacDonalds we do 70/30 over 1 1/2 hours.

If you have tried jacket potato with cheese and beans and can't get it right, don't panic.   Only 20% of pumpers can control that.   I am one of the 80%.  It is nigh impossible due to the jacket (for some reason), the fat and the fibre.   At the moment we do a normal bolus for the full amount of carbs and then a 150% temp basal for 1 1/2 hours.  It is the closest we have come to getting is ok.

Any time you want any help with anything please please give me a shout.  I'm more than happy to help with anything to do with pumping (or anything else of course).

PS   I love the email group www.childrenwithdiabetesuk.org group.    They are like family to me now.   They are very different to this group.  This is just for other people's info as a couple of people have commented that this is a better group.   It is not better nor worse.   They are different and give different types of support.    The email group is purely for parents of children with diabetes, it does not deal with anything to do with type 2, none of the children on our group have type 2 and it does not deal with adults with type 1, just children.    It really is amazing the information that all the parents hold between them,  its astonishing how clever and well informed they are.   Some of the parents have type 1 and a couple have type 2 but it is ultimately about the children.    You would not believe the amount of children who go on to pumps after joining our email group.   People come along and have never heard of pumps or how to get them.    Ask Bev, she has been armed with info for her son about getting a pump.  So please before anyone else says this or that is better or worse please be aware they are different, they are both fantastic groups.    

The reason for me putting that is that I do not want new parents to diabetes put off the email group.   They may well need the other group in some capacity but don't know it unless they try.  The way of thinking about children and diabetes is so very different these days.

The latest I heard is that if you are on BB (basal bolus) you now do not give long acting carbs to treat a hypo, it is now supposed to be the same as if on a pump, just give quick acting.    I know no more info on it that than but if anyone wants me to find out, let me know and I can do that on Monday.   I don't suggest anyone follows this yet if they have not been told.

Anyway its good to be back and Patricia, you are doing absolutely fantastically.


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## Northerner (Jun 17, 2009)

Hehehe! I can imagine that - often I only know I've injected when I can see the debris on the couch beside me! You've got me fancying a brie and grapse sandwich now! Or maybe brie and cranberry....slurp!


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## Adrienne (Jun 17, 2009)

Mmmm yummy yummy brie and grape, love it.  Not had that for years.


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## Steff (Jun 17, 2009)

nice to see you back


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## Northerner (Jun 17, 2009)

Adrienne said:


> Mmmm yummy yummy brie and grape, love it.  Not had that for years.



Adrienne! Where have you been? Have missed you being around.


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## Lorraine (Jun 17, 2009)

Patricia said:


> How long have you been diagnosed, Lorraine? As far as I can gather, gaining control is pretty awful early on for *everyone*, so don't feel bad.
> 
> If you've been diagnosed longer, it may be time for a change?
> 
> ...



Have been diagnosed 2 and half years and have had nothing but problems since day one.  My care or lack of it is appalling and I just feel i am hitting my head against a wall.  My GP's surgery has an inhouse diabetes clinic but I keep being asked to be referred to the hospital. Have had some great advice on here today and what a shame I didn't find this site 2 years ago.  it was my boyfriend who found this site for me.


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## Adrienne (Jun 17, 2009)

Northerner said:


> Adrienne! Where have you been? Have missed you being around.



Hi

Went to Florida for a week to see my dad who lives there half the year, got back one week and then half term and off camping with the Single Parent Travel Club (www.sptc.org incase anyone is single and has kids  ) then I've been ill, still don't feel right.  I slept all last week and as a single parent with a daughter on a pump I still had to do the night testing and look after her but had a couple of friends take her to school and back for me so that helped.

Funnily enough I've missed you guys for some reason.


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## Adrienne (Jun 17, 2009)

Lorraine said:


> Have been diagnosed 2 and half years and have had nothing but problems since day one.  My care or lack of it is appalling and I just feel i am hitting my head against a wall.  My GP's surgery has an inhouse diabetes clinic but I keep being asked to be referred to the hospital. Have had some great advice on here today and what a shame I didn't find this site 2 years ago.  it was my boyfriend who found this site for me.



Hi Lorraine

If I were you, I would ring around the hospitals that are accessible to you, don't just go for the one nearest, the care may be as bad.   Try and find a hospital that offers pumps.  You may not need or want one immediately but generally if a hospital offers pumps they are quite clued up in the world of diabetes and should offer a full service of tests and staff (in theory).  It is always better to travel a little bit further just to get good people.  You don't have to settle for the nearest one.   If your GP refuses to refer you, make a complaint to the practice manager and if that fails write again but this time write to the PCT (Primary Care Trust) as well as the practice manager, saying you have lost all faith in your GP and quote some NICE guidelines at them so they realise you know what you are talking about.

You do not have to stay with your GP.  Go get 'em.


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## Steff (Jun 17, 2009)

Tis Cause We Are The Extended Family Now Adreinne :d:d


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## Adrienne (Jun 18, 2009)

Ha ha ha so true.....


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## Mand (Jun 18, 2009)

Patricia
Glad things still going well for you. It interesting what you said about E forgetting to bolus. When we first thought about my son having a pump, it was my main concern that he would forget to push the button! But with his control headed downhill during the past few months and him developing a needle phobia, we seriously considered one and now just cannot wait!

Lorraine
My son met the criteria for a pump because he developed a needle phobia which resulted in him becoming distressed each time he had to inject. Also he kept injecting into the same spots (too scared to move across a little) so developed lumps which did not help. Also his control not so good now that he out of his honeymoon period.

Adrienne
My son will be going on a pump on 7th July. What you have written in your recent post is invaluable to me. Thank you so much. I would love your support over the coming weeks if that ok?

Hi everyone! Hope you all doing ok. 

Hi Sugarbum, bet you crossing the days off! We are!! 

Hope you and Alex doing ok, Bev.


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## Adrienne (Jun 18, 2009)

Hiya Mand

I'll be here.  Been doing this 2 1/2 years and its amazing for different food does to you.  You learn so much more on a pump.  Plus I have my other friends in the background if I don't know stuff.   Bev has it right, she uses both this group and the email group and gets benefits from both.

Take care


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## bev (Jun 18, 2009)

He he he - i am greedy like that!

Adrienne i am so glad your back on this forum - we have missed you! If Alex does go on a pump i know we will need you - and there are a few on here just about to pump - so hopefully you will stick around and become our pump expert -(along with Patricia and everyone else).

Hi Mand - hope your ok and counting down the days?

Lorraine, good idea to ask for you hba1c next time your at clinic, it will tell you how good your control has been and if its not what you want then you can start tweeking your insulin etc .. and we will all be around to help in any way we can!Bev


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## Mand (Jun 18, 2009)

Thanks Adrienne. 

Yes Bev, ticking the days off the calender! 

Could i just ask you both about the other site you talk about. How does it work? What can i expect if i join? What would it entail?


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## Patricia (Jun 18, 2009)

Heavens, look what happens when I go to the gym -- such a flurry!

Adrienne, great to have you back. Yay! Thanks for all your help with the ins and outs of it all...I can see that we will need to become more sophisticated about so many different foods -- but ultimately it's so good! And this is because it means that the possibility of eating everything to little real detriment is possible -- such a relief, and much healthier in all ways. To my mind, anyway.

So much to respond to...Completely agree that both groups (email and this) are useful -- my only difficulty with the other is that I *just* can't figure out how to respond to them! It feels so clunky. And reading the digests does my head in....The information is *extremely* helpful, and it is full of good, close people (like you say, with t1 children only, etc, which is just such a boon)...But, although I'm on the list and get the digests, I can't figure out how to respond to a email thread -- bev says click on the side, and I think, what side?! Does each response go through to the overall ukmailing list address, is that it? And you just keep the thread title? Anyway, that's all I really meant by saying I prefer this one -- I can use it! But the two groups serve quite different purposes in different situations, which is as it should be.

Mand and Lorraine: I think you should investigate the email group, absolutely. Esp Lorraine at the moment, because there's real activism there for families in your position. It's extremely important that you get the help you need and deserve. The CWD group is full of parents who have pursued things and helped others to pursue them. 

Phew! Bolus for brie and grape last night worked like a dream. Realised after he was asleep forgot to shift basal through night, so he did wake up a little lower than ideal -- 4.8, having been checked at 12am, on 7.4. Will shift it tonight and see what happens. Would rather than the night figure holds steadier...

I'm sure forgetting to bolus happens. BUT, the ability to correct at any time is there, so it's less of a disaster I think. Ah yes I've just remembered: for instance, yesterday afternoon E had 14g carb of biscuits, while playing xbox! This no doubt distracted him to the point where he forgot to bolus, and realised such at dinner two hours later. Given that this had happened, his pre-dinner reading wasn't dreadful -- 9 something. So of course the bolus wizard then corrects (incrementally and finely, that's the point) that and doses. And he ends up on 8 pre bedtime sandwich, 7.4 post sandwich...All good. 

There is a sense that things don't go totally haywire like they did on MDI, that's the thing. Control always feels within reach, recoverable. So far anyway. Let's wait for illness, etc!

Adrienne, we have not yet begun to mess with basal percentages...but I can really see how this will prove useful. One thing at a time! So delighted with it all though...


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## Mand (Jun 18, 2009)

Thanks Patricia. Will investigate. Good to read your latest post and to know all going well. Those numbers are just so fab! We rarely out of double figures these days. We think 10 is good! Roll on 7th July!


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## Mand (Jun 18, 2009)

Patricia
You mentioned earlier about a book called Pumping Insulin. I looked on Amazon and they had several versions of it. Please could you describe your front cover (eg colour of it) so i can identify it at Amazon and order it. Thanks!!!!!


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## Patricia (Jun 18, 2009)

Hi Mand -- thanks! Pumping Insulin..the one we have is blue I think, by Walsh? But if I were you I'd get the most recent edition anyway, for UK market...

does that help? Not really! I'll try to remember to look at it when I get home...


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## Adrienne (Jun 18, 2009)

Hi Mand and anyone else who is interested.  

The other group is for children who have diabetes in any way shape or form.  My daughter only has diabetes because her pancreas was removed at 4 weeks old so she was made a diabetic but diabetic all the same.

Take a look at the website we have written, new this year.   www.childrenwithdiabetesuk.org   It tells you all sort of things ie what to expect at school, how to apply for DLA etc etc.   From the home page you can join the email group.   You just need to fill in your email address and how you want the emails sent to you and send it.   It is that easy.     I take from Patricia's message that she has the daily digest, this is the hardest way to do it in my view and totally understand why she gets confused as to how and where to post things.     I have individual emails coming through into my normal outlook express.   I have set it up that I keep them in a separate folder from my other emails from other people (I can help you do this if you wanted me to).    There are lots of emails though, lots and lots which is why some people choose daily digest.    There are a few hundred members and there are your regular posters, me being one of them and Bev even more so than me now !!  My thoughts are that if the email is not relevant to you just delete it, you don't need to read them all.    I was away for the weekend and got back and had 300 odd emails just from the support group, I didn't bother to read any of them and deleted them all.  Sometimes you have to, you can get bogged down by it.   If you want to use the group just to ask your own questions and not follow anyone else that is fine too.    You will generally get lots of answers.    Someone will have been through your scenarios.   

We now meet up once a year in the Cotswolds, whomever can make it, there were 38 families this year.     It is not clicky, we do generally know each other well but it has built up over years.    Bev got stuck in quite quickly but I think maybe it is because she knew me from here and was brave enough to join in and say hi to me.   I'm happy for anyone to use me for that if it helps.    

I love it and it is my lifeline.   It was us that changed the Change4life wording.   We have formed the UK Children with Diabetes Advocacy Group and are now known in the diabetes world and have quite a standing now.  We have our own website and we work with JDRF a lot and DUK when they behave themselves and INPUT and hospitals and clinics around the UK.    We are quite powerful but not powerful enough yet, none of us get paid for anything and we all have children with diabetes to look after first and foremost.

Anyway see what you think of the website and join up to see what is happening.   Email me privately if you think I can help you.

It is different from here, so you can use both as a resource like Bev.   This is a forum and that is an email group.

Hope that helps and explains it easily.


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## Mand (Jun 18, 2009)

Thanks Patricia. I will wait to see what colour yours is then take another look at Amazon site. As you say, i should buy the latest edition really. 

Adrienne
Thank you so very much for your long post telling me all about the other forum! I truly appreciate your help. I will take a look and let you know what i think. I really just do not know what i would do without this forum already and i am relatively new! Thank you again.


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## Patricia (Jun 19, 2009)

Hello all

Interesting evening/night!

3 hour dual wave for pasta -- previously we thought *had* worked -- ended up at 6.4 ish with a half hour to go at bedtime. Then tested at 12midnight -- 3.9! Woke up for milk and some chocolate...3am: 13.4! Ouch! Decided not to correct to see what happened. This morning: 13.4.

One good thing: at least it's clear that the tiny adjustment made to the night basal has completely stabilised the readings. No drop from middle of night....

However. One of two things seems to have happened: miscalculation of pasta carb, OR something about the pasta spiked longer. Either one is perfectly possible: it was a complicated pasta, with sausage (high fat?) and some cheese on top, so hard to know how long it took to 'go through' and how much of his portion was actually pasta rather than gubbins!

Sigh. Not end of world. Correction this morning, and I'm sure all will be well later. Meanwhile we've also adjusted the late morning basal after two out of three days he was low between 10-11am -- but the other side of things is that the morning spike (between 9-11) is under control...so we need to be careful!

We've also slightly lowered the late afternoon basal, because once again two out of three days he's going a little too low just before dinner.

Things feeling a little complicated, but then I'm a bit hazy from lack of sleep, and worry in the night. As his father said at 3am, 'well 13mmols isn't great, but I was worried he might be at 1.3 after a midnight reading of 3.9'! 

Quite. I dreamt about diabetes all night...

And of course it's all change tomorrow when we go to last weekend's basal pattern, which worked like a dream....Will it again?! Who knows....


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## Mand (Jun 19, 2009)

I can imagine that you are feeling tired Patricia. Hang on there as you doing a fantastic job! I hope this weekend goes well for you.

Can i ask how many blood tests you are doing at the moment and when you do them?


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## bev (Jun 19, 2009)

Hi Patricia,
Just to let you know that i am reading all your posts - i just dont have much to add - other than i like the way you describe things - it makes it sound a lot simpler than any of the articles i have read! I look forward every day to reading the latest- so dont stop. You all sound so relaxed and happier with a pump! Well done and keep up the good work.Bev


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## Patricia (Jun 19, 2009)

Thanks for this support Bev and Mand. Just so appreciate it. Have come back from long overdue errands, ran into friend who's brother is type1, diagnosed at the same age as E (and actually, I think pretty much all three of our boys?!). His control has been up and down. He's now 35 ish, and losing sight in one eye. He also has not attained all of his height. I tried not to show it, but it jolted me a bit, and made me so frustrated. Therapy has changed so much in this short time -- I pray that our boys will get the best they can out of their lives. A bit of a shock though. And upsetting. This chap is so young....

Anyway, so. Big breath. Pumping Insulin book Mand (!) at last: we have the fourth edition. Author is John Walsh. Cover is in gradients of blues, with bright yellow writing. Get it!

Bev, did you get the Hanas (sp?) book in the end? We have used it loads, I confess...


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## Mand (Jun 19, 2009)

Oh gosh Patricia. That is a worrying story. As you say, lets hope our boys will do better. Hopefuly they will because they are the next generation to him and improvements have been made. But it certainly makes you stop and think. Very sobering thoughts. 

Thanks for the details re the book. I will definately order it. In fact will do it right after this post!

Please keep up your escelllent posts. I do not know if we will have the same success as you but you have certainly given me hope and strength and i thank you for that.

Yesterday we had a courier delivery of all the bits and pieces that go with the pump and also i went to the chemist to pick up the new insulin. I have had the pump put on our home insurance, as requested by our dsn and I have nearly finished the on-line pump training course - so roll on 7th July! 

Have a good weekend and i hope you get some sleep!


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## Patricia (Jun 19, 2009)

Thanks Mand. Less successful day today -- 3 hypos! Not sure where from, esp after adjustments. But PE may have played a part...Adjustments wrong? Argh. Feeling confused...Will sit down tonight with hubster and crawl through numbers and try to see what's happening....Out to dinner first though: end of exams and examining for everyone!

Sigh. I just want to *solve* everything -- now! But that's not what diabetes does, is it?

Have a great night folks.


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## Adrienne (Jun 19, 2009)

Patricia said:


> Thanks Mand. Less successful day today -- 3 hypos! Not sure where from, esp after adjustments. But PE may have played a part...Adjustments wrong? Argh. Feeling confused...Will sit down tonight with hubster and crawl through numbers and try to see what's happening....Out to dinner first though: end of exams and examining for everyone!
> 
> Sigh. I just want to *solve* everything -- now! But that's not what diabetes does, is it?
> 
> Have a great night folks.



Hi Patricia

What is the care plan for PE?   There are so many different ways to deal with it.   With my daughter's PE it is about 45 minutes of something.   We have a sliding scale of what do to beforehand ie if 6.0 to 8.0 one digestive biscuit, if over 8.0 ok etc etc.    If over 14.0 you can exercise but you HAVE to give insulin even if the pump says no !!  If you don't know this let me know and I'll take you through why and how.

If PE is particularly energetic, she is tested halfway through.   Then she is tested at the end of PE and regardless of what she is we have to have a temp basal of 0% for an hour.    

One friend does a temp basal afterwards of about 70% for 8 hours and another friend puts the temp basal on beforehand for say 50% for an hour.    It is whatever works.  So your basals maybe ok, you just have to compare it with non PE days and you may need to look at the PE care plans.

If you know all this sorry but just in case you didn't its worth me mentioning it.

Hope it helps.    

By the way you are doing just great.


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## Mand (Jun 20, 2009)

I can understand how you feel about wanting to solve everything, Patricia. But the problem with diabetes is that the goal posts keep moving! So from my experience so far i am thinking that it is impossible to get it right all the time. I think that is you can get it right most of the time then you are doing a pretty fab job!

So do not get too frustrated. You are doing a great job. I just hope i can do half as well as you! 

How often and when do you test your sons blood? 

Adrienne, your advice is going to be sooooooooooooooo helpful when we start pumping! Even though we not started yet, i read the advice you give to Patricia so i can build my knowledge.


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## bev (Jun 20, 2009)

Patricia, if you think back to when you were on MDI and how hard it was to try to resolve anything - you must surely realise that having the pump means there is always a way and it only takes a short period of time to resolve! So give yourselves a big pat on the back and dont worry if your getting little blips - i am sure it wont be for long! 
Mand, your right, Adrienne is an expert on the use of pumps! What she doesnt know you could put on a postage stamp! And if she doesnt know - she has loads of contacts on the other forum who can help! Thats another reason that i am on the other forum - there is so much advice that is tailored towards diabetes in children. So i get the best of both worlds as i also get tons of advice from adults living with diabetes and all their years of experience etc..from this site!Bev


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## Mand (Jun 20, 2009)

Bev, that is very re-assuring news re Adrienne and her pump knowledge. I am so thrilled to have found this forum as i cannot imagine life without it now! I have learnt so much re pump already from Adrienne and Patricia. It is just invaluable.

Can't decide re the other forum. Adrienne very kindly did a post giving lots of details about it but just concerned as i struggle, timewise, to keep up with this one. But at the same time, i do not want to miss out on valuable info. Maybe will consider it when we return from our hol.


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## Patricia (Jun 22, 2009)

Hello all

An interesting few days...

On Friday, the three hypo day turned into a four hypo one -- cripes! None of them really washed him out, but we were all a bit 'what the heck was *that*' by the end of the day... Adrienne, we are pretty sure it was a fairly active PE session...your sliding scale is a great idea. We were given a temporary basal pattern to start off with by our team, which we are trying today (another PE session!) -- so I'll let you know. Like you say, it's all trial and error. But we were worn out by the end...

Then Saturday was another strange one: high-ish (11 and 12) all morning (we think from 'carrying over' the waking level of 12, we think in turn from over-correction of last hypo!), and then strangely unable to correct using bolus wizard, because of 'active insulin' still on board...so by mid-afternoon, we decided to override it and force a little correction, which brought him down. We are investigating what to do in this scenario -- while the mechanics make sense (the wizard doesn't want to give a correction if insulin is still active, because it believes that the insulin given will eventually settle things out, so doesn't want to overdose things), the reality is that after 2.5 hours and he's still high, we all know he needs a touch more to come within range. On this particular day, it was probably due to a lingering insulin resistance, having been 13 in the night ...Anyway, will let you know what the team say about that as well...Once he was down, he then had a hypo late in the day again. Sigh. I suspect we will mess with that rate, esp given events of last night!

Then yesterday (Sunday) all went along swimmingly really, until --. But first, the slightly reduced nighttime basal meant that he woke on 6, which feels better than 4, and had not dropped at all in the night. Dosing went well all day -- even the pizza, which we dual waved over 3 hours as suggested, and at four hours post meal he was 7mmol, which was great. In the evening, he had a roast dinner (wizard-ed), a small ice cream (wizard-ed) and then was mighty thirsty so had some apple juice (wizard-ed). We tested him two hours 15 mins after the ice cream bolus, and he was 4.5. We knew we weren't comfortable him going to bed on that number, so he had a packet of biscuits (14g carb). We said we'd check him in another hour, which was 2 hours after the apple juice bolus, 1.5 units). We did so, and he was 1.6!!! He was difficult to move, very sweaty, and not making much sense, sound asleep...Got him up, combination of glucose and apple juice. Once he woke up a bit he could click that he was low, but oh my... 15 minutes later he was 6.6, and at 3 in the morning he had shot up to 11mmol. This morning he was on 10mmol.

We are feeling wrung out. How could he have dropped from 4.5 to 1.6 in an hour, with biscuits on board?! Options: the apple juice we bolused for went in and out so fast that the insulin basically missed it, and also went in before the biscuits could take hold? Or stacking boluses? (But I thought this was okay on the wizard...).

In any case we figure the 11mmol in the middle of the night was a result of the biscuits and glucose settling in....

Ugh. All questions now set out to team, so let's see what emerges. Our main concern is how to treat these sorts of scenarios -- this swinging around is difficult, of course. We need to understand managing bedtime more clearly, perhaps...And today, more PE! Argh. He's trying a temp basal. We've also made clear that he needs to ride high if anything, free carb if necessary, to try to avoid another dreadful low in the next day...

Still: I know in my heart it's manageable. These are all just situations for which we have no precedents, and are learning on our feet really...

The one unexpected thing that has come through from this is that because there is such micro-management possible, I'm finding my urge *is* to micro-manage. I feel that a completely even and worked out life *must* be possible on this system....so am rather living it too much. I think this will go away in time, but I'm more anxious than I'd like to be...I want it all to be *right*. Sigh. We've been here before, haven't we, hasn't everyone?!

Okay. For now. Will stay in touch.

How was everyone else's weekend?!


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## bev (Jun 22, 2009)

Hi Patricia,
Obviously i cant comment on anything pumpwise, but Alex had an applejuice last week for the first time since diagnosis, he went to bed on 7 - but we checked at 11pm and he was 2mmols! I suspect its timing of the insulin with apple juice as its like lightening through the body and probably misses insulin completely! Anyway, your doing brilliantly - dont be disheartened - i think there must be a time when there are teething problems and lots of 'unknowns' - but i am sure you will iron them out eventually! People who have been pumping for years still have the odd blip so dont give yourself a hard time. Bev


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## Patricia (Jun 22, 2009)

Thanks Bev -- yes I confess I think it's the apple juice too. After all, we use it to treat hypos, and it works like a dream! There may be a solution like only bolus half the apple juice or something...


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## Patricia (Jun 22, 2009)

Reply from our team is quite interesting and comprehensive:

We are lowering a couple of basal rates by 0.05u/hr in the evening, to try to get all those levels a little higher (and presumably then not so susceptible to bolus activity). We are also changing the evening carb ratio from 1:10 to 1:12 (had wondered about this just this morning, okay the middle of the night!).

As for the difficulties giving corrections, we are changing the 'active insulin' rate to 3 hours, having started at 4 (most start on 5, apparently, but with E growing etc and eating lots through the day, we started on 4 hours). This will allow us to correct sooner with leftover insulin in the system.

Phew. Wonderfully good humoured note though saying 'good grief yes you have had an interesting time of it!' -- rather good to hear that we're not just totally messed up...Acknowledged too that diabetes just sometimes *does* these things, as we all know...

Re bedtime levels: the whole idea is to get evenings stabilised through the night such that you can go to bed on 5 ish or 6 ish, no top up needed. But this is dependent on being able to regularly reach 6mmols by bedtime. We have maybe too often been lower than that, so things are starting feeling unstable, with middle of the night readings then becoming a little changeable because of carb on board...So hopefully with these changes over next couple of days, bedtime readings will feel more comfortable. What I don't know yet is then what to do with snack bolus last thing at night? Hmmm...

I'm sure everyone knows this by now, but the whole idea of hypo treatment too is glucose only (which we've been doing). In this case the idea is that the basal rate is so stable and finely tuned that carb is not needed. The bgl comes up a bit, and the body can stay there. Apparently larger amounts of lantus/levermir are needed on MDI -- more than the body really *needs*, because of absorption rates and metabolism -- so that's why carb is still needed with hypos on MDI, to balance what is assumed to be too much background insulin that strictly necessary. It is kind of strange, though, just to give glucose. At first our feeling was 'oh no, he's going to crash'...but actually, he doesn't! He just stays at 6 or whatever...

Although someone -- Adrienne? can't remember -- mentioned that long-lasting carb is going out of MDI as well. Interesting...

Okay, bye for now. Text from school says doin' good!


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## Mand (Jun 22, 2009)

Hi Patricia

Very interesting posts! I am exhausted just reading them but you had to live them! But i guess i better brace myself as i will be living it soon! 

I second what Bev says, you are doing a fab job and early on hiccups are all part and parcel of starting on a pump. You are clearly very committed and contientious (oh can't spell that!) and so is your son. You will get there eventually, although i do not think you can ever completely 'get there' with diabetes because the goal posts keep moving and so many factors come into blood sugar levels. 

I am glad about not having to have a carb after a hypo because it means that they don't have to eat extra calories which cant be a good thing in the long run for maintaining a healthly weight.

I have completed my on-line pump training course so i have at least some idea of how to operate it. But the bit that i cannot get my head around it something that you mentioned in your post. If you try to give a bolus when there is active insulin still about then the pump will not allow you to give what is needed. Oh i not explaining this too well. What i mean is, for example, if you have eaten a meal and need 6 units of insulin then you give the insulin. Then one hour later you are offered a piece of cake. You need 4 units for this but the pump will only allow you to do 2 because of active insulin but surely that means that you will be high later because you needed the 4 units for the cake but ony gave two. 

Anyway, please keep up your posts! They are so interesting.


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## Patricia (Jun 22, 2009)

Hi Mand -- appreciate the support! Though I suspect sometimes I'm boring everyone to tears with all this...It's just been a particularly complicated couple of days, maybe!

Re the bolus and active insulin: this is all worked out with your team. E has a max bolus of 14 units, at the moment set on 'active insulin 4 hours'. This means that he can't have more than 14 units of active insulin in him in the space of 4 hours... The level of his max bolus is taken from how much he has had at once (or split, as we did, with pasta etc). The duration of active insulin is something worked out according to guidelines -- apparently, many teenagers end up on 3 hours like E, because he eats frequently. This means he can have a lot of food in a short time!

We have never yet had a problem bolusing for carb, at all different times of day and all different amounts -- so his max bolus is right, I reckon. What we *have* had problems with is *correcting*, eg giving a bolus with no carb. This is down to the 'duration of active insulin' setting on the pump -- which was set for 4 hours and will now be set for 3 for us. What has happened is that the pump has not wanted to give more insulin with no carb to balance it *while there is still active insulin* (eg within 4 hours bolus) -- because it wants you to wait and see if you actually *are* high once the bolus has run its course.

We are changing our duration of active insulin to 3 hours in order to be able to correct a little sooner, that's the only real difference. On MDI anyway, we would never correct until 2.5 hours after a bolus, and I guess for us the same principle is what we want. Saying that, we've only wanted to correct with no carb once (this last weekend!) in two weeks...so I guess in theory, you won't need to do it much at all.

Does this make any sense?! I'll speak to the slightly more logical other half and see if this is the true picture...but it's what I think it's about, anyway!


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## Mand (Jun 22, 2009)

Yes, that does make sense to me. I think! I am learning so much from you and i really appreciate it.


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## Adrienne (Jun 22, 2009)

Hi
Sorry been away for the weekend.   Patricia you have had a weekend of it.  Just caught up with the messages.     

My first thought was the active insulin on board (IOB).   Loads of childrens are set to 3 hours.    They tend to start at about 4 or 5 but soon move to 3.  I was going to ask what E's was set at but now they have changed it to 3.   I only know one person who has 2.5 hours so that is fairly unusual.

What pump do you have, if my memory serves me correctly it is the Medtronic Paradigm.   They do work differently.   At least the Animas works differently to the Medtronic.   The Animas' IOB takes into account food bolus which I don't like and some people ignore that actually.   The medtronic doesn't.    The scenario that Mand has suggested ie lunch was x cho (carbs) and the wizard gave 6 units.    Two hours later you have cake or something and that is 40 cho so you put it in the wizard and the pump will give you insulin to cover that.    Because it was two hours after having the lunch insulin you can give a correction if too high.   The rules for pumping are that if you have had insulin within the previous 90 minutes you cannot give yourself a correction bolus.   If you forced the pump to give yourself a correction ie overrode the wizard you will more than likely hypo.   However if you eat within that 90 minutes you CAN have a bolus of insulin because it is a food bolus to cover the food eaten.   With the medtronic the pump will give the correct amount of insulin to cover the food eaten.    The Animas won't.   It will work out the IOB (regardless of whether you put in the BG reading or not) and it will minus some units from the food bolus.    This makes no sense.    It is suggesting that you have enough IOB still to cover the new food eaten.   Again no sense as the IOB is to cover the food eaten at lunch and you have just eaten more. 

Does that make sense or have I confused everyone further ?

What people say is that if you need to have more than about 7 units to cover a meal or food, do it in a couple of doses ie one before you eat and the rest after.   You can get overload and hypo.



Patricia - the 1.6 hypo.   I personally think it was the roast dinner.   Myself and lots of friends find roast dinners very hard to manage on a pump.    They hardly have any carbs ie just roast pots, perhaps parsnips but that is generally it unless E eats stack loads of veg that you need to count.    Jessica always used to hypo after a roast.    However saying all of that the hypo was a lot later.    I think you are right re the apple juice, maybe the insulin missed it.    If Jessica wants fruit juice she only has it at a meal time so I can include the bolus with the rest of the food.    Sometimes we don't even bolus for the juice if she is slightly low ie 3.9 or 4.1 before eating.

I'm sure I can answer loads more but am knackered and need to go to bed.

You are doing brilliantly.   

One piece of advice that has stuck with me from day one of pumping.   Our wonderful DSN said 'trust the pump', when you trust the pump you'll ok.    She's right.    I didn't understand to begin with.  I couldn't think that I would ever trust the pump, thought it a bizarre thing to say.   Well I say it now to all the people I know who start and to you to, trust the pump.   Its hard but trust it.    The amount of times I haven't and I have overridden the wizard and we have hypos galore.    If she ever goes over 22.0 that is the only time I override the pump and add on 0.5 units but anything lower than 22.0 and I never override.

Take care


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## Mand (Jun 23, 2009)

Hi Adrienne. Hope you had a nice weekend away.

I read your post with much interest. If i have understood you correctly then you are saying that with the Medtronic Paradigm (we are getting the 772) then we can give the correct amount of insulin to cover a meal and then enough insulin to cover a peice of cake an hour later and the pump will allow us to do this so that basically my son will have had enough insulin to cover all the food. So if we calculated the food correctly, in theory his blood should be fine. Is this correct?

The reason i am querying is that i seem to remember his nurse telling us that the wizard might not allow all the insulin for the cake to ge given if there is still too much active insluin around from the meal bolus. My concern is that is if you need 6 for the meal and 4 for the cake then you need 10 units of insulin in total or you will surely definately be too high later as you have eaten 10 units worth of food and so need 10 units of insulin. 

A similar scenario would be if my son ate lunch and had his bolus then went out to play with his friends. Then they see an ice cream van and he wants one like his friends so he has one and boluses for it. He will need all the lunch bolus and ice cream bolus or he will end up too high.

Sorry Adreinne, if i am a bit slow picking this all up. But the more i can get my head around things before he starts pumping then the more help i can be to him.

Hope you slept well and feel more refreshed now.


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## Adrienne (Jun 23, 2009)

Hi Mand

You have it spot on.  Your nurse is wrong where the Medtronic is concerned.  She would be correct if she is talking about the Animas.

We don't always do a whole meal bolus at the same time.   We know what Jessica is having for main part of the meal and we generally bolus before as she always eats everything on her plate.    However she doesn't always know what she wants for pudding so will choose, fruit, yoghurt etc and then we will bolus for that as well.   We don't put the BG in the second time, no need to as we have done it for the first time.

Don't think you are being slow, it takes a long time to get your head about what a pump does.   When you have your pump it will be so much easier to understand what us pumpers or pumper mums are talking about.  Ask anything at all.


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## Patricia (Jun 23, 2009)

Morning all

Adrienne, thank you so much for all your input -- invaluable. Hope you are feeling more rested today?!

Roast dinner is interesting -- yes, low carb. We've never really had probs with it, but I do suspect that the combination of ice cream at the end, then juice on its own, will have woven together to send him down....

Good to hear about the 3 hour active insulin setting being normal. That's what we are now on. 

Various changes in settings meant that he was rather high last night, although we did bolus him late for a snack (bowl of cereal -- teenagers!) with a small correction, and at midnight all was well (8). He woke on the same number, but at least we can chip at it downwards rather than picking him up off the floor! We think that the change in basal setting and dinner ratio was probably an overreaction -- clearly our team didn't like the mega-low hypo! Personally though, as I've said before, I'd rather get it right from the top down, rather than always scraping him up...

Oh, and the temp basal did the job with PE! He ran a little high all in all yesterday, but at least he had a break from hypos! Suspect that when the levels finally settle more securely, we will need to play with the temp basal setting as you suggest Adrienne, but even with this first venture it clearly helped.

Phew. Feel we are getting there again, which is a relief.

You're so right that it's hard to trust the pump completely. We are so used to calculating and making judgments, that it's hard to let things ride out. But every time we have trusted the pump, it's been okay. Things have settled.

Re number of units at once -- well, he can do 11 or 12 without a real problem! He's never done more than that at once, but this is a guy who can eat for England really at the moment. Last night the amount of food he put away was staggering: chicken filets and chips, beans, roasted tomatoes, yoghurt, small packet of biscuits, an actimel, and a bowl of cereal 2 and half hours later! There's a lot of carb there, but he has this sort of thing about once a week -- and LOVES it. 

Okay. For now!

All best everyone.


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## Mand (Jun 23, 2009)

Thank you so much Adrienne. I am so happy now that i understand. I feel kind of one step ahead already! I am learning so much from you and Patricia and we have not even started pumping yet! What i have learnt already means i feel a bit more prepared and will be less in the dark when we start. As you say, once we are actually doing it then it will all make even better sense! 

Glad things are settling down again for you, Patricia. 8 sounds like a good number to be at, not too high but not scraping him up off the floor either! I think it is so great that E can eat to appetite (and i know how much teenagers can consume!) and not have to keep having a jab, just press a button. Has he forgot to bolus many times? I think this is possible going to be a problem for my son. I can just imagine him forgetting sometimes. But at least if he does regular blood tests then he can correct easily.


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## Patricia (Jun 24, 2009)

Early bird morning -- my daughter off to France for the first time alone (a day only, but hey).

Yesterday's numbers okay-ish, but two clear hypos across middle of day (just before break, and just before lunch) -- despite us having already lowered that basal recently. This morning we will lower it again by 0.05u/hour for those three hours, and see what happens. He's been tending to dip that time of day ever since being on pump, yet rises high after breakfast: so at breakfast he is .85u/hour, and at 10am he switches to .70u/hour until 4pm. We will now slot in another rate of .65u/hour from 10-1pm. Ah the joys! 

Went to bed too a little high (10) -- he wasn't happy about that! But we wanted to see how things settled out this morning (the second morning on this new set of evening rates/ratios to deal with those lows from the weekend!) before raising basal a little again...Actually we've decided not to mess with the new lowered basal, but to revert to the original carb ratio for dinner and see if that does it. We both feel he needs the basal level at this slightly low level in case he eats early etc...Want to avoid a 'feeding the insulin' scenario.

I'm beginning to see now how basal does one job, and how ratios/bolus do another. On BB (thank you Adrienne! MDI as was...)there were elements of the background/bolus which seemed almost interchangeable. On the pump they are becoming much more distinct somehow, like the basal is a firm-ish pillow, off which the bolus is pushing to a higher level with each carb... (Yes I'm thinking beds -- it's 6am!). Then dropping back down to pillow level. The big difference I think is that basal is not there to accommodate ANY carb or deal with any temporary fluctuation in levels -- that's all bolus. Like with his two hypos in the middle of day (which have become quite frequent) -- he should be able to be hungry and not be actually hypo, because the adjustments on the basal are so fine that, although low before these meals, he doesn't bottom out. In the past, we attributed many hypos to being hungry -- and that's because on BB the background has to be considerably higher than you actually need, to cushion (bed again, sorry!) a number of situations and to account for the less efficient absorption generally.

Phew. Also wanted to say that the star also managed to do exceptionally well on all but one of his (10? 12?) exams, coming 1st, 2nd or 3rd in a class of 32, across the board. Because he's my hero, gets on, and in his quiet way, won't let anything stop him.


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## Mand (Jun 24, 2009)

He certainly is a star! Wow! What excellent results! You must be so pleased and proud! Well done E! I think he has a bright future ahead of him if he can get good grades at school and master the pump! Good for him! 

By reading your posts/thoughts I am slowling getting my head around the whole pump thing, so thank you so much. 

My son just not doing so well at moment. He going through a phase where he not interested in achieving good blood levels and he quite demotivated. I just hope the pump makes the difference. He is a good lad, bright and has many friends but i think he struggling with the fact that he has 'd' at the moment. He so fed up of the injections. It just breaks my heart but, chin up, the pump might just make all the difference!.


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## Patricia (Jun 24, 2009)

Mand, I think the pump will make a HUGE difference to your lives. Although there is this inconvenience of a 'thing' on you all the time, the compensation for quality of life is just enormous. Simple things like not having to go to the medical room at school for the lunch injection. Being able to accept sweets/biscuits from friends (which we haven't done yet because his carb counting there isn't rock solid, but it will come), deciding as and when what he wants to eat... And no injections. Life moves along so much more smoothly as a result, honestly. You asked a couple of posts ago how many boluses E had forgotten -- none, actually. He's nearly forgotten several times, and had one or two times when he remembered after he ate -- but other than that, fine.

Also, I think any change is motivating, to be honest. When we first got the pump, we all sprung into action and had a great time. E actually suffered a little 'let down' after it was all up and running -- 'now what' kind of thing -- but he's fine now, looking forward to other things in life rather than things to do with diabetes.

Your son will also find better numbers more in reach, and that itself will feel good and probably make him press on through the adjustment period.

Hang in there Mand. Not long now before it's all change and everyone will be re-energised.

(E woke on 8.8 this morning, just for the record. His reading of 10 last night was actually taken earlier than normal for him, so not surprised it dropped 1.5 mmols. We are going to switch the dinner carb ratio back again, and see if we can get him down to waking at 6-7mmols, which is ideal...)


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## Mand (Jun 24, 2009)

Thank you so much Patricia. Your words certainly do give me strength and hope. Roll on 7th July! 

I just off to have a shower then an appointment at the local beauty place for a pedicure, ready for my hol. I think the treat will cheer me up a bit.

Look forward to your next post.


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## Patricia (Jun 24, 2009)

Stupid question Mand, but where do you go for a pedicure?! I've never had one and quite fancy it...But I'm worried about 'fly by night' places, like so many nail salons are...

Take care and enjoy!


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## Mand (Jun 24, 2009)

Hi Patricia
Just returned from my pedicure! Would highly recommend you have one! I go to a local beauty shop in our town with fully qualified beauty therapists. 

My feet were soaked in a foot spa, nails cut, filed and polished, hard skin on feet removed and cuticles sorted, then a foot massage using moisture cream and finally nails painted including a base coat and top coat. Tempted? Go treat yourself! You deserve it. My mom bought me a voucher for Christmas which i had deliberatley kept so i could use for a pedicure for my hol. My feet look good and feel good! It is a real 'pick me up' kinda treatment!

Anyway, back to the subject in hand, what does E keep at school now he on a pump? Do you keep anything in a fridge at school?


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## Patricia (Jun 24, 2009)

Thanks for the heads up about pedicures! Love the sound of them; will investigate...(are you N American btw? Use of 'mom'...I am American.)

Anyway: we haven't quite sussed what E has at school. Just the usual at the moment: eg pen, glucose, snack, glucogel etc locked away in cabinet. He carries an extra novorapid pen and insulin with him in his bag. I think we have sort of decided not to send him with extra set change etc quite yet, because he could get home v quickly and we both work pretty nearby and in jobs we could leave quickly. Eventually though I guess we'll send him with set and reservoir change. You can use the insulin vials in pens to draw the reservoir insulin, so I don't think we'll send separate vials. And no, we don't keep anything in the fridge at school....


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## Mand (Jun 24, 2009)

Hi Patricia

I am English but often use mom rather than mum. 

My son not allowed to carry novorapid and needles with him (school rule) so it is in the school office along with Glucogel, extra Dextrose and biscuits. He does carry with him his blood testing kit, Dextrose and biscuits.

This is another area when the pump will be better because lately he has not been coming home after school, instead he goes to the park or his friends house and he has no insulin with him. So at least with the pump he will always have insulin with him in case he wants a snack.

Do you mean that you keep a spare,filled reservoir of insulin at school in case his current one runs out? If so, then if he does not use the spare reservoir within a month then you would change it because it can only be out of fridge for a month? Is that correct?

Sorry to give you so many questions! It is just that you are one step ahead of me. After my son has been on his pump for a few weeks we will be more equal and then i hope to help you as much as you help me!


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## Adrienne (Jun 24, 2009)

Hi Mand

I think Patricia means that E has an insulin pen with NR in it in case the pump fails so he has a pen if necessary.

We stopped carrying all of that with us eventually.   If I am going away for the weekend, then yes I take a pen for NR and a pen for Lantus and all the needles and cartridges of insulin just in case, you never know.

There isn't a spare set change at my daughter's school either nor insulin pens actually.
I live very near to the school.


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## ruthelliot (Jun 24, 2009)

*pumps in toddlers?*

Hi, can I ask if anyone has any idea how feasible a pump is in a 2yr old - ie. is it fairly easy for them to ignore, how easily is it dislodged. We're hoping to be referred for one in July so trying to learn as much as possible. Feel control at the moment is out of reach - not sure how good we should be expecting things to be but having at least one hypo every other day but often 2 a day. the weeks without hypo's invariably have the same number of readings 14+.  Most folk i've spoken to think a pump will give better control and my diabetologist friend (unfortunately not in our hospital) thinks for children its the only way to go. Must admit it sounds a bit daunting but would do anything to get on an even keel - though i fear another change may mean all babysitters disapear off the face of the earth - here's to quiet nights in!!
Ruth


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## bev (Jun 24, 2009)

HI,
Yes it is absolutely feasable for a 2 year old to have a pump. I am on another forum for children with diabetes, and there a lots of toddlers on pumps and they get used to wearing them very quickly! Also, it may be easier to get a babysitter as they wouldnt have to do needles! lol. I have been on holiday with 38 type1 children and have seen toddlers wearing pumps and climbing trees and jumping on trampolenes etc - just like a 'normal' child would - pumps are very robust and very rarely break, also the very worst thing that could happen is the canula comes out - but the sticky stuff holding it on is very good so it would be quite rare for this to happen. I have also seen a few teenagers wearing them and play fighting etc - no problem at all! If i were you i would bite their hands off for a pump - i am desperately trying to get one for my 11 year old son. Bev


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## Adrienne (Jun 24, 2009)

Hi Ruth

Totally agree, the younger the better.  If our children were in Europe they would be offered a pump with no problems.  Infact I think either in Sweden or Denmark they just put them on pumps immediately.    

I know lots of tots who were on pumps.   They wanted my daughter on one at 6 months old but the local hospital blocked it, back then it was harder than it is now.

You can get comfortable harness' so they can wear them on their back and they don't even know its there.    Take a look at :

http://www.angelbearpumpstuff.com/s...46E2C5C4-A4D1-4F04-BFBBC278038D5E3C&killnav=1

and

http://www.pumpwearinc.com/index.php

These are just a couple of the companies I have used, there are loads more.

Go for it, if she starts now, then she will grow up with it being around her and she future due to better control will be fab.


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## ruthelliot (Jun 24, 2009)

*pumps in toddlers?*

Thanks for that guys. Ben has been very accepting of everything so far so I did think any major changes would be best made now. Was speaking to canadian doctor recently and he was horrified that kids aren't automatically started on pumps as thats they way they do it too. Did have my doubts earlier today when i had to rescue him from the botttom of a tangled heap consisting of him his 2 brothers and the dog but i feel somewhat reassured now. next appointment on 2nd july so will see how we go.
Ruth


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## Mand (Jun 25, 2009)

Thanks Adrienne. 

Hi Ruth, as has already been said, in some countries (inc Canada and Sweden) kids are automatically put on pumps. My son (12) due to start on one 7th July. It was not easy to get one so if you are offered one then i would seriously think about it. Because Ben is so young, he would grow up with it being a normal part of his life and would have good control from a young age which can only be a good thing for him. 

If you do get one then we can all compare notes! I have found Patricia's and Adrienne's posts so invaluable and we have not even started on the pump yet!


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## Patricia (Jun 25, 2009)

Hi all

This is so exciting! So much pumping! Ruth, the only thing I can add is that truly the sets do seem robust and easy to manage --as per earlier post, the pump (too!) frequently gets left behind when my son stands up, and even dangling there it has never dislodged at all -- just a little 'ouch', then sorted. Also, and this was one of my secret fears so I'm glad all has worked out -- the sticking stuff for the cannula is just brilliant AND has not caused any reaction. Both my son and I have allergies to various 'hypo allergenic' plasters, both having ended up with blisters from the super duper good stuff in hospital. Oops. But this has caused no problem. Taking it off is not so great really, but he's now getting quite blase, and I think that with the 'count to three and rip it off' approach (like you do for plasters), it would be extremely simple. My son does tend to 'tease' it off, which I'm sure is more painful...

When my son was first diagnosed, we contacted via a friend of mine in the States, a very high up and experienced pediatric endo -- former president of American Diabetes etc... -- and she was quite appalled that the UK seemed so far behind for pumps. She said that literally everyone in her hospital was put onto pumps *from diagnosis*. She also indicated that her research showed (anecdotally, mind) that excellent early control seemed to prolong the honeymoon period -- and as we know, ANY time of good control contributes to future health.

Anyway, she was a real inspiration, talked to us while making her coffee and heading out the door to work...she lived and breathed diabetes, and helped spur us to action...

Update on numbers this end is that midday hypos have gone (yay!), so we'll watch that over next days. The super-reaction to his massive low last weekend needs shifting down, so we are reverting fully to previous ratio tonight for dinner -- last night he was at 14 at 9.30pm, so we were forced to correct (under correcting from bolus wizard), trying 1 unit. At 3am he was only down to 11, so we did a small correction again. This morning he was at 9 -- still too high, but what this does show is the incredible stability now of his basal rate at night: he responded almost exactly as he is 'supposed to' to corrections in the night. As Adrienne says, we probably should have trusted the pump, which said to give him 1.2 units at 9.30! We've never encountered this, have always found any extra insulin to just make him plummet...So a useful learning thing.

Adrienne, I've a question for you: do you bolus last thing at night ever? So far we always check if there's been a last minute bolus, either for correction or for bedtime snack -- do you bolus last thing, and if you do, do you test 2 hours later regardless?

I must confess that I'm now wondering if he actually *could* bolus for a small snack or small correction without having to be tested. Last night we were just all on our knees; what we wouldn't have given for a night of undisturbed sleep!

Also, Mand, to answer your question from some time ago. He is now testing bgls at breakfast, at 11am (snack time), 1.45 (lunch time), 4.30 (return from school), before dinner, and bedtime. At least. But this is his usual routine, even on MDI. I would say it's more than likely that he tests at least another two or three times in the day. At the moment, most night we then test him either at 12am and 3am, or just at 3am. Several nights we've not tested, but that has been when he's a) on a good level and b) has no significant active bolus insulin in him.

Okay. To the garden!


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## Adrienne (Jun 25, 2009)

Patricia said:


> Hi all
> 
> 
> Adrienne, I've a question for you: do you bolus last thing at night ever? So far we always check if there's been a last minute bolus, either for correction or for bedtime snack -- do you bolus last thing, and if you do, do you test 2 hours later regardless?



Ahh right, well what I am going to say is not the proper protocol.   Jessica has sensors and from midnight I can just look at the sensor to see what she is rather than test her unless it has alarmed she is getting lower then I test.

I correct anything over 10.0 (when the pump rules allow me to that is).   So if at say 11 pm she is 11.0 I correct and I stay up till midnight and test her again.    However if I test her at midnight and she is too high ie 11.0 I correct but I don't deliberately get up and hour later to test.   The rules say you should do and whilst you are tweaking things you definitely should do.   

However I always end up waking up anyway at some point in the night and going in and checking her - well looking at the sensor.  The majority of my friends all test over night, you just cannot guarantee what is happening and especially to a growing child.   Its a hard one.

Occasionally when I am totally done in and she is say 13 or 14 I won't correct and I feel terribly guilty but I need to sleep.   If I don't sleep sometimes I am not good to my daughter in the day at all.   This doesn't happen often but I do that occasionally, don't know anyone else that does but when you are a single parents needs must.  I would be no good to my daughter if I was ill.


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## Mand (Jun 25, 2009)

Thanks Patricia. We testing around that many times at moment. Think we will need to do one or two more and certainly in night too at the beginning.

Sounds like you still doing well and learning how to tweak things. Keep up the good work! Hope you got to do some gardening!


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## Patricia (Jun 26, 2009)

More and more gardening underway today, though showers predicted -- we have 30 for dinner tonight! Ack. Department end of year thing.

Numbers looking good, though a little high yesterday morning (9,11), a hangover from waking up a little high. We'll see what today holds. However there was also another mild hypo at the 'usual' time of 1.30pm -- frustrating! Will leave it as such for the moment, because not every day is the same of course...But my instinct is to raise carb ratio from 1:10 to 1:12 or something; he has a snack at 11am, and this adjustment may see him to lunch...

Woke on 7.5 this morning, after a 3 hour pasta dual wave last night. Unheard of on MDI, when he used to invariably wake on 10+ after pasta the night before. Was at 10 after the 3 hour dual wave, then must have dropped slightly after (which is what happened last time) and stayed there...all night.

For now! Also, more boasting: just had text from him. Top of class in English. He had a rocky year last year in English, even though it's always been a strong subject...lots of different teachers. He had come to believe he wasn't good in English, though we felt in our hearts of course that he was really so good at it...Anyway, after the teacher has stabilised this last term, he's just thrived. So delighted for him, such a boost. And all this while starting the pump. Again, I take my hat off.


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## Patricia (Jun 26, 2009)

Shoot, forgot to reply to Adrienne -- many thanks. We are on the list for a sensor, because it would indeed help so much.

I think you are right to keep the balance between yourself and your child. You simply must. And a cranky, ill mother is not a good trade. She needs you as her mother as well as her carer. 

But you know this.

Adrienne, I'm sure you are doing a really amazing job. Get yourself some sleep when you can.


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## bev (Jun 26, 2009)

Patricia, just wanted to say 'well done ' to E! He really is a star - dealing with the pump and his exams etc. You have every right to be a proud mum!

Hope your dinner party goes well - whats on the menu?Bev


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## Adrienne (Jun 26, 2009)

Well we had a night of it.  Jessica was in the 19.0s and 20.s all night and woke at 26.9 eek.    For some stupid reason I didn't change the cannula and took her to school.   I ended up ignoring the wizard and giving 1 1/2 units and putting on a 200 % temp basal for 2 hours.   She came down to 18.8 and by 12 noon she was 9.0 !!!   No idea what is going on unless she is coming down with something - oh joy !


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## bev (Jun 26, 2009)

Oh no - i hope she isnt Adrienne. Could it be possible that it was growth hormones? Or would there be a more slow and steady increase? I obviously have no idea as Alex has nearly always gone high overnight! Bev


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## Adrienne (Jun 26, 2009)

No not growth hormones, not like that.   Of course we overloaded her with insulin and she came down to 4.1 after lunch so they gave her coke to be on the safe side and that combined with school dinner fish and chips and she is back up to 15.9  eek.  Oh well will do a site change now (not told her yet but will numb area with a sugar free scooby doo ice pop in its packet and then she can eat it - first time trying that).


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## bev (Jun 26, 2009)

Where do you get the scooby doo ice pops from? I have been looking for these sort of things for Alex. Bev


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## Adrienne (Jun 26, 2009)

Ooo I don't know, probably Tescos, can't remember, had them a while now.


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## Patricia (Jun 27, 2009)

Hi you guys

How's Jessica this morning, Adrienne?

We're fine here, if a little, ahem, hung over. Bev, menu was: sausage and lentil casserole, roasted half peppers with mozzarella/anchovie or toms/basil, grilled courgette, salad with green beans,pine nuts, potato salad (oil/vin shallot dressing), plus plain stuff like new pots, cold meats and salami, various cheeses, grapes, carrots, sausages...pudding meringues and fruit...This is all husband cooking -- he is an absolutely wonderful 'chef', and cooks everyday as well as this fancier stuff...

ANYWAY. Can't be that hung over if the food still sounds good!

Portion estimating went well too last night, with E mostly sorting it out himself. A low carb meal generally, ended up on 5.4 at bed, a little low still to feel comfortable. Don't know what he is yet this morning.

Question: I may put this on a separate thread, but has anyone experienced the sensation of being 'low' on and off all day, and not being so? E has had this for two days, feeling like he's hypo and he's not, to the point of feeling wobbly etc. He tests at 5.5-6.5 and is not dropping. However, when he then eats (and boluses) he does begin to feel much better...I wonder if he is going through a really hungry stage? Twice it's been last thing in afternoon -- he feels really ill but isn't hypo -- then eats quite a bit (before dinner!) and feels somewhat better. He hasn't been that high (sometimes 9 or 11), so I doubt it's a 'false hypo' type of situation. Any ideas?

For now...


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## Northerner (Jun 27, 2009)

Patricia said:


> ...Question: I may put this on a separate thread, but has anyone experienced the sensation of being 'low' on and off all day, and not being so? E has had this for two days, feeling like he's hypo and he's not, to the point of feeling wobbly etc. He tests at 5.5-6.5 and is not dropping. However, when he then eats (and boluses) he does begin to feel much better...I wonder if he is going through a really hungry stage? Twice it's been last thing in afternoon -- he feels really ill but isn't hypo -- then eats quite a bit (before dinner!) and feels somewhat better. He hasn't been that high (sometimes 9 or 11), so I doubt it's a 'false hypo' type of situation. Any ideas?
> 
> For now...



I do feel this on occasions, and it's always down to hunger - usually because I've been out running and for some reason it's made me hungrier than normal. I usually test at around 5.x when it happens and it's really hard to spot the difference between that and a slow-moving low - I normally expect to see something like 3.x on the meter!


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## Iris (Jun 27, 2009)

Hi Patricia,
Thanks for all this useful information on the pump that has come out of this 'thread'. Iam still trying to come to grips with all the lingo and how it works. But it has been really informative sofar. I have been offered to go on the pump because of all the bloodsugar swings I am experiencing at present. I now understand a bit more what it involves with the carb counting, bolus and basal insulins and how fast something food can be absorbed. The scenario you describe where the pump was dangling down because the tube got caught by the doorhandle, is just something that would happen to me. 
Thanks again and good luck with it all
Iris


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## Patricia (Jun 28, 2009)

Thanks Northerner and Iris -- helpful info about these 'ghost' hypos, Northerner. E does have a very fast metabolism, so I think this may be it for some reason at the moment. He also recently has not felt hungry particularly -- but then when he sits down to eat, is ravenous. To be fair, this is a scenario I recognise with him from before diagnosis -- his father does it too! Perhaps things are settling more than I think or see clearly -- so he's getting back more to 'himself'? He's certainly put on a little weight, looking healthier, so that's all good!

Iris, I wish you luck with the pump. How long have you been type 1? I have to say that although we've had moments of confusion and near-despair with the pump, they are not *nearly* so frequent as when we had them with MDI. Also, although we may feel a bit at a loss at times (will explain either later in this or tomorrow's post) -- the cold reality is that E's numbers have been enormously more stable, particularly in terms of hypers -- I think we've had about 5 numbers over 14 in three weeks. Unheard of before... High for us now is 10+! It's a whole different thing...

Will report back on weekend tomorrow. Generally very good -- but, lentils? Are they a disaster with bgls? Wonder what others' experiences are...We had two days of lentil eating for a meal, and things went a bit crazy, even though we tried to 'square wave' it...More tomorrow!


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## Iris (Jun 28, 2009)

Hi Patricia, I have been type 1 for 16 yrs diagnosed when I was 31. I have managed ok up till recently with the occassional high bs and hypos. never passed out yet. But in the last 1.5 yrs my BS has has gone in the 20's regularly. it tends to go high before my period and I then go from one hypo to the next once I have started my period and in the week after. That sounds very predictable when i am writitng it. But I get unpredictable highs. I moved out to Suffolk from London 5 years ago and not seen a DSN since (had regular support in london form dsn's). Finally this doctor said I should see a DSN and he suggested an insulin pump. I am a bit shocked by this because I didn't think i fit the criteria, but appearantly i do.
How bad was E's diabetes control befor the pump. Were his hypo's severe? I can't beleive I get offered an insulin pump so easily when other people who probably need it more than me should have had one ages ago and have to fight for it. It seems the ussual postcode lottery.
Iris


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## Patricia (Jun 29, 2009)

Hi Iris
Yes I'm sure it is the usual postcode lottery. But I think the thing to remember is that across the country there is a general move toward trying to get people on pumps, as far as I can see...They are the acknowledged way to go for good control, as long as people are up for carb counting and the initial hard work of it... 

E has had no severe bouts of anything, and has  been diagnosed for a very short time, since Nov 08. He does have low lows more frequently than we would like -- 1.7 etc, but has never passed out or anything drastic. His HbA1C hasn't been great, but is better than many -- 8.5 -- but what seemed to swing it for us was his and our motivation to get going on it all quickly. Our local PCT had just started pumping, had a long queue of people to train up, but had the money -- so we took the money elsewhere, to a larger centre with capacity and fully trained folks. 

I agree that there are SO many people fighting hard for pumps -- but I think they are coming. So I wouldn't feel too bad about going on one if you are offered it. Certainly they are fairly life-changing!


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## Patricia (Jun 29, 2009)

Weekend was weird ish, though generally good levels...It's strange how the odd numbers loom so large though, like they symbolise *everything* going bonkers, indicate terrible disaster -- but of course, they don't.

At the moment our main weirdness is that three mornings in a row E has woken high -- Saturday morning (12), Sunday morning (17!) and this morning (14). Just TOO odd. Yesterday we thought maybe lentils were playing havoc with things -- he'd had them Friday evening, and Saturday lunchtime. Friday we dosed them normally, but he went to bed lower than usual -- 5.4 -- so gave him some carb. Woke up surprisingly high though, even for that. So Saturday we dual waved the lentils, changing the balance of the meal so that most of it was covered by normal bolus, then a certain percentage of it (I think 40%) was covered by a dual wave over three hours. We wanted to see if this dealt with the lentils. It did seem to, so we were quite proud of ourselves -- but then after going to bed at something like 9, he woke yesterday on 17! We were shocked.

(Both mornings we corrected before food, though ate quite soon after. And both mornings, he had a hypo, one of them very low indeed. This worries us a little about the pump and correcting on an empty stomach -- could this be an issue?)

So -- yesterday, no lentils! Played safe and evening dose of pasta seemed to go well: at four hours, one hour after dual wave, levels at 6.4 ish. Had half a glass of milk. One hour and half later, he was 7.6. Delight. We fully anticipated him waking on 6, as per last week or so and steady levels. But no, woke on 14.

I've asked on another thread about the effects of heat, but as far as I can gather it's much more likely to bring him down? Which may partly explain last week, Northerner, and feeling low without being low... So what the heck is this?!

He's going away to France for three days on Wednesday. We are trying not tear hair out, but are now feeling like some control is slipping... If we need to, we will leave him high I think, but messing with his night basal is the last thing we wanted to be doing at this stage...

Poo.


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## Sugarbum (Jun 29, 2009)

Oh my goodness Patricia, Im sure this will be a testing time for you all when you are planning for E to go to France and when he actually goes. Especially with this heat. 

My instincts would be not to mess with his basal either just before going, heat, activity and different food could cause him trouble in his BMs. I really hope it all works out well.

I think I have said it before (maybe it was to Bev and not you?) but I am full of admiration for you parents, I can only imagine it being very stressful and you seem to cope so well. Hope you and E have a good week and those sugars settle down.


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## Patricia (Jun 29, 2009)

Thank you Sugarbum. I think we'll play safe whatever we do -- hard enough for him to be going away for the first time ever, not to speak of with diabetes...But it's so important that he be able to do these things. My husband though has managed to arrange some work time in a nearby village. None of us, E included, could quite deal yet with being several hours away.

We have been asking E to estimate carb for the last few days -- and I have to say he's really quite okay at it. We've been mildly surprised, because we have tried to take this aspect of things easy with him -- so much to deal with. We are stressing under-estimating when he doesn't know for sure (eg in a restaurant), and no matter what his level, not bolusing last thing at night, as in our experience this can lead to out of proportion dips for him. He also knows to use his 75% temp basal rate if he just seems to be running low -- whether in day or night. Again, this is the use of the pump: he doesn't have to take a dose and live with it for 24 hours -- he can adjust things at any time.

We are also sending him of course with a Collins gem, and making a crib sheet for him with large/medium/small bowl pasta counts, potato counts, rice etc...Just as a starting point!

How do you react to heat, Sugarbum?

As for coping... There are times when I find it almost insurmountable. I think that must be true for everyone. I am fortunate in that my marriage is very strong and long-lived -- we are in this together -- and that we have been through considerable medical hardship before, and bereavements. This all I think enables a kind of 'head down and carry on til you can breathe' thing when times are bad. Which they really can be. Thanks for the kind words in any case; they are appreciated!


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## Patricia (Jun 29, 2009)

Can I also say one more thing. Babbling alot this morning on this, so apologies if you're bored stiff.

Just that: despite our wobbles, E is well in himself. Yesterday he performed in a solo piano concert for the first time since diagnosis. The last time he performed was in a competition, four days before diagnosis. He won every category he competed in, and also won the overall prize. Within four days he was diagnosed, and in hospital. 

So it was really something, a moment, when he performed again yesterday, and beautifully. 

I guess part of adjustment is getting used to living on wobbly ground -- not falling off, but walking along it, remembering what you came here for....


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## bev (Jun 29, 2009)

Hi Patricia,

Sorry things seem to have gone a bit pear shaped! 
As you know we have been battling with high levels for waking levels with Alex.
The only advice i can give you is - check through the night to find out if it is a slow and steady rise or whether he is perhaps having a hypo and rebound?

I personally think he is having a growing spurt - the same is happening with Alex.
But the beauty of E being on a pump is - it should be easier to resolve - rather than waiting for 3 weeks like us and increasing the levemir by half  a unit every three days!
3am seems to be the time the research suggests is a good time to check! Sigh. But it will be worth it to find out exactly what is happening and then increase as necessary! Good luck and let us know what you decide!Bev


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## Patricia (Jun 29, 2009)

Yes, I think we may just be in the boat of upping his night basal too...but as you say, it's so straightforward and quick with the pump. Just bad timing! 

I confess Bev that when E went through a growth spurt back at Easter and was running so high, we upped the basal by 20% every two days! It was a bit drastic, but it seemed to be having so little effect and he was so high...It did the job after two rises.That was the week in which his insulin requirements went up by 50%!

And yes, 3am check. The only one that could possibly be hypo is the last one, because the pump basal is such that there is no peak etc at night, so a fall from 10 to 2 then back to 17 would be virtually impossible on it. It *may* be possible to drop from 7, then to 2, then back again to 14? But I really doubt it. Suspect it is gradually climbing...

Sigh, yes.


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## Patricia (Jun 30, 2009)

Hiya

Just a quick one to say that with a TINY adjustment last night -- up by 0.05unit/hour -- E woke on 7.4, having gone to bed on 7.6. Fab. How and why? No idea. Such a tiny shift.

Temp basal, as predicted by Adrienne, proving *extremely* useful over last day or two. Switched himself over to it after PE yesterday afternoon -- no hypo. In fact, perfect numbers all day.

And today, he's out of routine doing a languages day -- in this weather! Anyway, have told him that if he doesn't get his usual 11am snack, stick himself onto temp basal for a while. We've discovered that hunger will just as likely send him low, of course....So we'll see.

Feeling more confident now about France. Feel we've turned some kind of invisible corner. Some of this is his increasing ability to carb count -- so much less chance of majorly over-shooting. And that feels so much better.

Temp basal is a godsend. Should put that on a t-shirt....


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## Adrienne (Jun 30, 2009)

Yep we all love the temp basal and when they are ill it really is a god send.  You can increase it to 200 % for as long as you want.   You can even set one of the patterns for the 200% amount and then put that up 200 %.   You can do loads.


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## Patricia (Jun 30, 2009)

His day included 2 hypos -- both caught in routine testing, ack! One when he was already on a temp basal...SO basal rates now being lowered for the moment while we get him through this, and THEN make use of temp basal on top of that...Lordy. It's the weather, I'm sure. 

Argh. But should be okay.


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## Patricia (Jul 1, 2009)

Despite one of the worst nights imaginable last night, E is in France and well. He fought low numbers all morning despite being on a lowered basal AND a 75% temp basal, and we have yet to hear his level tonight. But he's been in good contact with his dad, and all seems very settled. He *has* texted to say he's having a wonderful time. Which is worth everything.

The worst night imaginable came from how wrong simple things can go: set change, and suddenly he can't re-connect the little pipe, having fiddled a little and unclipped it. He can't and can't re-connect. So poor thing has to start over. Remove this one and do another. But something goes wrong with that too. Tired, packing, apprehensive. All falls apart. Third time lucky and all is in, but he is wrung out like a wet rag, and we are nearing meltdown with frustration and helplessness that he has to do this and we don't/can't.

He comes upstairs though and says he's okay, alright, though I'm thinking if I were him I wouldn't be. He packs, we talk, and he goes to bed.

In the night, as I say on the other thread, we wake to this huge bang bang. The pump has fallen down behind his radiator, and in his sleep he's trying to recover it. I imagine the set being pulled out, or at the very least, not working...This doesn't happen though. As the morning goes on, from his texts clearly all is well.

Part of the stress last night was the sheer thinking through of what needed to be brought with, how to store it and when. The fact that he needed to remember to store the insulin in the fridge. Does his dad bring a set change too, or is that just silly? What bag will he carry his juice and glucose in? Can we fit it into his luggage? Will he remember to shift this stuff actually into the bag on the bus? 

I *thought* I'd worked through everything, so that the packing would be smooth. But I hadn't, as what he wants to do also plays a part. So we had to make it up as we went along, come to agreements, leave the little bits, stress the big ones...Sigh. It was all I could do to keep from texting him every half hour this morning. But I resisted.

This afternoon I returned from a lunch out with my daughter, and went straight to sleep. I'm assuming, have to assume, that all will be okay.


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## Patricia (Jul 2, 2009)

Went to bed on 7 (reporting in at 11.30pm! eek!), stayed on 75% all night. Woke this morning to 7.9 (good on ya', boy). On 75% today too, but has reported mild hypo, so his dad has asked him to go to 50%. He's walking around all day, swimming this afternoon. Incredible the effect of heat and exercise!

Good boy though.


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## bev (Jul 2, 2009)

Patricia, those levels are great arent they? Does E make the decisions himself about whether to do a 75% etc?  He is doing brilliantly and so are you as i do know how hard it must feel to have him away so soon after pumping!Bev


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## Patricia (Jul 2, 2009)

Hi bev, good to hear from you -- was feeling lonely!

He made the decision yesterday to go to 75% as soon as he was fighting morning lows. He also made the decision to stay on 75% last night, but double checked with dad. Today's move to 50% is dad's request, and we're checking this with DSN. The swimming this pm is a little worry, as he's *always* dropped when swimming. This is where one of his teachers has been somewhat primed -- E must check his levels every 40 mins or so. The swim is apparently a long one, and great day for it, but... Being off the pump for that time may help balance things though -- be interesting to see.

He *is* doing so well. I'm feeling better, and know this is an experience to build on, as a good friend of mine said. So good for E to do it.

Thanks Bev!


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## bev (Jul 2, 2009)

Patricia,
Just to let you know - i always read your posts on pumping - i just dont always comment because i have nothing to compare it to - yet!

Do you think you are less worried with E being on a pump and being away in France, as opposed to him being on MDI and being away in France? Perhaps its early days for you to give a definate answer?
Alex has a day planned with his new school in september - a full-on day of activities - nightmare trying to think of all the 'rules'! Also dont know if he will be pumping or on MDI by then!Bev


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## Patricia (Jul 2, 2009)

Yes, I guess on balance I am less worried with E on pump -- and the basic reason is because the pump is SO much more flexible than MDI. He can change it minute by minute, and the effect will be within an hour...Whereas on MDI, he would have to deal with whatever decisions he made 24 hours ahead of time for levermir and 3 hours before with NR. We felt more nervous about the technology of it -- more to remember -- but the actual results of it are much more predictable, so all in all much easier. The wizard is good too for helping him understand his targets, calculate his doses, etc...so he is doing none of this in his head as he would have to on MDI. He tends to check it -- knowing his ratios, etc -- but lets the pump calculate everything and sees if makes sense...This is a huge relief, because the potential for real error is enormously reduced.

So yeah. Pump definitely less stressful. And in France all children are on pumps anyway, so we did think oh well if something happens, at least the medical staff would know what the heck it was!

Thanks bev. Glad to know you're reading. I just don't want to be boring everyone to death.

xxoo


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## Northerner (Jul 2, 2009)

You are certainly not boring me Patricia! Even though you are in a very different scenario to me, I find all your reports of great interest, so thank you for taking the time to write them up.


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## Patricia (Jul 2, 2009)

Northerner, thank you. Appreciate it. 

Report from the front is that swimming has happened without real hitch -- one hypo, dealt with. He is still on 50% temp basal. Phew!

Now my maternal agitations are revolving around much more usual things: I didn't send him with suncream! And he's *really* pale, bless him. Not that any boy, I imagine, of 13, with friends, would deem to put the stuff on... But he could be burnt to a crisp!

Will parental worry never end? Before you all join in, I know the answer is 'no'....


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## Adrienne (Jul 2, 2009)

Hi Patricia

I read all your posts as well as obviously pumping interests me and I just want to help everyone.   If there is anything I can help with I will always reply.   You are doing fantastically.   I think you are an amazing person with a lovely son who is obviously very responsible.


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## Patricia (Jul 2, 2009)

Thanks so much Adrienne. Not sure I feel amazing at all -- but I do know my son is!

Glad to know you are still reading. As long as it's all okay, I'll keep going -- soon to be joined by the ever-entertaining Sugarbum!


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## Patricia (Jul 2, 2009)

Late evening check in again -- mild panic, but really just mine, he's a sensible young man -- 9 mmols. Some kind of temp basal arranged with dad. All seems well. SO glad he's been able to enjoy this. The confidence it will give him is immeasurable I imagine....

All this means too that his own dosing has gone well. I've just realised this. He's dosed his own breakfast lunch and dinner OUT at restaurants, and ended up with 9 at the end of the day! Wow!


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## bev (Jul 3, 2009)

Patricia,
Thats brilliant news! He is obviously confident at carb counting which is excellent and will stand him in good stead for the future. Can 'E' come and shadow Alex when he starts pumping? lol. You must be very proud of him and rightly so.
Alex has started to guess the carbs in a lot of foods now - sometimes he is spot on - other times not! Once i have weighed something like rice, i get him to guess the carbs without letting him see the weight - he is getting a bit better at it - and will usually air on the side of caution which is probably better than over-estimating!Bev


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## Patricia (Jul 3, 2009)

Morning... Yes I'm sure that under-estimating rather than over is the way to go -- and I suspect this becomes reflex. With a pump too the correcting later is much more accurate, so you don't feel on a slippery slope if it goes a bit wrong -- much easier to catch up with things later...

He woke on 8.9 this morning after a night at 60% -- compromise with dad, apparently! 

One thing I forgot to say is that we also temporarily shifted his target range to 7-8mmols, to keep him a bit higher. Not sure if that worked, but seemed a good idea at the time! His range is normally 5.5-7.5 I think...

Good for Alex in guessing carb -- the freedom to do this is so welcome, isn't it? I'm sure it's never a perfect science, but feeling comfortable with it is a start...


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## bev (Jul 3, 2009)

Patricia, can i ask a simple question? Where do you get the sets, tubing insulin from? Is it all from the gp or from the hospital! I only ask as my chemist is a new one and i was telling them about the pump etc and they are not certain who supplies what! Thanks. Bev


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## Adrienne (Jul 3, 2009)

Hi Bev

If you go for a Medtronic one and I can only speak about them what normally happens is you ring Medtronic direct, they are very nice and normally good, order what you want, 3 months worth of stuff at a time, a courier delivers it to your door.  That's it.   Medtronic send the bill to the PCT direct or via the hospital.  You order the pump tubesm canulas (all joined), reservoirs, batteries etc.   I also order the sensors, sticky things to go over them and I think thats it.  All very simple and straightforward.   No chemists involved.

If you want Cavilon or Lift Plus then that is on script.


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## Patricia (Jul 3, 2009)

Exactly! We haven't ordered anything yet, but the hospital gave us all the contact details etc...


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## Adrienne (Jul 3, 2009)

Don't wait till half way through the last box Patricia.   Order just before you open the last box of whichever then place your order.  Don't forget batteries, I always do.


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## Patricia (Jul 3, 2009)

Oh lord you're right Adrienne. We've been so fraught I haven't even sorted out where to store things, so it's all dangerously chaotic...Okay will look at things...

Thanks.


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## Adrienne (Jul 3, 2009)

I have had to use one and a half cupboards in the kitchen !!


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## bev (Jul 3, 2009)

Thanks Adrienne,

So just to check - even the insulin comes from medtronic? How do they keep it cool for transport? Am i confused? So we just get the strips from the gp then?Bev


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## sofaraway (Jul 3, 2009)

bev said:


> Thanks Adrienne,
> 
> So just to check - even the insulin comes from medtronic? How do they keep it cool for transport? Am i confused? So we just get the strips from the gp then?Bev



Insulin will still come from the GP,


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## Adrienne (Jul 3, 2009)

Only anything to do with the pump itself, not the medication at all in this instance insulin.  That is still on script from doctors.


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## Sugarbum (Jul 4, 2009)

Hi Patricia and everyone,

How are you and E? Sorry I havent been about to chat last couple of days, since getting the pump on wednesday I have worked non-stop, but I have just sat down and read a few pages of the thread to catch up, I love it! I think you doubt yourself a bit though- just to clarify, I love this thread!

Im so pleased to hear the E got off to France in the end ok. It must have been awful waiting for that evening text at 11.30pm! Woman, you have definately shown the restrain! And it isnt easy in this heat to work out insulin so precisely either is it? Im am struggling a little myself. Its so good to hear how you manage this as a family though. Its nice that E's dad is also confident to advise too. I simply cant get my head around these small increments at the moment, its a little too early for me, so I am abit wowed that you all know your stuff so well!

Patricia, may I ask....does E use the sensors? or are you using the contour BG machine and bluetoothing? I have been given the contour, I shall be opening the packet this afternoon and swatting up.

Hope you and the family are having a lovely sunny relaxing weekend x


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## Patricia (Jul 4, 2009)

Hi Sugarbum et al

Great to hear from you. All's well this end. E returned on the floor with exhaustion, but at 8mmols! Stayed on temp basal last night, a hypo last thing (mash through too quickly, we now wonder?), woke on 11. Now switched to our weekend pattern with the addition of some lowered basal rates for the heat, and levels are good, 5-7mmols.

The french trip from his perspective is another story, really, will tell soon. He didn't send us all the info -- not to do with his management, but to do with how the teachers did or didn't look after him. We were a bit let down. He did so well though, and throughout, his numbers were really pretty decent, with the busiest day unsurprisingly being the most variable, swinging from 12 to hypos (3 of them, eek). But he managed. When I heard the lack of support he'd had to endure, well... No one reminded him about anything. He did it all himself. One teacher (not the one we'd primed!!!) checked in with him at meals, and to her credit, also reminded him about testing when swimming, actually bringing the kit to him, which was very nice. BUT the teacher he'd set out to depend on said *not one word* to him about diabetes, nor did he enquire about how he was generally. I was FUMING. Still am. And he is also cross.

ANYWAY. All that aside, I think he is now seeing that he did it, that all is well, and that he is quite capable of working his way through most situations. He said that he kept the messiest suitcase by far, but that his bedside was most organised: testing kit, glucose, juice, mobile phone -- all right there. Good boy! We can forgive him the complete chaos he's arrived home with -- lancets everywhere, rubbish just all over his stuff...oh well. Teenagers! 

And frankly, he is entitled to a bit of disorgansition, when in so much he has to be organised...

To answer your question Sugarbum, we have not yet progressed to senors or using Contour meter. He likes Optium exceed at the moment, and doesn't find putting the bgl in any great hardship, just one more step, he says. 

We will be getting a sensor, though; it has come as part of the PCT package, though we have yet to physically get it. One thing at a time. He wants it, though we are a *little* fearful of him feeling just 'medicalised' out...It'll ultimately be his decision though. He's a gadgety person, and it may help him feel safe in all kinds of situations. He's confident, but likes control (hmm, wonder where he gets that from?).

The small increments will become clear once you start on the insulin, I'm sure. It's just a different system, and each person is sensitive in different ways. E responds to 0.05 of a unit -- others work on units at a time.

Also, once you start with a baseline, it becomes much easier to imagine how to work it. I really thought I was simply *not* going to get it, from the outside. But actually, it makes a logical sense. It's a closed system, not endlessly variable and strange -- much like MDI in that way, but just hugely more flexible and immediately able to be adjusted.

E's dad not only has confidence, he has more than I do. From the beginning we have been in this together, and his understanding of the systems has always outstripped mine. We have different strengths when it comes to dealing with diabetes -- but the truth is, E has utter trust in his father, who brings all of his formidable intelligence and evenness of spirit to the management of it all. I'm much more reactionary, and liable to be overwhelmed. I'm also more instinctive, which has at times also been very useful in the management of E's diabetes -- not just with the pump. 

We are lucky. We complement each other. And his sister, despite being younger, also understands much. We try our best to make loads of room and special time for her too. When the boys were gone, she and I shopped and got manicures for the first time ever (like your pedicure Mand! How are you?)! Then lay in the sun. Had a pizza. 'No carb counting', she said. A nine year old. Times like that are important....

Anyway. I digress. Let me know how you find the Contour, whether it's worth it?


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## Sugarbum (Jul 4, 2009)

Hi Patricia,

The Contour came free witht he pump so please dont pay for it if you do go down that route! I would imagine your DSN will order you one if she has none in stock.

As I put on my thread, the Contour sounds like a name for sanitary wear. Puts me right off. And its got tons of info in I wasnt up to reading it let alone getting on with it- Ive had instructional overload! So will let you know when I finally do crack it...its back in the box unfortunately today just wasnt the day! I may well follow in E's example, I dont think once I get to grips with the wizzard I will mind keying in my sugar levels, we will see.

I have been bolusing the saline so much playing about, chances are I might not have enough till sunday :# uh-oh


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## Patricia (Jul 5, 2009)

Hi Sugarbum

Yes, we got a Contour for free, but like I say, not using it at the moment. What is also coming at some point is the sensor -- not got there yet either!

Yes, we ran out of saline before we got there, so it beeped in a cute way all the way to the hospital! (He now keeps it on vibrate, by the way.)

btw, we really *only* use the bolus wizard, not the 'easy bolus'. Advised against the latter for his age group because it involves eying food, then 'counting in' number of beeps, one for each unit, then counting them back as delivered. Apparently good for 'busy folk' who know carb counting and their own bodies/levels well. For us still has too much room for error though.

Levels all going well this end. Incredibly stable night: 5.3 so had a frube (5g carb), at 6.3 at 2am, then woke to 5.7 (45 mins after waking, so was prob a bit higher when woke). AND he had a lie-in to 9am. The weekend pattern now seems like it too is getting sorted. Yay!


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## Mand (Jul 5, 2009)

Hi Patricia

Firstly, I want to apologise for not sending you a pm to let you know that i going on holiday. I did do a thread to tell everyone but having just checked it i noticed there is no post from you on it and suspect that you did not see it and now worried in case you thought i had just up and left or something. Sorry Patricia. I should have thought more.

Anyway, i have caught up with your thread and gosh! you certainly had some experiences! So glad that E's trip went well. I can imagine the anxiety you have been through but it sounds like all went well but disappointing re lack of teacher support! Makes me feel very angry! Will you speak to the school about this issue?

What a night you had when the pump fell down the radiator! Gosh! My son's bed is next to the radiator and i can just imagine a similar thing happening to him! At least i am now forewarned after reading your experience!

Sorry to read that things got a bit unstable for a while, despite the fact that you were as conciencous as ever but glad to hear things settling down again for you. 

You mentioned something in your posts about boring us. Can i just tell you that i find your posts so interesting. I have learnt so much from you already. I cannot express enough how unboring they are!  I thank you so much for taking the time to write them. You are one special lady! 

My son starts pumping Tuesday at 9.30am. It will be the real thing as he has already done a saline trial. Gulp!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Our holiday went very well! (See my thread 'returned from holiday').

Glad you and your daughter had a girly pamper time! Fab, isn't it! My pedicure survived the holiday and my feet still look good. Good for you! You certainly deserved it!

Look forward to your next post!


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## Mand (Jul 5, 2009)

Oh I forgot to say that my copy of 'pumping insulin' arrived the day before our hol so i plan to start reading it tonight.


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## Patricia (Jul 6, 2009)

Hello Mand et al

No worries! I obviously missed the hol thread, which is a shame. Sometimes I go for a couple of days without checking properly here, just do my bit, and that's when I miss things (eg the whole ruckus over on low/no carbers! Ack.). So sorry! But it's not your fault! I'm glad you had a great time -- will check it all out.

Am so excited for you for Tuesday -- it will be GOOD. Nervewracking, yes, but a good thing. I really do think you will find it kind of amazing...Will you make sure to let everyone know? Will you run another thread? Between us all, a whole picture can be made! Can't wait...

Three nights of sleep later and E is nearly human. His distress with his teacher faded somewhat, but then re-emerged last night with some conviction: he wants the teacher to know how let down he feels. From our point of view, yes, E managed, but it affected his enjoyment a bit (because he was cross), left him almost completely unsupported (so he may have felt more alone than necessary) -- and ultimately, the chap failed somewhat in duty of care (which is a general concern for the school). He did not do the only two things we requested of him: check E's bedtime level, and keep an eye on him while swimming. In fact, the teacher did not mention A WORD or check in with e ONCE in the whole trip!

Day to day, the school has handled things well and with a good balance of involvement and hands-off... We will write a diplomatic letter of concern about both points of view: E felt let down; and we now feel a little concerned that this event may be symptomatic of a too-widespread lack of seriousness around t1 diabetes at the school. We know that there are 3 boys there now with t1. Chances are in a secondary school that everything will always be well, esp with things as they are now. However, our main concern is that teachers need to be aware of what might *not* go well, and what that means. That's all. E reports that the majority of his teachers seem to understand and approach things well, checking in quietly with him, catching his eye after he tests, etc... But I think we need to raise the flag a little about this being standard practice.

AND of course the next school trip will find us being more assertive. Ahem.

Meanwhile levels doing a little weirdness late yesterday -- we suspect all down to the basal rate being lowered early last week for heat and preparing for France. So despite a tiny correction last night, he still woke on 11mmols. We will keep him on these rates and ratios today and see how many corrections etc he has to do in order to figure out where to go next. We knew last week we'd have to put it all up again -- but it was worth it for the safety in France!

Enjoy the book! And let us know about tomorrow! It will all become clearer and clearer, faster than you realise is possible...


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## bev (Jul 6, 2009)

Patricia,
How awful that the school let E down in such important circumstances.
I dont understand how a teacher would let down a student quite so drastically! He obviously knew E was new to pumping and all that that entails, even if he just asked E if he was ok a few times - that would have been something!
No wonder E felt so let down by the teacher, it borders on neglect. It is a good job E is so sensible and calm about his diabetes and this i am sure is what helped him get through the holiday. But it is not good enough, and i would definately raise awareness with the school. What would worry me is that if the teacher hadnt bothered to ask E what his night time levels were - how would he have known whether there was a problem or not? So even if he had asked him and his level was low - would he have realised that E needed a snack or even hypo treatment? I hope you get to the bottom of what happened and make sure the school learn a lesson.Bev


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## Patricia (Jul 6, 2009)

I agree completely Bev; it sort of mystifies, doesn't it? We will certainly register our thoughts etc..but it's always difficult: very important that diabetes doesn't become the sole identifying characteristic of E's time in school, or that *too* much turns around that. So we will go diplomatically... You do wonder though just how a teacher could be so irresponsible; he's a young guy, but still...E thought he could trust him, specifically said he'd be best of the group going, etc...Clearly the guy either can't take or isn't used to taking responsibility of this sort -- in which case we should have known that. We met with him!

The teacher *didn't* ask nighttime levels! E sent them to us. So no one around him knew what level he was on -- although we had specifically requested in the meeting that if his levels were too low, E be woken in the night to test...Fortunately this didn't happen, but argh!


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## Mand (Jul 6, 2009)

Hi Patricia

Do let us know the outcome with the school after you have contacted them about what happened. I really do think they let you and E down. My son going on an overnight trip to France next week, only a week after having pump fitted. His nurse thinks it will be ok to do. Gulp!!!!!!!!!!!!!!!!!!! But he only going midnight one day to midnight the next day.

Thanks for your well wishes for tomorrow! My stomach has butterflies at moment. We to give half his levemir tonight and then will be connected tomorrow at 9.30am.

Yes, i will start a thread like you and sugarbum have done then we can all compare. 

Thanks to your thread and the support from the people on this forum, i feel pretty well geared up for tomorrow. 

ps how often does E change his cannula?


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## Patricia (Jul 6, 2009)

It will all be good, Mand, all be good. Hang in there. You will be amazed.

We change sets every 3 1/2 days. Supposed to be every three, but we *knew* our lives would find that difficult -- the days of the week wouldn't repeat until 3 weeks in or something -- too much for us! We are too fraught and busy generally. We were cleared to extend time a little because E tests so regularly, and any pump failure would be picked up quickly....


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## Patricia (Jul 6, 2009)

Yikes! Overnight one night after a week...probably be just fine. Nerve-wracking though! I feel for you...


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## Mand (Jul 6, 2009)

3.5 days is great! I hope my son can do something similar. He managed 3 days when on trial so hopefully will be ok. I say this as i had orginally thought it could only be 2 days so another day or more is an added bonus.

No, the trip not good timing! I forsee many sleepless nights ahead for me! Think i need to book another pedicure or similar as a pick me up! Hehe! 

Hope all ok with you, E and your family. x


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## Adrienne (Jul 6, 2009)

Hi

They recommended change of set is two days.   Most people I know manage 3 days.   If we go for longer than 3 then my daughter (J - Patricia has an E and so I have a J, makes things so much easier than typing my daughter) gets a sore spot at the site entrance.

A few people can only last the 2 days though and a few others I've known to go 4 or 5.   It is entirely up to the individual.    I can do set change in less than 5 minutes from start to finish so we do it before school, after school, before bed etc etc.   You will get so good at it, that the actual sticking it in and get the needle out will be done all in 2 seconds.


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## Patricia (Jul 7, 2009)

Hiya

Mand, all best for today! Thinking of you.

Interesting night last night. One way of putting it...

E 'rode high' all day yesterday -- typical of pump, very regularly so! 10,11 all day. So we thought, hm, need to up the basal. Had been lowered for France. Decided to wait through night for whole 24 hours of figures from which to adjust.

He had dropped to 7 by dinner -- but dinner was late and he hadn't had snack since lunch. But at 9.30 was 11mmols. Hm. 10.30 was 16mmols! All hands on deck. Gave full correction of 2 something units, set alarm for 12.30am. At 12.30 was only down to 15mmols. Poo poo! Did pump self test, all fine. Immediate thoughts though were that it was time for set change and correction injection, etc... Should have been much lower....E full of resistance of course, wanting to sleep.

So we phoned DSN. Yes, at 1am we phoned DSN. She was, to her credit, completely laid back. Took on the figures, said NOT to change set/inject yet because if pump were failing numbers would be MUCH higher. Suggested to wizard bgl and if correction under 2units, override to give two units. Also to set temp basal to 125% all night. And to test at 3am if we could.

Which of course we could. Suggested correction was 2.4 units. We gave whole thing. Set temp basal to 125%. 

Took ages to go back to sleep.

At 3am, both got up (again!) to check: down to 11mmols. She was right! This morning, temp basal had brought him down to 7.5mmols.

Phoned lovely DSN again at 7am this morning to see what to do for the day: her suggestion was to leave on 125% basal, and turn off if starts to 'ride low'. Then we can see whether E is brewing something and therefore we just need to ride this out -- or whether, like happened in April, this is a sudden growth spurt and it's an all-change situation.

Whatever the case, we LOVE the pump. The ability to adjust and react so quickly to high numbers is amazing and reassuring. Yes, it's all a steep learning curve but now we know things:

1) numbers will climb fast and high if pump fails
2) pump doesn't seem to 'part fail' -- it's more of an all or nothing situation
3) setting a temp basal is every bit as levelling as the 'normal' level basal. It's a slow, gentle thing that is unlikely to 'plunge' him -- which is what used to happen with any kind of attempt to correct by injection. 
4) any downward movement in bgl when riding high shows that using the pump is worth pursuing.

So...Never mind that we are like wet rags once again today. He's well, though rather shattered. We'll see at the end of the day how things have gone, and decide from there whether to adjust the pattern permanently, or whether he's fighting a bug...

Adrienne -- I did think of your post a week or so ago, about J going high and you wrestling her down through the night. This helped me, as part of why we held back a little from doing an immediate set change was my memory that you hadn't, so maybe it's not necessary...Thanks!

For now!


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## Patricia (Jul 7, 2009)

I'm just going to take a moment to sing the praises of our DSN. We think she is better than sliced bread, and deserves some kind of medal. We have an appointment at clinic this week: what do you think? A mug of some sort? Could find a good one...Also want to get something for the dietician, who has been at the end of an email for us, esp getting E through France, constantly. Feel very lucky, and like these folks need acknowledging.


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## Northerner (Jul 7, 2009)

My goodness, what a night! Terrific that you managed to get things under control - and indeed that you were able to thanks to the pump's flexibility! As you say, id I adjusted my lantus it would take about 2-3 DAYS before I could be sure of the difference it had made!

And big, big respect to your DSN for being such a wonderful, and very professional, caring person!


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## Patricia (Jul 7, 2009)

Thanks Northerner! I'm telling you, you would *love* the pump.

And yes, being able to send him off to school at a good starting point is fab. And not dealing with insulin resistance on top of it all, which we do know happens with him after just a few hours of being 14+...Stabilises everything much faster.


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## Mand (Jul 7, 2009)

Hi Patricia

I read your last post with interest. After our training this morning and our experience so far, I can make much better sense of everything you write and it is so educational to me so thank you,as always.

I am totally in love with the pump already! Everything you said was true! It really is an amazing device! 

I will regularly update my thread and avidly read yours.

Love Mand x


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## Patricia (Jul 8, 2009)

Yay Mand, glad to hear all positive so far. I read with interest too your experiences -- we are so lucky to have come to the pump so early that we had fewer routines to adjust...so your experiences are in some ways so different...

I sound positively evangelical. Must watch that.

Numbers yesterday for E were much lower, generally good, though rising a little after lunch. His temp basal ran out at 3pm, and his evening was quite good. Overall, a good day. We are taking a cautious approach and raising all the temp basals save the mid-morning one (where he has traditionally hypo-ed), and the last thing at night one (because his bedtime measurement was 6.8, perfect). We have though changed his ratio back to 1:12 from 1:14 for his morning snack (around the time he hypos, so lets hope we haven't got ourselves right back to it!). We're hoping this will set him up for lunch a bit better -- yesterday he went into lunch at 10mmols, unusual.

Woke this morning high -- 11mmols -- after going to bed on such a good number! Oh well. We were prepared to adjust the night basal after France. Will check everything with dietician today, and plough on. I feel sure we are almost there -- and anyway, can react with such speed and effectiveness that everything feels better.

Good news for E is a little respite from hypos since Saturday. This is unusual for him -- he usually swings around a bit, and wants low numbers so tolerates hypos. I'm glad to give him a break, myself...

Another thing: did set change last night, and it was a painful one. After 20 mins, still painful. After dinner, still unusually noticeable, so he took the decision to change it again. His relief was immediate. He will know not to use that place again -- probably just struck right on a nerve. But the lesson is -- trust the wearer! He knew it had to change, even though I was saying 'are you sure' and 'try one day' etc!


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## Mand (Jul 8, 2009)

Oh bless him! He just knew it was not right, didn't he? so glad he got comy in the end. As you say, trust the wearer. I will remember that one!

How are his levels today? Have your adjustments helped?

Glad he having a break from hypos.

Our boys, and all diabetic children, are truly little stars. They have so much to contend with compared to other kids but lets hope it makes them better people. I say that as i noticed that since his diagnosis my son is more compassionate to people with problems whether they are physical or mental. I guess our kids have had to grow up and mature a bit quicker due to their diabetes but hopefully they will benefit from this. 

Look forward to your next update! 

Mand


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## Patricia (Jul 9, 2009)

Hello all

Levels were better generally yesterday, with a peculiar blip after lunch (similar to day before) -- everything except this two hour after eating set of readings in target. Yay! We think we will switch back to 1:10 ratio for his lunch. Good news though is that the mid-morning hypos seem cracked -- not one in several days now, which must be some kind of record!

Woke up high again today, so that's the proof then that his nighttime needs adjusting, which we will do tonight. Two nights ago he'd had quite a bit of cream in a smoked mackerel/potato bake (yum!), and we had wanted to make sure that yesterday morning's high wasn't a late kick of that. But clearly not! 

He was so high (eg resistant) this morning (16), that a straight out correction plus breakfast didn't touch it 2 hours in -- he was still 16. HOWEVER: trust the pump. It wouldn't let us correct again of course, insulin still active, and 3 hours after dose he was down to 11.2! Have done a small correction again with a snack, and all should be well here on out...

Clinic today with dad. We'll see about when to do a fasting basal etc, which we expect to do soon. I think with the nighttime adjusted and with the lunch ratio shifted, we will be there. 

It's worth saying though that E seems to be growing right before our eyes, so it's no wonder we are running to keep up! His shoes size seems to change daily...how irritating: bought a new pair of school shoes 4 weeks ago, just as big as we could get away with, and 1.5 sizes larger than he started with in Sept -- on Monday he announced that they felt weirdly small! Checked and there's room -- but only just. Obviously won't last him until the new year...!

AND just had to put a link into his new watch -- after only 2 months! Even the waistband on his underwear is suddenly too tight! Had to replace the whole lot this week...

All in all, though, I'm just so thankful that he *is* growing. I was terrified at diagnosis that on top of everything else, his maturing would be slowed. This is so common. I'm convinced that with the pump his health is that much more stable, the insulin is going in, he's eating to appetite -- and it's all working. He's gained 2-3kilos in the last 3 months, a little meat now on his bones, which he sorely, sorely needed. 

Again, at the risk of sounding evangelical: bless the pump. One month in and I'm *certain*, we're certain, it's improving his overall health and outlook.


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## Adrienne (Jul 9, 2009)

You are doing absolutely fantastically and talking like a true pump pro 

You are going about it all brilliantly tweaking a bit at a time and its showing the results.  

Yep 'trust the pump'.   If the pump is wrong then it will tell you in the levels and you tweak, if its right then it tells you that as well with the great results.

Great stuff.


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## Patricia (Jul 9, 2009)

Adrienne said:


> You are doing absolutely fantastically and talking like a true pump pro



Music to my ears, Adrienne! Thank you!


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## Mand (Jul 9, 2009)

Excellent news, Patricia! So pleased for you all. 

Three cheers for the pump!!!!!!


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## Patricia (Jul 10, 2009)

Mornin' all

After the 3am club last night, waking to Northerner's pump mums poem was a real boon! Great....

Numbers okay yesterday, though E is little cross cos they were high-ish -- but he had a clinic day (eg less active) and stayed on his normal school day pattern, so they *would* be higher...! Nevertheless, an okay day. And with the great clinic results (see other thread, yay!), all was well.

Last night though we had another high number blip: 14 at 9.45pm (two hours after last bolus) for which we corrected, 20 at 11pm -- for which we corrected massively (all using wizard)! By 12am he was coming down (phew, no set change necessary), to 15, and at 3am he was 10mmol. By this morning, he was 5.9, having upped his bedtime basal anyway as leftover too low from France...

A little bit head-scratching, this. A similar-ish thing happened on Tuesday night. A very late spike? And yet: nothing weird eaten. New potatoes... Our only thought is strawberries -- not sure if we had them Tuesday night as well...but we've been wondering last few times if these are weird for him, sending him high. We have strawbs, cream, and teaspoon of sugar, dose for about 12g carb...

Oh I don't know! The other thing for us to keep in mind is that this has happened both times on the same set: we change this evening. But why it would happen twice at night? If it's the set then it may happen other times? Who knows. Oh gosh, well there *was* that weird after lunch blip on Wednesday...



Could well be once levels are set generally, all will become clear. Or not. 

Expect today to be a little more even though, with a good start. A fair test of our new tweaks at the least...(Sigh. Famous last words!)


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## sofaraway (Jul 10, 2009)

I am enjoying reading this thread, but don't have much to contribute as I don't pump.
I have found similar with strawberries, they raise my blood sugar more than the carb count says they should. I find I can tolerate most fruit without a problem but tend to get a spike with strawberries. 

A general question, when on a pump is it constantly a case of tweeking or is there a point when things are well enough set that things don't change for several weeks.


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## Patricia (Jul 10, 2009)

Hello Nikki

Thanks! The strawberry thought is a *really* good one -- this would go some way to explaining something which has got us flummoxed. The carb count for them is low, but it would be interesting if they just seem to do something other than that. Helpful!

Re tweaking -- I think in theory things stay sane and settled after a while -- in so far as it ever does with D, I guess! I suspect though that with children it is more or less a constant fiddle, because they are constantly changing and growing and having different needs. They also don't tend to have as predictable lives generally maybe? 

I would hope that E's basal rates will settle very soon. We were virtually there and then the hot weather came, along with France, and it was really all change. Now though we are nearly there again, I'm sure.

I think the idea is that ultimately the more you fiddle, giving little corrections and top-ups, the better, with the pump. This is what the consultant said yesterday. See a high number (over 10, I think Adrienne does), and correct. This keeps pulling things in, and will go some way to avoid the basal tweaking -- tiny boluses are very manageable. (No point in doing that constantly though, so the basal needs to be as near a dammit, as they say...).

Long way to answer your question!

Anyway, thanks for the heads up with strawbs. I think this might be the case....


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## Adrienne (Jul 10, 2009)

sofaraway said:


> I am enjoying reading this thread, but don't have much to contribute as I don't pump.
> I have found similar with strawberries, they raise my blood sugar more than the carb count says they should. I find I can tolerate most fruit without a problem but tend to get a spike with strawberries.
> 
> A general question, when on a pump is it constantly a case of tweeking or is there a point when things are well enough set that things don't change for several weeks.



Good question Nikki.

These boys are so very new and they will be tweaking for a while but E for not much longer they are nearly there.

Yes there does come a time when the tweaking gets less but it never does end.   I can only speak where children are concerned of course (that includes teens).   They are growing, everything about them is growing and they have growth hormones over night and then boom the teen hormones kick in but they can kick in from about 9 or 10 upwards and gets worse.   It isn't until a child is a diabetic that you can actually see what is happening in their bodies due to the erratic levels.    I haven't changed anything on J's pump for a few weeks now but yesterday changed the breakfast and lunchtime ratios, she needs more insulin.   I probably won't touch it again for a while unless I need to tweak those ratios again. 

As we have sensors we can download all the data onto my computer and I can see the daily overlay and graphs etc so weekly or two weekly I take alook and see if there are any trends I haven't spotted and I tweak if necessary.

It sounds full on how the others are describing it and believe me that is going through my head on a daily basis but it becomes part of your life, just like diabetes itself.    So yes it gets easier but because you get used to it.


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## Adrienne (Jul 10, 2009)

I don't even bolus for strawberries, unless she has a bucket full, they don't do anything to J at all.  Funny isn't it.


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## Adrienne (Jul 10, 2009)

Patricia said:


> Hello Nikki
> 
> Thanks! The strawberry thought is a *really* good one -- this would go some way to explaining something which has got us flummoxed. The carb count for them is low, but it would be interesting if they just seem to do something other than that. Helpful!
> 
> ...



Hi

Yes you are right with all that.

I do correct over 10.    New pumpers start at correcting at over 14 then you bring that down gradually so you are tweaking the basals as you go as well.   I have some friends who have been pumping longer (children) and they correct over 7 or 8 !!   Oh to be that tight a control, how wonderful.   With J I don't think we will get that good, we have a problem with 10.0!


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## Mand (Jul 10, 2009)

Will bear the strawberry dilema in mind as we often have strawberries!

It must be so frustrating for you when things become a bit unsettled with all the effort you are putting in but i guess the problem is that 'life' doesn't stay the same each day so the goal posts are always moving! eg weather, trips etc.

As i am a step behind you, i do not have enough knowledge to suggest a solution to your recent 'blip' but i hope it settles down soon.

You are doing a fantastic job so please continue to be proud of your achievments so far! 

Will keeping reading this thread avidly!


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## Patricia (Jul 10, 2009)

Cheers all --

Imagine correcting over 6 or 7! Wow! E would be in heaven with that, though; he really craves good numbers. Partly why the pump suits him I guess too, all the buttons...We have, off our own bat, started to correct anything above 10. Watch this space!


Mand, interesting thought about levels of frustration...I think that, although yes it is frustrating, it *always* feels within reach. So I'm much less *panicky* about everything, somehow. Last night was a pain in the butt, and E actually felt quite poorly and was very cross we made him do a ketones test etc when all he wanted to do was sleep -- but we *knew* that within an hour we would be able to decide whether it was a set change situation, or whether he was coming down and things were going to be okay with this one. This is a very different scenario than with MDI, where the time-frames are much longer, and the rate of absorption etc is so variable and unpredictable, that it just so often felt haywire. In these ways, the pump is utterly reliable. We are now coming to *believe* that we can get him down, whatever happens.

He had his first hypo yesterday evening in 5 days! This really is a record for him. A mild 3.8 one, box of juice and he was off...

If we were pinging all over the place like we used to -- hypo/hyper/hypo/hyper -- then any disturbance in the settled rates would be equally as stressful...but because we're not doing that any more, the blips are annoying (and mean no sleep!), but more like a puzzle than like the end of the world. We are coming to trust that with some work and engrained habits on his part, he can achieve and maintain good control.

On the way back from clinic yesterday, his father reports E's extreme relief at getting something like good control, and one he feels he can maintain. I think 7% is a very good rate for an adolescent, and he knows this. The aim is below 7.5% I believe...Anyway, he has obviously been quite haunted and upset inside, deep down wondering if he will *ever* get good control. And he is so clearly relieved, like if it's okay this time, it will be okay again -- maybe not always, but it is *possible*. 

Again, the impact on his psychology and quality of life is really quite significant. We got out his old log books from November, and looked at how we were trying to dose him then: the same doses for each meal, chopping and changing, one up, one down...And he got quite sad. He said that he had *believed* our team, that he had taken it all in, tried his best, really struggled -- for nothing really, for methods that didn't work for him. 

The first three months or so after diagnosis were a real pig's ear for us. We were working with the best information we could get, but we weren't getting the best information available. E has a buried disappointment that time was wasted then, time when he could have gained good control -- and he's resentful of it.

ANYWAY. Look to the future. Things are better now. We did literally days and days of research and this first step has proven to be the right one for him. 

Phew!


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## Sugarbum (Jul 10, 2009)

Wow- it must be weird taking that reflective step, but I would suspect very useful. Its funny how when you look back (I have kept all my books as well) and I wonder how I ever functioned on 4/4/6 of novorapid! I did that for a very long time too, I know I must have done some damage over that time, but I honestly didnt know any better. Knowing your stuff now though Patricia really shows to have paid its worth ten-fold.

I am very empathetic to E and craving those good numbers! Perhaps for the first time I sense they are attainable! All the functions seem to make it achieveable for once. Its good he is seeing change, progress and identifying his own goals. How fantastic.

Hope you and the family have a lovely weekend!
Love Louisa x


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## Patricia (Jul 10, 2009)

Thanks Louisa, great to hear from you (and on the other thread too -- sorry Mand!). It's so hard to justify -- well impossible actually -- the varying levels of advice and care. I find it heartbreaking sometimes, and outraging...When so much is at stake.

Good luck with everything this weekend -- did you dual wave, by the way? Glad your numbers are feeling within reach, and more, that you are able to step away and into different things with confidence. Yay!

Sigh. Once again, feeling lucky....

xxoo


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## bev (Jul 10, 2009)

Hi Patricia,
I am finding all this fascinating! Also learning so much and hopefully it will be kept as a sticky so i can use it as a reference point?

On the subject of correcting - we always correct A on anything over 7. So do you mean its different on the pump? Dont you have to correct until its over 10 for a reason? Sorry i am confused!Bev


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## Mand (Jul 10, 2009)

Patricia, so glad that things getting better for you. Good to look back and see the improvements. Please keep posting because i read your posts with great interest.
Have good weekend. x

Bev, we were told that to begin with we were only to aim to correct my son to 10 just to be on the safe side until we know how sensitive he is to insulin then, when we know, we to correct him to lower. I think it is all about playing it safe for the first few weeks. What is hard when starting on the pump is that you have to let all the old rules go and start on the 'standard' new rules then adjust things so they suit you individually. Hope i am correct in saying all that!


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## Patricia (Jul 12, 2009)

Hi all

Just a quick update: things going well generally, with numbers floating around 7/8 mmols most times. Yesterday a high (11) after a hypo correction (again, a mild one, have adjusted that basal rate slightly!), and during a dual wave...

Dual wave: we found a better system (we think!) for dealing with rice. We *used to* weigh risotto when made, but there's a heck of a lot of absorbed stock etc in that, so felt we were usually erring one way or the other....So last night, something different: weighed dry rice, estimated how much of overall amount he would have (about a third!). This equated to around 105g carb. Cooked rice rates would have produced a considerably higher carb. Also, it makes instinctive sense that a large rice meal would not be that far off a large pasta meal, eg 100g. It's good to know for estimating purposes! (Oh, and forgot: he also had a magnum ice cream as treat! That seems to have dosed no problem with a straight bolus -- no blip, anyway, in the middle of the dual wave!)

SO -- we dual waved over longer time (having hypo-ed at 2 hours into a 3 hour one last time): 4 hours, 30% right away/70% over rest of time. At 2 hours in, he was 12. At 3 hours in, 12. At 4 hours in, 9. At 5.5 hours, 8mmols. The long process of being at 12 seems a bit high to us, so we think we might try 4 hours again next time, BUT re-jig proportions, so that we are doling out 40% of dose at first (in an attempt to lower him quicker right away), then the remaining 60% over the 4 hours.... We hope this will keep him lower over that time frame...

But we are pleased with the four hour stint -- ending up at 8mmols an hour after dose finishes is pretty good, when he started at 7.7 or something....

Nighttime too seems stable now, though he *is* raising one mmol at the moment. We will leave it a night or two to see if it's a pattern, then maybe raise his night basal again to .75u/hour (which, ironically, was his starting point way back when!). We want to get him closer to 7 at bedtime more frequently, then we will really know what is happening with his rate. It's a good feeling though to be back in the land of night stability: he goes to bed on 10, wakes up at 11. Goes to bed on 8, wakes up at 9. Etc. We just need to get him going to bed a little lower!

We never corrected without food much on MDI unless over 12 really, because the effects were always too unpredictable, and it was so hard to know how much insulin was still about, and for how much longer, etc...

On pump corrections much more predictable, it seems, so yes we are beginning now to always correct (without food) whenever a number over 10 presents. Of course with the wizard, there is *always* an in-built correction, aiming for whatever your target is (in our case, 7.5) with food, in the same way that you would correct with food (aiming for 7 or whatever) on MDI. For us the difference in correcting is not what you do with food (you always correct, on MDI or with wizard, though wizard is more accurate), but how frequently we feel we can correct without food, eg anytime E encounters a higher number in the normal day of testing (eg two hours after meal or whatever)...

Hope that makes some sense...!

xxoo


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## Mand (Jul 12, 2009)

Hi Patricia

Thanks for the update! Boy, you are doing well! Many congratulations to you all! As you say, everything is so much more controlable on the pump. We definately finding that.

You are at a nice stage where you have got the basics steady so now you are able to do little tweaks and also to experiment with different foods and dual or square waving. A good place to be at after all your initial hard work. Good for you! 

Please keep your posts coming. I read them with great interest. I will now go and update my thread.  xx


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## Sugarbum (Jul 12, 2009)

Oh that makes a lot of sense and an interesting read!

Thank you for explaining how you do a dual wave with E on pasta and the percentages. This is going to take me some time, but also because I dont eat a great deal of Pasta and Rice so wont get to try it often to perfect it. I also dual waved this evening and didnt extend it for long enough. I guess I need to analyse its purpose somewhat and think why exactly I am using it and extent its durration for better effect. What I have learned from you though is that you use a larger percentage in the square wave than I have done as yet so I shall adapt a bit. This technique takes some perfecting!

How does E seem in himself? Is he settled (as it were) with pump life do you think? How are you doing. I am sure it must take some effort Patricia. I am a bit in awe at your above post. Its hard sometimes to crack those figures and make them make sense! I am so thankful of this forum now that I have access to this resource, I know now when newly diagnosed people say that it has really helped them. I didnt really ever take that on board, but this is almost a revisit of that having this kind of chat and contact on pumping. Many thanks!


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## Patricia (Jul 12, 2009)

Hey good to hear from you, guys... Just to say, that a square wave is different from a dual wave -- we haven't used a square wave yet, which doses insulin absolutely evenly over x amount of time, no percentage as a straight bolus right away. Square wave is good for porridge apparently (anything else, Adrienne?!) -- we were advised, anyway, to use it only for that right now.

Dual wave is the one with x percentage at first to cover the quick-ish carb, then y percentage over the next z hours, to cover the slow carb....

How is E in himself: well, pretty well really. Tonight he was hacked off with a set change -- a pain to do sometimes, particularly when, as tonight, drawing the insulin was a bit of a pickle, with too many bubbles and too much time....Diabetes is a pain, a nuisance and an irritation...Pumps don't remove this, of course.

HOWEVER. Once it's done, it's done. He has a bassoon exam on Tuesday, not really looking forward to it (who would?), second instrument, should do fine but used to doing great...so the added stress of a set change is a downer. Not a surprise. But again, boy would I take it away!

I wonder if, in some strange way, being 'objective' about the figures and maths etc is helpful? In truth, E doesn't make his own decisions at the moment about his pump tweaks...we do explain reasons for things, and check with him, but he always just punches it in, no problem and conflict.... I think that lining all this up AND dealing with the pump itself is a difficult one, lots of stuff to take on board. E is 'just' dealing with the  pump itself and his life, and remembering things...but not with the tweaks and numbers, particularly -- though he always checks out our charts and sees what's happening. What I mean is that he is not responsible for decisions: this is the break he gets. And maybe why the number stuff is a little easier for us -- it's literally *all* we are dealing with, physically and intellectually anyway. Emotionally -- well, that's a different story for all of us, I'm sure...

Bye for now!

xxoo


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## Mand (Jul 12, 2009)

We are exactly the same as you. Patricia. My son not making any decisions yet, so we have all the control at the moment so that for now he can just concentrate on getting used to wearing it, pushing buttons and changing the sets. One step at a time for them eh? xx  xx


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## Patricia (Jul 13, 2009)

Yes, it's a lot to take on board, really...And their lives are busy enough! Having children I think immediately means you become used to doing a few things at once, and you get used to your life expanding more and more to make room for what they need -- but our own kids of course have no experience of this, and have already expanded their lives to accommodate diabetes -- never mind a maths degree!

So...morning all!

I am entering this morning a bit frustrated -- though my husband, I'm sure rightly -- says we are getting there. Remember the higher than we wanted numbers with the risotto two nights ago? Well, we looked back, and ALL of the evenings after 9pm over the last four nights have risen, sometimes quite high (you may remember that, too)... We have been chipping away at the basal rate from 9pm onward, but it's clearly still not high enough: last night E was 17 (erk!) at 9.45pm. Took full correction from wizard, and at 11.45pm was still only 14 (erk! insulin resistance again). Another correction from wizard. By 3am (stagger lurch; I didn't do it!) he was down to 9.4 -- and this morning, woke up on 9.3 or something.

Two things from that: first, what a stable as a rock level for him at night! Good grief! Just like old times, before France. Second: we need to be more assertive with the evening basal. Sigh. I know why we are nervous -- in early days, we were having to scrape him off floor before bed, work to get his numbers up...This was on a basal rate which is *lower* than what he's on now that time of day! 

We have now resigned ourselves to him growing again -- only explanation. There has been no consistency of difficult foods (no strawberries last night!) or dual waving. So a change for the evening is where it's located at the moment. He just needs MORE INSULIN! Sometimes that's the answer...

But I wish the problems were in the day! Then he could correct and we wouldn't be up all hours tracing it all through...Sigh. It's like a surreal world in the middle of the night: we all get up for the loo, the cats perk up and think it's time to play (trip us up then sharpen their claws so loudly it's like maracas shaking), we listen to World Service or in extremis, make a cup of peppermint tea. Lordy!

We are also changing the lunch ratio a bit, as there have now been three occasions in last five of 10+mmols 2 hours after lunch. We are taking this *very* slowly, only adjusting by 1g, because traditionally late afternoon is a hypo time for him. This is also why we are not raising the basal here, hoping the ratio is the difficulty.

Feeling like I'm watching a good hba1c slip out of sight. Oh dear. So want this for him. But looked back over his records, and though most were mild, in the first two weeks of pumping he did have a lot of hypos. Not out of the ordinary for him as it was the same  on MDI too -- but compared to now, he had loads. I guess perhaps for this little time we're exploring the other end of the spectrum, chipping him down slowly rather than always trying to raise him up, which is where we were...

Sigh. I know that 6s and 7s are possible with the pump, consistently, even with adolescents. It feels out of reach at the moment -- and I want it! Blasted growth hormones!


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## Northerner (Jul 13, 2009)

Thanks for keeping us updated Patricia. I know it must be terribly frustrating, but do remind yourself of how much more difficult it would be to make adjustments on MDI. Hope you find the balance soon!


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## Patricia (Jul 13, 2009)

You're right, Northerner. Must...hang...on...to...this. Just feeling muzzy and a little cross, dreams having been full of mmols gone wrong!

Thanks for the back pat. Really appreciate it.


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## bev (Jul 13, 2009)

Hi Patricia,

Sorry to hear your feeling a bit down about the levels. But i suspect that this is just par for the course - it is like starting all over again isnt it? But this time - you are far more knowledgeable than at the diagnosis! At least now you know how to put things right and chip away at the growth hormones. 
Remember that A is still on MDI and trying to cope with growth homones on this regime is so difficult and takes literally days to achieve a better level! At least it can happen within a few hours on the pump - far more within reach than on MDI!

I am reading this with interest as i know that we will be going through much the same - but what i keep reminding myself of -  is that long term  -managing the pump is streets ahead for accuracy as opposed to MDI!

Like Adrienne has said - trust the pump and be guided by the numbers - your not a failure at all - the numbers pop up for a reason and its brilliant that they do - so lots of tweeking can be done! There is always a reason for a high/low numbers - and the best bit is that its within the pumps capability to bring the levels within range.
If it happens to be growth spurts - then in a way that makes life a little easier - because at least you know what your dealing with!Bev


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## Patricia (Jul 13, 2009)

Yes, absolutely. And as ever: thank goodness he *is* growing! I had the feeling we were running to keep up at the moment, and it looks like I'm right.

And you're right. The response time for the pump is just a whole different country than MDI!

Must remember this...!


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## Adrienne (Jul 13, 2009)

Patricia said:


> Yes, absolutely. And as ever: thank goodness he *is* growing! I had the feeling we were running to keep up at the moment, and it looks like I'm right.
> 
> And you're right. The response time for the pump is just a whole different country than MDI!
> 
> Must remember this...!



Hi

Sorry been away for the weekend, no computer.

Patricia Patricia Patricia stop the fretting.  YOU ARE DOING BRILLIANTLY (shouting so hopefully you can hear me wherever you are)  

You will hit brick walls and can't see where to go and you will need outside help from time to time.   I often email my DSN still and they are great (we have three fab ones).    

If you are having highs from about 9 pm onwards can I suggest you change the basal at about 7 pm.    Always work from about 2 hours before the high.  It is no good tweaking a basal at about 9 pm is the levels are rising about then.    

If you are getting a flat ish rate all night then you need to get the level right at the beginning of that flat rate.    I know that from midnight the basals for J (my daughter) are fine.   So I need to get that midnight number good.   So it sounds like you need to get that 9 pm number ok. 

For rice I too use 30/70 but over about 2 hours.

For MacDonalds I use 60/40 over 1 1/2 hours.

For pasta I have got to the stage where I do a normal bolus for the whole lot and then have to put on a 150 % temp basal for 1 1/2 hours.   That worked well last night.

Square waves - for those that don't know the difference between normal, dual wave and square wave, a short description (Patricia I know you know this).

Normal bolus - you give the whole lot on insulin all in one go.

Dual wave -  you can choose different percentages.  You chose a % to give in one go and then the rest of the % is given over a chosen period of time.  For example you can do 50/50 over 4 hours.   This means that 50% is given immediately like a normal bolus.   The other 50% is dribbled in over a 4 hour period.    (You can follow how much is being given on the pump screen).

You can do all sorts of combinations, ie what we do :

Rice :  30/70% over 2 hours
Chinese take away/restaurant :  50/50 % over 5 hours
If larger than normal amount of fat ie cheese on toast I would do 60/40 % over 1 1/2 hours.

Square wave - third and final way of delivering insulin.   You do not choose a percentage.  You do choose a time period.    So there is no normal bolus immediately.   The whole lot is given over a period of time.

This is not used that much (by me anyway).    I have used it a couple of times but with J she always needs a lump of insulin as a normal bolus and then the extended bit.

A dual wave is made up of a normal bolus and a square bolus.

Hope that helps.


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## Patricia (Jul 13, 2009)

I hear ya, I hear ya! And I'm listening. Much appreciated. Good to have you back Adrienne, and hope your weekend was a good one?

We have a 9pm basal rate, but I think you might be right; we need to start that earlier if he's rising from that point. Other half is in contact with DSN today... AND yes, thank goodness for flat rate at night now -- just need to enter the night on a good number, as you say.

Think I'm just a bit whacked today! Have some deadlines, a room to decorate...Though we did manage to have quite a restful (in the daytime!) weekend, so that's good.

Interested in the basal rate use for food too...we haven't got there yet, but I can see how it might really work...Hmm...

Thanks as ever, Adrienne.

xxoo


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## Mand (Jul 13, 2009)

I can so understand how you feel Patricia, but the others are right - you are doing a FANTASTIC job!!

I guess those growth hormones are not helping at all! Adriennes advice all looks really helpful though. (Adrienne - I will keep a copy of all that info for when we start using the bolus wizard. Hope that ok? Think it will be really useful stuff for me.) 

Let us know how things continue, Patricia. Hope all settles down again soon.

I do so know how you feel about being up in the night! It really is surreal. My alarm goes off, i nip to the loo, check his blood, make an adjustment if necessary or fetch him juice if that necessary (thankfully rarely having to do either in night) then i have a drink myself and try to return to sleep. But that easier said than done! Then just as you actually getting there, the alarm goes off again! AAAAAAAAAAAAAAHHHHHHHHHHHHHH!!!!!!!!!!!!!! xxxx


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## bev (Jul 13, 2009)

Can i just ask where the boys put their pumps? Alex is asking as he thinks he might drop it down the loo! I was thinking of making him a pouch to keep it close to his tummy? Thanks.Bev


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## Patricia (Jul 13, 2009)

E clips his to his pocket, usually, either inside or outside it. He's also worn it on his belt, clipped onto his t-shirt neck, on his waistband... Always clipped though, and usually locked.

I would have thought that inside a pouch might be inconvenient? They have to mess with it quite a bit, and the easier it is to get to, the better? Not sure.

Even just in underwear E clips it to the waistband, so that's the loo visit okay! Sometimes if he's sitting down, he just sits it next to him, because it can dig in if clipped to waistband...


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## Adrienne (Jul 13, 2009)

bev said:


> Can i just ask where the boys put their pumps? Alex is asking as he thinks he might drop it down the loo! I was thinking of making him a pouch to keep it close to his tummy? Thanks.Bev



Hi

As Patricia says, a clip on the waistband or lots of teens wear it in their pockets, some mum's then sew on a bit of velcro on the top of the pocket, 'just in case'.

If J gets up in the night for the loo, I've watched her put it under the arm !!!!  Bit different for a boy maybe, she sits down  but it's still under her arm.    You can get pump packs from loads of places which if your son is a sports player would be safer than the clip.


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## Mand (Jul 13, 2009)

My son started by putting his pump in the leather wallet provided and clipping it on to waistband but lately has been just putting it in his pocket. At the moment his is sleeping naked (but i did not tell you that!) so it just lies next to him. 

I do not know whether it will continue, but so far he has not made any fuss or comments about it at all. He gets undressed/dressed standing next to his bed so the pump can rest on the bed whilst he is changing. If he finding it difficult he takes the pump off for just a matter of seconds. 

Have not observed or asked re toilet duties! will need to discreetly investigate this!


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## Sugarbum (Jul 13, 2009)

Mand said:


> My son started by putting his pump in the leather wallet provided and clipping it on to waistband but lately has been just putting it in his pocket. At the moment his is sleeping naked (but i did not tell you that!) so it just lies next to him.




...._ssssSSSSHHHH!!!! We wont tell a soul.....!_

Patrica, good to read your updates but Adriennes right, you are doing such a great job, clearly! Just like MDI we can only try our very best and sometimes those readings will do what on earth they want. But you are doing so well. Look how much you have learned in such a short period of time....

Keep up the good work xxx


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## Patricia (Jul 13, 2009)

Thanks one and all! Mine's just in underwear, but always has it loose (the pump, not the underwear, ack!) in bed...

High after lunch today -- time for *another* ratio adjustment there, we think!

And after dinner still looking high...but less so, maybe? Will update tomorrow...

xxoo


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## Sugarbum (Jul 13, 2009)

Patricia said:


> Thanks one and all! Mine's just in underwear, but always has it loose (the pump, not the underwear, ack!) in bed...
> 
> High after lunch today -- time for *another* ratio adjustment there, we think!
> 
> ...



Just a thought but do you think numbers may be creeping slightly because the weather is less hot? Thinking back to this time last week and we were all suffering with our numbers in the heat....

Hope numbers turn out ok x


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## Mand (Jul 14, 2009)

I will have to withdraw my 'naked' comment as he ended up sleeping in pyjama shorts!  

But he still chose to have the pump loose in bed next to him. He seems very relaxed about this. 

He said that he woke up this morning and that the pump was on the floor! I said 'eek' but he said it was no problem, it had not hurt him and he had just picked it up and put it back in bed. 

Note to self "try not to 'eek' so easily".


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## Adrienne (Jul 14, 2009)

Mand said:


> I will have to withdraw my 'naked' comment as he ended up sleeping in pyjama shorts!
> 
> But he still chose to have the pump loose in bed next to him. He seems very relaxed about this.
> 
> ...



Jessica has always had her pump loose in bed.   Believe me when I say she could get a gold in the wriggling olympics and still the pump is ok just loose.


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## Patricia (Jul 15, 2009)

Hello all

Sorry for lapse...busy day yesterday and another one today:

So long and short of it:

Generally, good. Woke yesterday on great number -- 5.5 or something, having settled down at 5.4 plus some juice -- yay! Great numbers all yesterday until the afternoon, when pear shaped came in: set out for bassoon exam without meter! Worse, had had pasta for lunch and didn't dual wave! Oops. Everyone slightly panicky, but must remain calm for exam...Had some free carb to cover the inevitable drop from a normal bolus for pasta...

And no surprise ended up a bit high later, 11mmol, pasta kicking in late. Had a snack and corrected. Still 11mmol at dinner though, a treat of chicken pita and chips out...Corrected for this of course with wizard, estimated like mad and...2.6 at 10pm. Oh my. Had actually *underestimated* the pita (looked it up when we got home!), so we weren't sure at time why crashed....

Juice and an hour later he was 7.1mmols. Ah...anticipated good number upon waking.

Woke on 16mmol! Eek! Of course, we all went, slapping our heads -- CHIPS! 

I'm not sure he's had actual fried chips since diagnosis -- but clearly, they are mega-delayed. Which explains the hypo and the high this morning. Interesting to note though that we have none of this problem with oven chips, which he has all the time at home....

Sigh. Now we know. Ish. Now we have sent him off to school with a massive correction on board. Erk. Hope for best.

Live and learn. And things were going so *well*! (In truth, through the mistakes and mis-judgements, things were going well...so I must take heart!)

Must go. Deadlines. Horrible. Will check everyone else's threads in desperate breaks today! Hope all doing okay...


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## Mand (Jul 15, 2009)

Yes, do take heart, Patricia. I think maybe you need things to go a bit wobbly at times so you can learn further - eg eating fried chips for the first time etc. The more you can learn about different food and different situations the more you will be able to cope with things in the future.

An interesting post to read. Thanks. Hang on in there! You are still doing a terrific job despite the blips (blips are all part of the fun! Did i just say 'fun'????). 

Look forward to more of your posts.


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## tracey w (Jul 15, 2009)

Patricia, yes you are all doing great, we are all learning every day and think we always will,

example I was 17.7 going to bed last night, what?? was ok at tea and only had toast, checked again as really could not understand, yes 17.7, had supper and correction and 6.3 this morning.

Thing is on reading your thread i remembered I had fries at a buffet lunch yesterday, although fine at tea they must have really kicked in much later but I didnt think of that as not had that problem before, so thanks I learnt something else, 18months in!


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## Adrienne (Jul 15, 2009)

Hi Patricia

Chips from a chip shop are horrendous.   I still can't get them right.    If we ever do, (very rarely) have fish & chips, J has battered sausage and small chips.    She always goes high, we have tried square waves, dual waves all sort of combinations, normal bolus', normal with temp basal after and nothing works.


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## Patricia (Jul 15, 2009)

Thanks for all this, guys! Good to know we are not alone....

The chips were certainly fried -- real chips, in other words! But we don't have them at home, and he rarely orders them when out -- prefers new potatoes or whatever. Not fish and chip ones, but fried (Nando's!).

Sigh. Temp basal?


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## Sugarbum (Jul 15, 2009)

Oh I wish I didnt love chips so much! Absolutely without fail will muck me over unashammedly every single time. I havent dared tempt them on pump as yet, but I shall be utilising everything that pump has got (!).....and I anticipate that still wont be enough....

I guess temp basal might be the only option? Although, from her post we see Adrienne still cant get it right...then I think the word we might require is "surrender"! 
Good luck! What a pain  x


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## Patricia (Jul 16, 2009)

Again, a problem shared...thanks for good wishes!

I'm still mid-deadlines here (yes, okay, missing them!), so this again will be a short version, but just to say we continue to learn (and at times become befuddled).

Yesterday: high-ish all morning (11,12), corrected each time but did not bring him into range (insulin resistance?) -- but then *suddenly* he's, wait for it, 24mmols eek:) at 4.30pm!!! Yes he bolused lunch, yes he double checked my at times faulty lunch carb counting for him...SO he was home on own and did what wizard said: 5 units or something.

I tried not to look like I was rushing, but got home as quickly as I could. We had *never* given him such a large correction, and may not have even done so in this situation, but he followed instructions of wizard, and gulp...

So an hour later he was 14 (good grief! at least a set change was not in order). Half an hour later, 9mmols. Had dinner and fortunately wizard would not correct.

We held our breaths through an award ceremony at school (achievement and RE!), as this sort of situation is a classic hypo one for him: correction followed by a meal...however, he remained stable and arrived home at 8mmols. By bed he was 7mmols.

He had had a small, rushed dinner at 6pm. This is again a situation which we have found difficult to manage for him traditionally: not a lot of food will bring him low by morning -- before pump.

We tested him at 2.30am: he was 4.7mmol. After much deliberation, we decided to leave him and learn from the morning level. 3am *should* be the lowest of the night. By 6.30am he was fumbling with his kit, testing a 3.8 hypo.

SO: we conclude that we should have reminded him to eat. He was probably starving at the end of the night, and too excited to eat. Everyone else had a snack before bed. He hasn't dropped overnight in any significant way now in at least two weeks...so this is what we think....

Questions:

-- what do we do when corrections don't seem to bring him down? Temp basal? At what point?

-- *should* he still need to eat on a pump? He's not strictly speaking 'feeding' the basal insulin, because there isn't strictly speaking too much of it; in normal circumstances, it keeps him steady at night. But should the basal keep him steady *even if* he hasn't really had a lot of food? People without diabetes would feel wobbly and hungry by morning, but their bodies would cope. Is this something that people with diabetes just always have to plan for (along with everything else?!)

-- where the heck did that 24mmols come from? We have *racked* our brains, and nothing is out of the ordinary. A growing blip? He hasn't had a reading that high in weeks and weeks. And yes, his hands were clean!

Lordy. Will things *ever* settle? Do we have another 4 years of dealing with all over the place levels? (Maybe it's not that bad, don't know. But each day at the moment seems different, with the same levels of activity and food...ARGH!)


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## bev (Jul 16, 2009)

Hi Patricia,

I wonder if the 24mmols was pure excitement? I know that on occassion A has been excited and his levels can go quite high for no apparent reason. Its hard to bolus for excitement!

I suspect that he did have some resistance as the higher they are - the more insulin it requires to drop!

The only other explanation is that perhaps he is coming down with something?

Or could it be the insulin is out of date or has been affected by the hot weather?All very confusing isnt it? Let us know how things go today - hopefully this isnt a pattern.

I know you have said on a few occasions that being on the pump does mean that levels through the night remain stable - so if E was still on MDI - would you have given a snack when he was 4.7 at 2.30am? It seems amazing to me that things can stay much the same over a few hours! If A was 4.7 at this time of night i would give him milk and biscuits - because on MDI there doesnt seem to be that stability.Bev


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## Patricia (Jul 16, 2009)

Hi Bev

Yes I wondered about excitement....He tried to think whether he was stressed or het up coming home...but it could just have been the awards. The weird thing is that it must have been a valid reading, because the huge correction actually brought him down over time. It wasn't just a quick blip...

Re the night: on MDI we probably would have been even more inclined to leave him on 4.7 at 3am, because all the documentation says that you are at your lowest then (Hanas suggests a 3am level of 5 ish, for instance, and that tells you that your basal on MDI is sound). So our expectation would be that he would rise before morning, which on MDI he would have done. We *might* have woken him up and given him a biscuit (8g) or something, but no more. 

Last night we really did deliberate -- to leave or not to leave? I had a feeling that he'd dropped from lack of food (the drop is unusual now on the pump), but we really needed to see what a night left to its own devices did -- AND he'd been running high for HOURS in the day, and some of the day before. So we were fearful of over-dosing carb for such a short time til morning.

Normally, I'd expect E to stay even from 11pm to 7am without a problem, and very little variation (even at 3am), whatever level he's on. If things are good, apparently you can go to bed on 5s and 6s with no trouble. I think last night was just a little strange because he was probably hungry -- so he went from 7 to 3.8 overnight.

Sigh. Text received asking about carb for cake! Ack. Celebration in maths or something...


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## Mand (Jul 16, 2009)

Oh Patricia! How unsettling for you all! I just do not have enough experience yet on the pump to be able to offer you advice. Why the 24?? What a mystery (unless he developing a cold or something). 

Please let us know how things go. Have readings settled down again? I will be watching your post for an update.

Thinking of you and hoping you get things back on track!


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## randomange (Jul 16, 2009)

Hi Patricia

I  haven't commented on this thread, but I have been reading avidly! I have an appointment with my doctor next month, where we should discuss pumps, so it's been really interesting to read what it's actually like starting out! So thank you (and to all the other pumpers recently who are doing this) 

I'm not sure what could have caused the 24 (like Bev says, maybe excitement?), but could the 24 have possibly caused his hypo during the night? I'm just wondering if his liver dumped a whole load of glucose when he had the 24, so didn't have quite enough to dribble out as much as it usually would overnight - kind of like if you have a bad hypo and your liver dumps, you're more likely to have a hypo in the next 24 hours? 

I hope things have settled down a bit more today.


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## Patricia (Jul 16, 2009)

Thanks everyone, so much! Very quickly, now away until tuesday: another high, but not as bad in afternoon -- at least this means a pattern! So will adjust lunch ratio. Otherwise numbers decent today, and the one 11mmol (again) in the morning corrected well, so that's good.

Afternoon correction brought on hypo (ergh), but we are getting there I think.

Will let you know how weekend goes!

Thanks for all. Randomange -- nice to see you!

xxoo


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## Patricia (Jul 21, 2009)

*A good weekend!*

Hey all

Feel we have been gone *forever*, but really it was a good break with relatives and NO COOKING etc in Norwich...

E's numbers have actually been pretty darn good, with more hypos but general levels in green -- almost all of them! Considering that we forgot to bring scales and didn't want to make a deal of carb counting with ten people at every meal, things went well.

The extraordinary afternoon highs of last week seem to just be knocked on the head by a simple ratio change, from 1:11 to 1:10 -- incredible the difference. We also raised the late afternoon basal by 0.05u/per hour -- again, this minute  shift seems to have made a tangible difference.

All in all, I think I'm right in remembering that he went into every single meal with a bgl that was IN TARGET! Heavens!

We did find that we had to react often to one-off situations, which I guess is natural and to be expected -- but again, this is the HUGE value of the pump as far as I can see:

-- Lots of 'unscheduled' exercise, eg swimming and football in the garden. In two out of three instances we remembered to put him on a 75% temp basal immediately after finishing. This seems like magic for him -- he stayed steady, and it's about the right amount of time. The one time we didn't remember to do the temp basal...see below!

-- Lots of late night, bitty eating. This is the one thing I found stressful about the weekend -- we had to test him every night at 12, sometimes 1 and then 3am -- because he'd had a late bolus for a pudding or whatever. The very first night we were so incredibly relieved we have a system in place for this: the 12am test showed 1.9 mmols . We figured this was the result of a *very* light dinner, and we had overestimated the potatoes... With slug of apple juice, he was 8mmols at 1am, so okay in theory (see below!). 

***

Problems and lessons

1. When we forgot to switch him to temp basal yesterday after an hour of football: an hour after lunch (at which he had TWO helpings of the difficult to dose strawbs!), he felt bad. 2.2mmols: carton apple juice. Ten minutes later, still felt rotten, tested 1.7 mmols: 2 glucose tabs and immediate switch to 75% temp basal. We were in the car by this point. Began to feel better, but he fought lows almost ALL afternoon, riding just above 4mmols. After two more hours of this, we switched him to 50% basal and he began to properly recover. Throughout, he ate LIKE A HORSE, and we underestimated carb the whole way, free carbing at least another 20 or 25 grams. Eek! Poor guy. Lesson: ALWAYS use temp basal with him with ANY exercise, and be prepared to be flexible in its use.

2. The first night there -- of 1.9mmols rising to 8mmols fame -- he ended up, to our surprise, waking on 3.8. He then spent the first half of the day with a headache and practically flat out on the sofa...Hmm. It was his first day off school, so this would contribute, but still, we ended up coming to the conclusion that despite our efforts he *must* have dropped again, or remained borderline low, for some of the night -- and he had suffered his first nighttime hypo-head. It was pretty miserable for him, though he didn't complain and we're not even sure if he clicked. He just rested. But we felt bad. We realised later that we should have used temp basal just to be certain -- which we did, even after lowering the nighttime basal rate, two nights later. On this night, he tested at 5.8mmols at 12am, but I could *not* wake him for love nor money to have some juice just to be sure (he was shattered). We then tested him at 3am. He was 4.4mmols. He could then be woken, had some juice, and just to be on the safe side, we put in a 75% temp for six hours. Unfortunately he woke on 14 -- but hey, you live and learn. The new nighttime rate is obviously a good one for him. With the juice he would have been fine til morning, no temp basal necessary. Lesson: again, be flexible with temp basal! Use it!

3. This lesson I feel we must all know: Chips are delicious but hellish. So on the way home we stop at the hell that is IKEA and have to eat, so he chooses the hell that is chips, and we decide to try the dual wave thing with them: 50/50 over three hours. Things are looking up at 10pm -- 7mmols, but by 11pm (hour after end of dual wave) he's at 3.8 -- damn. Treat and put on temp basal until 4am. At 3am he's risen to 16mmols!  Chips, chips, I put a curse on you! Anyway, remove temp basal, give 2unit correction (UNDER dosing from wizard, which suggests 2.9units). This morning, good result: 5.7mmols.

***

We truly feel almost there, and where we are not there, we feel flexible. We want to be going into bedtime with more security, rather than up testing all the time, so we will try a night basal test I think once we settle down, to see if he remains steady throughout. We feel that we are at risk of 'feeding' the basal rate at night, since him *not* eating particularly well at night seems to risk him going low. We also may need to lower the 9pm-12am basal rate (having raised it earlier in the month!), so that he has a higher chance of being on 7 or 8 mmols at bedtime, rather than the 5-ish of the last few days.

It's obvious to us that some of the difficulty in the last two weeks is down to recovering the rates from France, and some is down to his changing needs. The late evening and night basal levels show this, as does the afternoon change: these changes actually revert him to some original levels of the pump, which *were* sending him into hypo-land...

Oh well. It's clear too that his needs actually *fluctuate*. They don't just increase, they also decrease, and differently in different times of day at different times....

Oh, and it's worth noting that he's not on the same pattern as he was at school: we have adjusted his weekend pump settings for his school holidays!

AND: Harry Potter 6 -- mixed reviews here! 

Hope everyone okay. I'll seek out others' threads.

Bev and Adrienne: hope A & J now feeling better? We are sneezy too, but have not gone down with anything...

Mand, Sugarbum: hope there is news on your threads...

xxoo


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## bev (Jul 21, 2009)

Hi Patricia,
I have missed your postings! Glad you had a nice break.

I am learning regarding exercise and temp basals etc - sounds great to me. Yesterday A was cycling for 2 hours and it had a knock on effect right up until this morning, but on a pump, it sounds like its so much easier to manage (as long as your remember to do the temp basal!), i do hate feeding A biscuits and milk just to get him through the night, and trying to get him to eat a biscuit when he is sleepy is awful!

All this makes me desperate to get him pumping! Also, A is very insulin sensitive,even half a dose can send his levels haywire! So having the ability to do such small increments is truly amazing!

I am looking for a good log book as the one he has doesnt have enough room to log all the exercise and food etc - do you know of a good one? Ours was from the hospital and is very tatty now!

Harry Potter, we will have to wait util he has finished the tamiflu, but looking forward to it!Bev


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## Patricia (Jul 21, 2009)

Bev, don't use a log book anymore, but do use a dietician sheet given us by our original person (well, not strictly true -- now use an excel spreadsheet which can handle all the pump settings, but *did* use the dietician sheets). If you pm me your email, I'll send it via attachment and you can use as you wish? We use it irregularly now, but still record food most times, and exercise...

Yes, exercise and the pump is kind of amazing. And waking a child to eat is pretty horrible. This used to happen *even if* we reduced the dose to try to take account of things...Sigh. Bring on the pump for A!


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## Adrienne (Jul 21, 2009)

Patricia said:


> Bev, don't use a log book anymore, but do use a dietician sheet given us by our original person (well, not strictly true -- now use an excel spreadsheet which can handle all the pump settings, but *did* use the dietician sheets). If you pm me your email, I'll send it via attachment and you can use as you wish? We use it irregularly now, but still record food most times, and exercise...
> 
> Yes, exercise and the pump is kind of amazing. And waking a child to eat is pretty horrible. This used to happen *even if* we reduced the dose to try to take account of things...Sigh. Bring on the pump for A!



Hi Patricia

Great stuff, sounds like you are there now.   You are confident to play with the temp basals and tweak without asking permission.  You've got it and have now officially joined the club 

One thing though, please don't beat yourself up with some things.  You may never get it right for chips.   We don't get it right for cinema popcorn, chipshop chips or jacket pot with beans and cheese.    We have tried everything and so only have these things rarely and we deal with it as it happens.

The overnight thing :   try for sensors.   Seriously.   You would not have had to do the 1 am and 3 am or whatever they were or at least the 3 am.   Some nights I don't get up in the knowledge that the sensor will eventually siren and so wake me if a hypo is occuring.    I do have a baby monitor though.   The sensor however could wake E up.  Jessica sleeps like a log and never wakes up.    The sensors are, for me, all part and parcel or pumping and we would never do without them again, ever never never never.  They are my security blanket


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## Mand (Jul 21, 2009)

Hi Patricia
Welcome back! So glad you had a good break! Glad also that you really are on top of things generally. 

Like Adrienne says, do not give yourself a hard time when things go a bit wonky because even when you do your very best, 'd' seems to have a life of its own and does odd things beyond your control!

The fantastic thing is that the pump makes all the blips so much easier to sort out.

I have certainly learnt from you about adjusting the basal rate. We need to work on this. I think we will need it during the school hols as he likely to be more active (well, he will be if this rain ever stops!).

Keep your posts coming please! I learning from you and it is good to know that someone else is going through the same thing. 

Like you must be, i am a bit shattered due to the night testing. Hopefully will end soon!

Bye for now!  x


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## Patricia (Jul 22, 2009)

Hi all

Thanks for supportive words Adrienne and Mand! I think you might be right in that chips may be just one of those things...Oh well.

We also had a problem with pasta last night, which we haven't encountered before: at 3am again he was high, and still high this morning. We've been able to bring him down though, no problem -- so trying pasta again for lunch, a longer dual wave! We will crack this! What do you do again for pasta, Adrienne? We eat a lot of it, and it's one of his favourite things... I seem to remember you doing a temp basal?

We have also today tried the 'uncooked' measurement route, and it has shown what we think is a consistent under-dosing with pasta...so we will see. If he hypos all afternoon, then we've got it wrong again...

Except for the pasta weirdness, numbers continue to be stable and able to be managed. Nights troubling us (still!) in that we keep wanting a 'typical' night, to be sure where he is and track it through -- and we haven't had one in a while! So we continue to test...

Adrienne, yes -- we are able to get a sensor on our PCT package, and just haven't got ourselves to it yet. Some of the difficulty is that our pump training has come through another hospital -- whereas the sensor would be through our local team, so we haven't pursued it yet. But we know it's coming.

I'm sure you're right though. E is quite keen to try one, and that's half the battle I'm sure!

I'm not feeling so well today -- hot and cold, v ache-y, in and out of bed...rather hoping for swine flu so that everyone can be exposed before the damn thing mutates, but...nothing about it has been sudden, and I have no cough. Very dizzy though. Sigh.

For now!


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## Mand (Jul 22, 2009)

Sorry to hear you not feeling well, Patricia! Oh dear! Do let us know how you go. I have a bad back at the moment and it a bit hellish being ill yourself whilst trying to take care of the kids!

Will be really interested to hear how you get on with the sensors if you get them. Do keep us posted.

Bev - A daily journal/diary came with our VEO pump which i use. I think it is excellent as it has a page for each day and space to write boluses, corrections, basal rates, food eaten that day etc etc. I use the 'misc' row to show how much fast acting carb i have given him if he needs some. The one big problem with it is that it is so small! So if you have big writing then you are doomed! My plan is to copy it onto the computer and keep an electronic record instead but the journal certainly allows you to log it all! 

Sorry Patricia, taking over your thread there! Anyway, I hope you feel better soon. Please take good care of yourself and get as much rest as possible. Will be thinking of you. xxxx


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## bev (Jul 22, 2009)

Hi Partricia and Mand,

Sorry your feeling ill Patricia, hope you feel better soon - i understand the idea of wanting to have swine flu - just for the antibodies! Hope it is/isnt what you want it to be!
Adrienne will tell you more about sensors - but from what i can gather, they seem difficult to use/understand at first and a few people are put off them, but apparently once you get the idea of them it makes night times so much easier to handle. (I am sure Adrienne will fill you in).

Mand, thanks for that info about the veo log book!I spent most of last evening trying to devise an electronic one! I am nearly there with it - i am aiming to get it so that if certain foods cause a higher spike (after the 2hr test) than it should, i want that particular food to be highlighted - so i am just trying to work out the maths side of things! But the way i have set mine out seems identical to the one you describe from veo - so i could use the manual log book and just input the electronic version every couple of days or so. Also, can i ask how many basals you have over the 24 hours? I want to input his basals - but not sure if they change hourly or is it more a couple of hours etc? Thanks. Bev


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## Patricia (Jul 23, 2009)

Morning all --

Well, it may just be a morning buzz, but I don't feel on the floor anymore and have no other symptoms  so I doubt this is the pig one...E said he felt weirdly rough yesterday afternoon, but nothing has emerged there either, and his bgls also don't show any blip (hurray!). So whatever we are battling is mild...Shall try to *do* something then today! Useless day yesterday, sleeping and feeling swooshy every time I stood up!

Pasta update: 4 hours seems *almost* right for us (at the moment ). Unbelievably, he tested at something like 7.6 after 2 hours, 5.2 after 3 hours, 6.3 after four hours (at which point dual wave ended). Then at five hours (one hour after ending) he was 5.3 ish. Then he had a shower, which may have hurried on the insulin, because when he emerged he was 4.3 and starting to feel a little wobbly. We deliberately made a straightforward dinner (roast chicken, new pots and corn for kids, salad for us!), and the evening also saw no spike from earlier pasta. So all good! What we think we will do next time is try five hours: he's going a little low after the dual wave finishes on 4 hours, so maybe extendiing it will spread things out a bit...? (Is this right? Does anyone know?!)

I can't *believe* the lack of spike...

Bedtime also looking good: was at 6.7 at 10.30pm. Because of all the fuss over the weekend, and two nights of weird 3am highs, we gave him some free carb *just to be sure*: half a glass of milk, and a small biscuit (about 11g). At 3am he was 8mmols! Yay. This is progress -- went up as we expected, and, provided he tests at around that number this morning (famous last words! ), I think we are certainly almost back to a secure nighttime rate.

Phew!

We have looked at evening numbers over last days though, and given that he has had a tendency to ride around 4-5mmol last thing (and we want him slightly higher for bedtime), we are pulling back the basal rates for 7-9pm and 9pm-12am by 0.05u/hr. You may remember that it was *precisely* these rates we raised a month ago! At the same time we changed the dinner ratio. This all worked for a while, but clearly now things have re-jigged and one of them is too much. The ratio seems a good one -- 2 hour post meal results are almost universally good; it's the pre-bedtime reading which is low: hence we are lowering the basal to raise him slightly.

I wouldn't be surprised if we amalgamate the two evening basal rates into one for the holidays; we eat later and he stays up later, so it could be we need to switch the whole thing to running from 8pm...but we'll see the effect of these tweaks first...(Watch this space as post meal rises once again! argh...)

***

Bev, we are very hooked into our spreadsheet from our pump consultant, which I think the hospital uses for everyone who is interested. We don't write on it -- excel, so lines too small! -- but it has spaces for things like basal rates, ratios, bgls, setting temp basals, free carbs, as well as a comments section for exercise, foods. My husband sits down with it every other day or so and fills it all in so we can see patterns -- or not! It has in-built a system of colours too -- green, yellow and red -- for bgls being in target, high, or low respectively. We send the sheets to our dietician/DSN every few days or as needed, and she responds with suggested changes highlighted in blue! Sounds complicated but works well for us.

Daily, we use the sheets I sent you to record in a messy way, just sitting in the kitchen.

Mand, I think we did get sent a log book with the MiniMed -- but we obviously decided against it completely! Guess we had too much on the go...

***
Re number of basal rates: we started with five rates, and have expanded during the school day to six I think...The shortest any one of ours runs is two hours; the longest, eight (through the night -- we find we are not dealing with a major dawn phenomenon, so don't ramp up the insulin until he's virtually out of bed -- 9.30am during holidays and weekends!)

For now!

xxoo


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## Patricia (Jul 23, 2009)

Waking level: 7.5mmols. Back in business...


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## tracey w (Jul 23, 2009)

Patricia said:


> Waking level: 7.5mmols. Back in business...



well done Patricia, 

can i just ask, i was wondering when you do a dual wave how long after is the insulin acive for?We know a bolus will last approx 4-5 hours depending on insulin type, will the dual wave last that long after or not because its been drip fed in? Hope you understand what i mean,


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## Patricia (Jul 23, 2009)

Know exactly what you mean, Tracey...We have struggled with this, and know nothing scientific about it. However, we started with the assumption that the insulin from a dual wave is likely to not reach its peak until about 2 hours after it ends, just like a normal bolus will reach its maximum strength 2-2.5 hours after injection. 

In practice, this has turned out to be not quite right: we have found that almost without exception E has a lower bgl an hour after the finish of a dual wave than he did when the dual wave finished (eg on a 3 hour dual wave, he is lower at 4 hours than he was at 3 hours...). What is interesting is that it is a not a 'major' difference if the dual wave is going in properly, so he tends to drop only one or two mmols in the hour afterward. 

We have recently begun to test two hours after the dual wave finishes, and have found very little difference from an hour after -- which leads us to conclude (unscientifically!) that the drip feed in means that there isn't the same whoosh in, so not the same peak...

It's also worth noting that we have found no 'surprises' with the dual wave in terms of being hit by insulin late or anything: it does what it says on the box. He has gone low-ish several times at the end of a dual wave though, and we think this simply means he needs to spread it out more...

Does that help?!


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## bev (Jul 23, 2009)

Patricia said:


> Waking level: 7.5mmols. Back in business...



Brilliant! The basal is what is worrying me when A goes on a pump, it seems to take ages to get it just right doesnt it? Having struggled on MDI with growth spurts - it feels like i will be starting all over again...

He he - it makes me laugh so much when i think if someone (not diabetic) stumbled across this site - what would they make of your comment above? Its a completely different language isnt it!But we all 'get it'!Bev


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## tracey w (Jul 23, 2009)

Patricia said:


> Know exactly what you mean, Tracey...We have struggled with this, and know nothing scientific about it. However, we started with the assumption that the insulin from a dual wave is likely to not reach its peak until about 2 hours after it ends, just like a normal bolus will reach its maximum strength 2-2.5 hours after injection.
> 
> In practice, this has turned out to be not quite right: we have found that almost without exception E has a lower bgl an hour after the finish of a dual wave than he did when the dual wave finished (eg on a 3 hour dual wave, he is lower at 4 hours than he was at 3 hours...). What is interesting is that it is a not a 'major' difference if the dual wave is going in properly, so he tends to drop only one or two mmols in the hour afterward.
> 
> ...



yes thanks, thats interesting, so it seems to be working still approx for 1 hour later but no real peak, sounds a great concept.

glad you are feeling better today, wish it would stop raining off work this week


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## Patricia (Jul 23, 2009)

Hiya

Yes Bev, another language...argh! Basals do take ages to set, and the irritating thing is that with growing children they just don't stay 'set' -- you may find tho that you have a good first six or nine months with A -- he may not be going into his huge growth spurt yet, like I suspect E is! However, coming to understand how to adjust the basal, what that means, is like starting over -- but once grasped, just needs looking at! We are now back to the state though where every number is green -- for several days now. Incredible. So long may it last.

Tracey, it's also worth remembering that the bolus wizard (or equivalent) will remember how much insulin is active at any one time, so that's another way of tracing it through. When you eat something after a dual wave, it will let you know how much of the dw it thinks is still active. This won't help with knowing the *peak* of it, but will in terms of dosing afterward...


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## Mand (Jul 23, 2009)

Thank you Patricia for your very detailed and informative post. Gosh, it is all so very interesting! (though, to a non diabetic, it certainly must all sound a little odd! ).

I am still just using the veo daily journal but if you, Bev or anyone has anything better then i would love to take a look, if it ok with you. 

Bev, my son on the following at moment:

midnight to 6am = 0.65
6am to 8pm = 7.0
8pm to midnight = 0.6

Patricia, We still not been taught bolus wizard yet but interesting to read how it works.

Hope you feeling much better soon.


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## Sugarbum (Jul 23, 2009)

Hi Patricia! 

I am so sorry that I havent been on the thread properly for a while and replied (I hold my head in shame, I see it was 21st July!). Your thread is great fun, but I like to read all of what you have put and write a proper reply so tend not to do it on one of my flying visits!

So I have just read five pages! You cheered me up no-end with the IKEA hell! Someone really should bring out a T-shirt with that on the front! As I said before, I dont think any company has manufactured the pump capable of fending the chip carbs away.....it must be like something out of the ghostbusters!

I read your "lessons" with great interest. Temp basal is a god in disguise. But I sympathise, I also forgot to set one the other day when I meant to and crashed completely. As my DSN says, the pump is only as clever as you are! (oh crap!). 

I am also using the Veo book, because I have rather unfortunately been told to by my DSN. Mand were you not given the Carelink? Or are you on mac as well? Apologies if this sounds like I am preaching to the converted but if you use Medtronic witht he Carelink you dont need to write them down. You can view your results in any way you prefer, including a log book format. Rather useful. If it is somethign you havent pursued as yet but are interested to know more, the Carelink brochure is downloadable on the medtronic website.

How long has E been on the pump now? I am loosing track of all time. I already cant imagine things without it and I think I am on day 23!! Are you still enjoying it patricia, or are you finding it very labour intensive? I only ask that because I think that is what is happening to me this week, I finally, just caught up with myself....and found myself completely shattered. You seem to have boundless energy and I am jelous!

Thanks for everything you are sharing patricia, I am really enjoying it and learning too. Loving your numbers! 

Take care xx


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## Patricia (Jul 27, 2009)

Hello all

Sorry for long time!

Continued to feel slightly under the weather, just whacked really and a bit dizzy etc...Then both E and my daughter seem to be suffering -- not loads, but enough to reduce productivity all round!

Anyway. Back now. Thanks to all for replies and support. Always so glad for them.

I'll admit too that I just _couldn't_ bring myself to post on Saturday, as Friday night we had another one of those *very* low lows...And this frightens me so much, I felt all was lost, was overwhelmed, etc. And I just sort of checked out of life on Saturday really.

Friday night we dual waved for four hours some pasta with a prawn/tomato sauce. By three hours he was low, so had some apple juice. Good level at 4 hours (7 or something), but an hour and half later, he was 1.3!!! This was midnight. We woke him (grumpy), treated, set temp basal at 75% until 3am, checked again at 1am. At 3am he was 10mmols, so took off temp basal. Was 9mmol in morning.

So....I confess this event completely knocked me for six, and shook me up all Saturday. My husband is absolutely right in his belief that _this is why we have systems_ -- which we do. Because this is how we catch things. And we never cut corners. We never would have let him go through the end of a dual wave without checking at least an hour after it finished. Nevertheless, my brain goes crazy: how will he manage as an adult? What if, what if?:confused

Okay, so. That panic aside, we do think we understand something of what happened. We also continued to experiment with pasta over the weekend, and came up with some vague conclusions:

1) four hour dual waves seem to be good for pasta with sauces that are high in fat (eg bolognaise or cheesy/creamy) as long as not too late at night. 

2) we tried 40/60 yesterday for four hours (fatty pasta), and he was still 10mmols at end of it. Back to 30/70 then...

3) we will try three or even two hour dual waves for pasta with low fat sauces (eg prawn and flipping tomato!!). A dual wave that is too long for the digestion rate makes a hypo!

4) going low at the end of a dual wave does NOT indicate that the dual wave needs to be longer; it indicates that dual wave needs to be shorter. A higher bgl at end of wave would indicate that it needs to be longer, in order to spread out insulin dose for delayed spike...

Furthermore....

1) we need to be wary of large carbohydrate meals late in the evening. It's clear that E's insulin sensitivity increases in the evening, and esp coming up to midnight. This is not the first time that trailing insulin that late has produced real problems. He seems much more likely to crash that time of night than any other time of day or night, and just pings down with the slightest leftover bolus...

2) we tried the baked potato/cheese/beans combo on Saturday night. As so aptly predicted by Adrienne, it was, er, not successful . We did not dual wave, never having split a baked potato dose before, but he did go a little low (classic sign of needing to dual wave!) after the meal, and then, ta-da! woke on 16mmol yesterday morning. Oops. Having gone to bed on 7.5mmols. I think we will dual wave next time, heaven knows for how long.

***

Along with all this dual waving, I had waves of panic myself that it was all change again, that we had barely hit a pattern and he was changing and blah blah...well it turns out a) he was *little* poorly, so had a couple of blips on Saturday but probably more importantly b) his ratio for a mid-morning snack was still set at school levels, eg pretty high (1:12) so that he wouldn't hypo before his late lunch. Over the weekend, he's actually been having _breakfast_ at about 10.00/10.30am, which means that this was going in on a high ratio, which accounts for a spike before lunch...SO have changed this ratio to lunch levels (which is lower than snack) and we'll see what happens...

So I was panicking and predicting the end of the world for no reason. Not for the first time. 

***

It is, though, SO MUCH always to keep track of and remember. And I do find it all a bit of a downer sometimes. Good control can be SUCH hard work. Even on a pump.

***

Good news is around though, of course.

1) night rates appear to remain solid as a rock. We have not got up to test the last three nights. We have managed to get him to bed on between 6.5-8mmol, and he's safe there.

2) he's sleeping in as long as he wants. We usually test him between 8.30 and 9.30am, but even if he doesn't eat until 10.30, his level is FINE. Amazing!

3) the huge majority of his numbers continue to be in range, with the odd single number or occasional half day blip...We like them apples!


***

E has been 'live' on insulin since 9 June. Seems like two minutes! But already, injections have faded incredibly in my memory, and probably his. I asked him the question Alex wanted to know, what the best thing about being on the pump is...And his answer: being able to eat what you want when you want! 

I suspect that the incredibly unpredictable levels, and the accompanying helplessness and length of time it took to sort them on MDI have completely slipped his mind. I suspect that decent levels feel so immediately in reach for him that the real despair of constantly swinging levels is no longer even in the picture. He wanted to be on the pump because he wanted good levels. Now that he's here, he finds that the best thing is something unexpected: his real enjoyment of food has returned.

Okay guys. Another essay post! Oh well. Will now go catch up on others' threads...

xxoo


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## Mand (Jul 27, 2009)

Oh Patricia, I do so understand how you feel! 

The pump is wonderful, everything is so controlable and good numbers are easier to achieve, no injections and can eat more freely... BUT! yes, it is so tiring! Keeping track of everything, noting what has been eaten, hypos, blood readings, basal changes, 3am checks!!!!!! 

I too, have days of panic about when my son is older and having to do it all by himself but i am trying to make myself just take a day at a time. Also i imagine that by the time they are adults, more advancements will have been made and the maintenance of their diabetes might get easier. 

Your posts are always so interesting to read, so thank you.

Listen, you have a wonderful and well deserved holiday in Scotland! Tell us all about it when you return!  xx


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## Sugarbum (Jul 27, 2009)

Hi Patricia,

I just read the whole of your last post and my heart goes out to you. I cant imagine what you must go through when E has a hypo so low. I can only anticipate it must be terrifying. especially when the new experience of pump is at times so hard to control.

I am sure it is only natural to wonder how he will grow and live as an adult with diabetes. I am not sure if this can offer you any reasurrance but I have lived alone in a flat for 6 years, 90 miles away from my family. I am fiercly independant and have developed my routines and built my safety net that helps me through the bad times. When I hypo, the vast majority of times I am alone, but there are ways of coping. Nothing is fool-proof, but I am sure with the great input you have given E from the begining you can really have faith he will take everything you have taught him into his adulthood.

Where are you going in scotland? Somewhere nice I hope! I went to the Cairngorms earlier this year and fell in love with it. Hope you and the family have a fantastic time. Do enlighten me with what you decide to pack! I do so hope that after all the supplies are packed there is still room for a child or two....!

Patricia, you have a good heart. I imagine you have now dealt with how you felt over the weekend and have re-started the week but keep posting, we are here with you. 

Please excuse me now or there will be no point going to bed before the 3 am check! 

Lots of love Lou xx


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## Patricia (Jul 28, 2009)

Thank you Mand and Lou -- I am hugely comforted. I think there is still a part of me that sinks into denial: this can't be happening. So I almost can't see how it's going to work. And I get cross and upset, foot-stomping mad at the world...Sigh.

E is actually incredibly together about his diabetes. Who knows for how long -- I know he is only at the start of his teens.... I feel in my heart that he will pretty much look after himself. And he's a big one for routine, so that's good news! He's also quite risk averse, which I'm guessing will serve him well.

My battle is with what I wish for him. And it isn't this. But here we have it. I'm angry that he has to deal with all this for the rest of his life. And sad that our level of worry will always be a degree more (though pushed away!)...

But I'm indulging myself too much. I admire your ferocity Lou, and know that my son too has this inner strength. He will not let much stop him, in his quietly confident way. Do you have things set up with neighbours Lou? With friends? How are you finding your systems coping with the pump?

Yesterday saw good numbers again in this camp, though mid-morning still a little high. He's gone to town today though so we won't tweak that basal yet. The tweaking will occur when he is in the usual xbox morning thing! Hypo before dinner, but he'd been riding around 4-5mmols all late afternoon after a light lunch, not done anything about it! Then got involved in something. Didn't feel this hypo, but I suspect that's because it was so gradual and related to hunger too. Quickly up with juice and food.

Pasta again last night (we WILL nail this a bit!). Three hour dual wave, good results, 4.3mmols an hour after finish, so probably a little long. Am thinking now about trying 2.5 hours for this.

Gave some juice and 8g free carb. At 12.30 (2.5 hours after finish of dual wave) was 6.6mmols, so we deemed he was safe to leave. I spent some minutes in the dead of night convincing myself that he had virtually *no* bolus floating around and was highly unlikely to make a plummet for the 1's...and eventually slept. 

He woke this morning on 8mmols: pasta! We may well opt for a slightly increased temp basal for eight hours or so with this pasta lark, as suggested by Adrienne some time ago. This way we could dual wave for a couple of hours, then just peg it all down slightly over a MUCH longer time... We'll see!

For now. Thanks again all.

xxoo


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## Mand (Jul 28, 2009)

All still sounding good, Patricia. As i said before, i completely understand your fear for hwne he grown up and living independantly. But, lets face it, he cannot possibly have any better guidance than you already give him and i believe that will set him up for life! You are both stars to me! x  x


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## Patricia (Jul 28, 2009)

Thanks Mand, gulp! Most entertaining part of day so far is him ringing from town and asking his father how much he should bolus for a 'very large glass of strawberry milkshake'. Uh...right. After faffing about they decided on 55g (straight down the middle between iPhone's carb counting application and Collins Gem!). This plus lunch later gave him a mild hypo...but all well.

Great thing about the pump though: he can have a strawberry milkshake! (it was M & S apparently, before anyone gets too het up that he's eating horribly! He's picky about food quality, and while his friend is enjoying pick n mix bought in town even as I write this, E turns up his nose at it!)


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## Mand (Jul 28, 2009)

Hope he enjoyed his milkshake and that his levels were ok after it. Yes, isn't it lovely now they can do this because of the pump!


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## Patricia (Jul 29, 2009)

Yep levels generally fine thanks Mand, though he fought lows all afternoon and all evening, despite a little temp basal-ing. We think that he's been so horizontal since the end of school that even the walk around town and then the woods rather did him in! So we set him on temp basal half of last night too, just to be sure. Checked at 3am and he was 11mmol, so took him off. But then unusually woke at 6.9 this morning -- not sure why he dropped? Perhaps indicates that he was still processing glucose quickly, so could have been on a lower temp basal all night...Not sure. Will check all other temp basal usages and see if dropping happens...

Anyway, he will no doubt be on almost constant temp basal pattern once in Scotland etc! In fact we were discussing this morning that we shall probably set up another pattern. There will be lots of walking, and he will no doubt need reduced basal across the board. Here we go again...!

We are in Edinburgh for 3 days (never been ! looking forward to it!), then on Mull for four days with close friends (yay! been before for three days without husband, was brilliant -- seals, sailing, very dramatic. Looking forward to being together there.), then to the Lake District for a week -- a place we know well and love. And we are hoping against hope that we will be able to walk this time. Those of you around at Easter may remember that it was during this time that E's numbers when sky-high, 15+ round the clock...and day after day we couldn't walk or do anything. It was really dire. We just could not get them down. Four months after diagnosis and we couldn't get support, all on holiday etc. Dreadful. Just pumped the insulin in and hoped to keep him out of hospital, which we did...

Anyway, we feel sure this time will be better. Back to some of our favourite things. Phew.

xxoo


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## Mand (Jul 29, 2009)

All sounds good, Patricia! I hope you and your family have the fantastic, relaxing and fun holiday that you all thoroughly deserve! Enjoy!!!!!!!!!!!!!!!!!!!


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## Patricia (Jul 30, 2009)

I'm going to call this my last post for two weeks or so! All well, but a strange blip last night: went to bed on 7.7, woke up on 2.9 . 

Been WEEKS since he has woken on anything other than pretty much what he went to bed on (except in instances of weird food like pasta pizza baked pots, none of which he had last night). SO we will test again at 3am this morning and see if something is happening. We do feel that he's generally been a bit lower over the last couple of days...but this is after had a couple of strange leaps the other way recently too!

Sigh! Again, the mess of diabetes. Never stops or lets you rest.

Fortunately, he feels fine this morning so we suspect that it couldn't have been that low for long...Will test things over next days.

OKAY. Haven't heard from Bev or Adrienne here in a while -- nor anyone else except Lou and Mand! is everyone okay? -- but I'm thinking of everyone, and wishing good health and sunny days (well, a few of them) to all. 

xxoo


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## bev (Jul 30, 2009)

Hi Patricia!

I AM reading everything you post - also Mand's and Sugarbum's posts. I just dont have  a lot to add because obviously i have no experience - but i look on all the pump threads before anything else. I am finding it all fascinating as all 3 of you seem to be dealing with very different teams and obviously very different 'blips'! Its already taught me so much - so dont stop! I think we will 'allow' you a 2 week break though!

I hope you all have a lovely holiday - we are off down south tomorrow for just 1 week whilst A goes on his DUK holiday. I just hope the rain stops for us all and we can all have some well -earned relaxation.Bev


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## Patricia (Jul 30, 2009)

Thanks Bev -- appreciate it!

Let me know how A's holiday goes (and yours of course)...E wasn't interested this year, but may be another year...

And yes, fingers crossed for decent weather. Grr...


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## bev (Jul 30, 2009)

Patricia, i really do think its about what age a child is as to whether they want to go on a DUK type holiday. A is only just 11 - so still very enthusiastic about adventure etc.. But i can imagine when he becomes a teen, i would be met with some resistance! Also, i think because we have been to various events with DUK (weekend) and JDRF - A has sort of just accepted this as part of being diabetic - so doesnt really question whether he should be going or not. I know this wont last - so while he is still open to it all - i will endeavour to take him along to anything thats on offer.

I must admit, i am not looking forward to the teenage years with him - although my two daughters were mostly ok - i think A might be a whole different ball game! Bev


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## Northerner (Jul 30, 2009)

Hope your holidays all go well, for kids and adults! Bev, hope the beach hut has some heating in it and is waterproof - don't froget to wear the disguise so Alex doesn't spot you!


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## bev (Jul 30, 2009)

Thanks Northerner,

I have my paper bag at the ready! I think i may invest in a life jacket in case the beach hut does get washed away in all this rain....Bev


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## Adrienne (Jul 30, 2009)

Hi Patricia

I'm so sorry.  I have been reading most of the posts and there was so much I wanted to say about your last long one and I will get around to it.  I've posted a few quick things on some of the other lists but I'm trying to get myself and Jessica sorted for holiday and my eyes have flared up again, I was diagnosed with something called blepiritus a month ago, its common apparently but it bloody hurts and I find I'm walking around with sunglasses on at home.   My cream ran out beginning of the week and I've finally got some today.    

I will reply and I do read so don't stop posting.   If anything glaringly needs my input I would post but I do want to comment on other bits as well.


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## Patricia (Jul 30, 2009)

Adrienne, no worries! I remember your eyes -- so sorry they are playing up. As if you don't have enough going on...grrr... all in good time.

I won't be checking now anyway (okay, well maybe once tomorrow!), and I *think* we're okay... Will you get a break Adrienne?

Bev -- at least you can look quite suave wrapped up in front of a beach hut, and it's quintessentially British. The sunglasses will make the Jackie O look.

We'll be on Scottish beaches -- an altogether more bracing affair, I suspect! But last time we went it was full of Highland cows (yes on the beach) and of course just a hop out in a boat and there were seals and otters and it was pretty amazing. All okay in the rain, too. Sniff!

I'm in such denial about how much needs doing before we leave that I've just returned from a spontaneously booked haircut. Oh dear.

Bev, I'm sure you're right about teen years. I don't have a Kevin (yet!), but street cred is certainly on the agenda...

Bye, all!

xxoo


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## Mand (Jul 30, 2009)

Bye, Patricia. Hope you have a good hol. Look forward to hearing all about it when you return.

Until soon.

Love Mand x


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## Adrienne (Jul 30, 2009)

Hi 

We are off to Spain Saturday morning for a week, so no break from diabetes (but then that's all of us but just in different ways isn't it) but a break from normal life.

Just found out that the new E111 whatever it is called has run out, typical.   Gonna see if I can do anything about it online now !  Don't hold out much hope.  Damn I useless.


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## Mand (Jul 30, 2009)

Bev and Adrienne

Wishing you both wonderful holidays!

Catch up soon!

Love Mand x


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## Patricia (Jul 31, 2009)

Adrienne, if it helps my OH informs me that the E111 is just a courtesy -- I know it's best to have in place, but all the duty of care stuff in European hospitals is in place with or without the actual card.

Have a lovely time, all! Last night we had a weird high night -- messing with pasta dose, alas, so are exhausted today after two corrections and checks. Blast! Oh well.

xxoo


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## Sugarbum (Jul 31, 2009)

Hey Patricia!

I may have missed you already, perhaps you have gone off on your jollies?! I am so envious, I actually think scotland is somewhere I could up-sticks and relocate too. Hope you have a fab time.

Regarding your last post, do you have the John Walsh Pumping Insulin? I cant remember if you mentioned it or not (I should think time is sparce to read though as well as everything else you get up to?!). I have had it a couple of weeks but only picked it up today, reason being I am constantly correcting. There is a chapter in there about challenging your corrections and they should average below 8% of your total daily dose over a few days. It gets waaaaaaay more technical than what I just wrote but resulting from that I am trying to review my sensitivity today, see if its right. I correct a lot. I wonder if you you are for E then maybe this book is useful to you? Got it on Amazon. If a miracle should happen, and I either learn from what I have read, or even more shocking- I absorb it, then I shall try and share what I know!

It would seem we are at opersite ends of the spectrum. A dual wave one or two times has has more than the desired effect for you, and I am at the other, I cannot get it to have any effect or get to a desired number using it. I have normal bolused a pasta meal tonight and will test again later. I need a new strategy regarding dual waving. When you are in post holiday blues and need a pasta discussion perhaps we should get in co-hoots? I would be interested in what weight your pasta is and what percentage you go for (infact I seem to remember you might have already said.....I will scroll back just incase). Pasta eh? ironically Im planning a holiday to Italy, perhaps I should reconsider until they build the turbo pump?!

I shall miss your posts while you are away. We are in good pumping company here arent we?!

Enjoy scotland and those lovely angus beef burgers! YUM!

Safe travels,
Louisa x


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## Sugarbum (Aug 4, 2009)

OMG when are you back??????????????! x


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## Patricia (Aug 23, 2009)

Howdy!

I don't know where to start...Ack! I've been putting this off...Okay, shall just list happenings and then go back and pick it up. Lou: need a pasta talk! We have really started to nail some things, eg the problems -- solutions not yet materialised!

Okey doke: first, all well and healthy. A really, really good holiday with lots of activity, lots of different foods and different courses and different timings, and actually precious few problems. Unbelievable. Numbers a bit all over, but when we looked back, not desperate. Prob slightly too high, and more up and down than we have become used to, but we think the average was actually pretty good...Phew.

1) packed enough to pump half of Scotland, lol. Got there though and at first set change realised we had inadvertently packed a second bottle of insulin with *hardly anything in it*. Oh dear. Calculated that if we had to, we could syringe it out of the emergency pen we'd brought...And that, once we got to the Lakes, we knew the doctor there...But not a great start! In the event, made it, as he was using less insulin anyway...

2) we ended up doing LOTS of late night testing, because we tended to eat late and/or graze. This meant that we didn't get as much sleep generally and you like to get on holiday. Saying that -- we had NO scary numbers -- no huge highs, no desperate lows... And I think this is because we tested regularly and according to our systems: no late bolus without a follow-up test, no end of dual wave without a 1.5 hour test.

3) Temp basals are heavenly. We used them a great deal -- swimming, walking, kayaking. E now turns them on himself, and doesn't hesitate. They seem to 'do the job' for every exercise, with swimming being the only one that will still sometimes bring him low or have the need for 'free carb'.

*First thing to learn for next time*

Get an aquapak for the pump! OMG why didn't we think of this! *First:* spent many hours on small boats! Ack! took turns steering and accelerating! Could all have fallen off! *Second*: my heart *stopped* when I realised later in the holiday E was BALANCING ON STEPPING STONES in a bathing suit on Lake Coniston! With his pump on! He then pretended to fall in...Not overly funny. Anyway, disconnected the baby and he went swimming... *Third*: at home we then went to a beach -- no place to leave the pump safely. We put it in a plastic bag and I waded in with the bag on my shoulder...bit stupid. It also got a bit gritted. Bit stupid. The set change also got gritty and at one point we thought we weren't going to be able to reconnect. Bit stupid!

Saying that, as mother I was holding on. His father on the other hand, was all for letting go, and as I blanched, he reassured over and over that THANK GOODNESS E wants to do this stuff, and can now do this stuff, and hey, we live with it! Life is back! 

Of course, he's right. Very right.

Stay tuned for second and third things to learn for next time...!


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## Mand (Aug 23, 2009)

So glad your holiday went well! Good to have you back.

It is only natural that there were some things that were a bit worrying at the time. You need to experience these things to learn from them. Sounds like you have learned several things that you could do different next time and this is all part of the learning process of the pump. (and a great help to me as you have raised issues that i would not have been prepared for either!).

Look forward to your further posts..............


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## bev (Aug 23, 2009)

I second what Mand said!Bev


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## Patricia (Aug 24, 2009)

Realised after posting last night that with the pump one of the *only* annoying things about it is its physicality, eg having to plan what to do with it physically, keeping it safe etc. The point is, it becomes so much a part of a person that you don't plan for having it off, or keeping it clean/dry until you are faced with it! 

So, to cover all eventualities: an aquapak, and retain a set cover for beach/dirty water stuff. We never normally use it, but it would have been useful as protection at the beach. 

All of this water stuff is important even though E is just as well off not wearing the pump while swimming, cause sends him low -- but it would have been safer in two instances this holiday for us to run him on a very low basal, but tuck the pump away in a waterproof thing, on his person, to keep it safe. I almost croaked when I imagined 2,500 pounds of kit floating to the bottom of the lake...

***
*Second thing to learn...*

Bring an extra belt clip/holder! E uses his clip every day, and five days into the hol it snapped as he sat down: no one's fault, just an awkward angle caught on a chair, and boing! Our host kindly went to his workshop and amazingly managed to bring it back into use for a few days with some kind of rosin glue hard plastic contraption...This alas snapped too. So the pump was stuck in a pocket the rest of the holiday. Not the end of the world, but would have been hard for a girl/woman to manage. To Medtronic's credit though, we ordered another the day we got home: _it arrived the next day, free of charge!_ What?! And who in the US says the NHS isn't up to much?! So incredible I want to write a letter about the absolutely fantastic service....

Also upon arriving home, I found a kind of 'holster' that came with the pump...a similar idea to the clip, just a little larger. If we'd brought that as backup, it would have been a good idea...

*Third thing and probably most important*

Accept certain limitations on spontaneity. In other words, ALWAYS look ahead.

On our last day on Mull, we all took up our hosts' offer to climb up behind the house and see the old village and the astonishing views. On went the boots, doggies hooked up to leads, everyone in a anorak except E, who was in a fleece and really didn't want a coat.

Off we went. Straight uphill at quite a clip. Now, we were having a fab time. E was in front with doggies, charging on...We were all chatting away like mad...And half an hour in I thought, need to catch him. He needs to test. This is hard work. 

I didn't catch him for about another 15 mins, by which point I'd caught up with my husband too (no, I'm not slow -- my daughter by now was busy collecting wildflowers and getting distracted!), who, like me, didn't suddenly want to show E up by yelling up to him. Fortunately, we signed to him to stop and wait for us, and the host seemed to catch on and sat him down, still chatting...

He was 2.7. Meanwhile a squall was coming in and it started to drizzle. He had some glucose, felt okay, and walked another five minutes. Felt bad again: 3mmols. More glucose. Most of our party had gone ahead.

My husband sat down on the fell and wrapped his coat (duh!) around E. I went ahead to let others know what was happening. The chappie went back to sit with my husband and son (and for safety: one could always come down for help), and one of the dogs (an incentive: E loves them, we don't have any!). 

The lady of the house, my daughter, me and the other dog continued the descent, me silently berating...He should have gone onto a temp basal almost immediately. He should have brought a coat. First and foremost, _we should have asked how long and hard the walk was, for goodness sake!!!_

Seven glucose tabs later he was up and running, and they'd practically caught the rest of us by the time we all rolled up back at the house.

Seven glucose. It was the low point of the holiday. E admitted he had been scared, up on the hill, rain coming in, isolated. My husband admitted he'd begun to make calculations about how far he could carry an 7.5 stone weight. Thank goodness for another person, who could and would have willingly shot back down the hill for more supplies or people...

The lesson's obvious: get over the British politesse of not asking, and ASK. Accept limitations on spontaneity and PLAN. We thought the walk was a little half hour jaunt. All in all, it was two hours. If we'd known this before setting out, none of it would have happened.

***

Sigh. I'll admit there were times on the holiday, as wonderful as it was, that I thought 'why us?' 'why my baby?': when we had to wake him up again at 1am , or stop him in an activity to test, or even when I had hysterics about the pump hovering over the lake. I'd have been happier having hysterics over something else, it's that simple!

It's good to laugh at it all, but there's no getting past the constant presence of diabetes, the unwelcome guest who never leaves...

*** 

Saying all this, it was the first break we've managed since diagnosis, and the most relaxed any of us have been in months and months, due in no small part to the pump and its incredible flexibility.

So there.


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## bev (Aug 24, 2009)

Patricia,
I understand why you are angry with yourself for this - i have done this in the past and it makes you feel terribly guilty doesnt it? But i have started taking the view that all of these little 'blips' are actually a *good* thing. E will NEVER go on a walk again without asking the duration and the level of climb etc -he has learnt a valuable lesson - but the main thing is you were both there to deal with it if it had got out of hand.

Last week, we went to a market town for the day and A had left his bag in the car (never done this before). Obviously he had to go hypo in the middle of the high street! So i said dont worry about the bag and testing - your obviously hypo so i have some glucotabs in my bag - but when i looked in the pocket the packet had opened and they were all loose! They had bits of hair and other things stuck to them - so i had the option of giving him these or panicking! I panicked and went into a shop for a bottle of fizz - i just got it out the fridge and pushed my way to the front of the queue saying how i am sorry but i need this for my hypo son outside - they all let me pay and i ran out of the shop with the thought in my head that A would be lying on the floor surrounded by paramedics and people shouting 'wheres the mother'!

The bench i had left him sitting on was round the corner out of sight of the shop - but in reality it was only a 20 second walk. When i got to the bench he was looking pale and there were no paramedics or people shouting!

So our lesson was - always check he has his bag - and ditch the hairy glucotabs in favour of a plastic container to keep them nice and clean! Now A always checks he has his bag as do i!Bev


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## Patricia (Aug 24, 2009)

I'm certain you're right Bev -- it's just unsettling, isn't it? And of course my brain goes into overdrive -- what if we hadn't been there? What if, what if....

Sounds like you had a similar experience though...I know what you mean about 'where's the mother?'! Like, you dreadful woman...And all the while, you are your worst critic anyway and wrestling with all kinds of guilts and horrors...

I forgot to mention that on this beach E also decided he needed to walk to the water to wash sand off. He took off on his own, and within a few minutes was out of sight. It was a VERY crowded place. I began to agitate, but my husband was calm (on the outside!). In a couple of minutes we could just make him out as he set out back to us, but neither of us wanted to show we didn't trust him to know himself by going to fetch him...Anyway, several minutes later (about 10mins to be honest, ages!) he showed up, walking steadily, but obviously a bit freaked out. He was panicking, thinking he was low, and didn't have a thing on him...He wasn't low, but the experience had really made him think about setting out with nothing. He had also panicked of course because he was afraid of not being able to find us etc, and this had all contributed to making him wobbly --so he felt low. 

Thing is, in a bathing suit -- what to do about carrying glucose? Not to mention a kit? I've found the link to the aquapac, which looks heavenly -- http://www.aquapac.net/ukstore/insulin-pump-case-code-154-1162-0.html. When we get it I'll see if there's room for some glucose in there?

My son has mentioned recently that he finds his testing kit comforting now. Clearly he was at a loss without it on the beach -- but he was safe, because by this point we knew where he was. We would have fetched him in another couple of minutes. But the lesson was a good one for him, I think, despite his panic. We talked about finding a way to always carry glucose -- then he could have just popped a couple whether low or not, to feel safe.

Understandably, he's become afraid of going low, esp overnight, because it's now clear that he doesn't wake up when low. We are gradually discussing how to ease him and us of these fears -- a CGM perhaps. But it's becoming a problem for him, more so as so much else gets easier.

xxoo


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## bev (Aug 24, 2009)

http://www.waterproofcases.net/small.html

The key holder thing that hangs around the neck may be a possible for holding the glucotabs? On the other forum a child recently went swimming with the aquapac at a beach and got the plastic caught on some rock and a small tear appeared - the pump was sat in a puddle of water - but still working perfectly! So perhaps keeping the glucotabs in a seperate pouch might be a better idea? Not sure really!

Also, although medtronic say their pumps arent waterproof - they are - but they cant offically say this as a child once had a cracked screen which let in water and the pump failed - so they cant say that its totally 100% waterproof - but from reading the stories on the other forum - they are pretty much bullet and water proof!Bev


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## Patricia (Aug 24, 2009)

This is good to know Bev! Wish I'd known before I went...less hysteria...!

Want there to be as few 'pouches' as possible really. It's already quite a lot to have the pump when so exposed as on a beach (a number of teenage girls apparently switch to MDI for the summer for this reason?). So I'll see how roomy the pump bag is...

Re the other forum: I have got to get myself together to go on that. I think I'd like it for a different set of views and expertise...

Thanks!

xxoo


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## Mand (Aug 24, 2009)

Gosh what a scary experience for you all but it is so difficult to be constantly looking ahead and planning. Do not feel bad about it just think of it as a learning curve.

Good to know they are more waterproof than we realised! 

When i read your words 'why us' why my baby'? I shed some tears. Oh Patricia, how times i have said this to myself. 

I think we do a great job but the reality is that diabetes is demanding and as much as we need to be postive most of the time, we have to allow ourselves the sadness. Better out than bottled up, eh? 

Thanks for sharing your holiday experience. 

Love Mand xx


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## Patricia (Aug 24, 2009)

Thanks Mand.  Really appreciate the support and tears. What else can we do? Well, I guess we could not do any of it, and we know of those who don't...but this is us, and we all do. Cry and then stand back up!

xxoo


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## Mand (Aug 24, 2009)

Here, Here! xx  xx


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## Lozza (Nov 12, 2009)

hi i was wondering if anybody could give me any advice on gettin a pump?! im 17 and an active dancer at the same time as attemptin to juggle a levels and other courses. very stressful at the moment. im starting to get depressed and my consultant asked if going on a pump would be easier than injecting about 7 times a day, however i dont kno what the consequences would be if my body didnt like it as i have shows in a few weeks. would it cheer me up and make me happy again? 
any help would be appreciated.
thanx 
lauren


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## Steff (Nov 12, 2009)

hi there lauren and welcome i cant help but thought id send you this link just click it and it is a running thread that pumpers use or parents use with kids who have pumps x

http://www.diabetessupport.co.uk/boards/showthread.php?t=3554


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## Patricia (Nov 12, 2009)

Hi Lauren

Your  best bet for this question is to go to the Pumpers Thread, which is a sticky on this site. Lots of advice there! Basically: yes to your questions. Not sure about making you happy again, but I think that pumps are the way forward...

It does however take quite a while to get your levels okay on a pump, and I guess I would wait until after your shows...I've been a dancer in my time, and I know what it's like to have things coming up...stressful! With the pump you need to test a lot to get your levels right, and you may find that for several days in a row your levels aren't good etc, so maybe after the shows?

Put this question on the big thread, though, and see what happens?

Best of luck

Patricia


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