# Sigh, dietitian



## Shivles (Sep 21, 2016)

After high hopes for the dietitian helping me make some changes I'm left frustrated. After she admitted grains are non essential food she still said I need to feed them to my child despite them sending her hypo constantly  (before the insulin is able to bring her down). Multi seed bread sends her soaring above 14 but as it's 'healthy' I should keep giving it her...

The only useful thing she said would she'd speak to the consultant about us getting the CGM for a few weeks while I take food diaries.

Trying not to worry what all these hypers are doing to my baby in the mean time


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## Northerner (Sep 21, 2016)

Sorry to hear she wasn't very helpful  It can be very hit and miss getting a dietician who looks at the individual and works out something that will suit _them _not just parrot standard advice 

It would be good to get a CGM so you can see more clearly what happens when she eats various things, so good luck with that


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## Shivles (Sep 21, 2016)

It would certainly save me testing her 20+ times a day to see what's happening!

Maybe I'm being paranoid but I got the feeling she didn't believe me, when I told her so far ALL grains are causing issues she replied 'oh well she must be very carb sensitive...' of course she is she's 16mo, 24lbs and TYPE ONE DIABETIC :bangs head on wall:


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## LHD (Sep 21, 2016)

I'm six months into my type 1 diagnosis, and I was in the same boat. I've swapped grain for high protein/good-fat foods, and feel great. I use bananas and berries spread over the day for carbs, and I manage to avoid readings above 11 now. Sometimes, all I need to do is look at grains and I hit 15+ or use a shed load of insulin, which I don't like doing. My rule now is if it's more than 10g carbs to every 100g then forget about it!


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## Martin Canty (Sep 21, 2016)

Shivles said:


> After she admitted grains are non essential food she still said I need to feed them to my child


I would be interested in the justification of feeding "non essential food" to someone who cannot tolerate grains.....


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## LHD (Sep 21, 2016)

Good point. There's so many conflicting expert opinions out there. Who do you trust?


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## Shivles (Sep 21, 2016)

Martin Canty said:


> I would be interested in the justification of feeding "non essential food" to someone who cannot tolerate grains.....



She said for b vitamins when I challenged that, I asked where we got those from before cultivation of grains, she didn't understand the question


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## Shivles (Sep 21, 2016)

15.6mmol after nothing since 12:30. I'm done for the day, she's having a low carb dinner with me, I'm not having her suffer through the night just because they can't see sense


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## LHD (Sep 21, 2016)

Shivles said:


> She said for b vitamins when I challenged that, I asked where we got those from before cultivation of grains, she didn't understand the question


I like that "before cultivation of grains" idea. That's what I'm trying to do with all the nuts, seeds, berries ... in my diet now. No more pasta carbs, I use grated zucchini ... so I'm applying the principle of what I would survive on in the wild without a farm or spear as experts seem to be agreed on the fact that our bodies are similar to what they were when we were hunter gatherers or more gatherers I guess for me


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## Shivles (Sep 21, 2016)

LHD said:


> I like that "before cultivation of grains" idea. That's what I'm trying to do with all the nuts, seeds, berries ... in my diet now. No more pasta carbs, I use grated zucchini ... so I'm applying the principle of what I would survive on in the wild without a farm or spear as experts seem to be agreed on the fact that our bodies are similar to what they were when we were hunter gatherers or more gatherers I guess for me


The more you read the more you realise, I firmly believe now we only ate plants when all the meat was gone to avoid starvation, many many people thrive on a meat only diet  (myself included although my sugar addiction put a stop to it in the end!)


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## Martin Canty (Sep 21, 2016)

Shivles said:


> She said for b vitamins


Thus dismissing all the other classes of foods.... Oh, and all then B vitamins are found in abundance in animal products without having to be artificially enriched.... Sighs in despair.......


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## Shivles (Sep 21, 2016)

Martin Canty said:


> Thus dismissing all the other classes of foods.... Oh, and all then B vitamins are found in abundance in animal products without having to be artificially enriched.... Sighs in despair.......


Ah but there's not enough in lean meats! It's the fatty bits you need apparently to get enough which I pointed out would be fine on a LCHF diet, got a saturated fat lecture. ..

At least I know not to waste my time in future! My Dr Bernstein book should arrive tomorrow anyway so hopefully that will help me because the diabetes team sure aren't!


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## bilbie (Sep 21, 2016)

Shivles said:


> The more you read the more you realise, I firmly believe now we only ate plants when all the meat was gone to avoid starvation, many many people thrive on a meat only diet  (myself included although my sugar addiction put a stop to it in the end!)


It seems we ate a lot of the liver, 'brains, marrow, fat' and blood. we gave most the meat to the dogs.

Given you are getting Dr. B's book, I should be able to post this without being seen as trying to influence you.
What Parents of T1 Children Need to Know
www.youtube.com/watch?v=dPd78PnsQNA&list=PLs_TA02I6IvU8hlBhash0Ww3Nn3EkBYWd&index=1


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## Pumper_Sue (Sep 21, 2016)

Has your daughter been tested for coeliac? If not getting her checked would be a good idea. How many carbs a day is your daughter having each meal?


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## Shivles (Sep 21, 2016)

Pumper_Sue said:


> Has your daughter been tested for coeliac? If not getting her checked would be a good idea. How many carbs a day is your daughter having each meal?


They told me they was at hospital and never heard anymore about it so presume it was fine. 

It varies by meal but typically between 20-40g


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## bilbie (Sep 22, 2016)

I think I've said this before, but I can't understand why they want so much carb. Given that 100g is 40%carb on a 1,000 cal infant diet. I personally would target no more than 100g/day as a starting point. That may be still problematic, given what you have posted. I would look at 75g, then 50g.
50g is equivalent to 100g adult diet, which most people accept as OK. I wouldn't do the same with protein as kids need more % than adults


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## Owen (Sep 22, 2016)

Try to stay open minded. I am still not convinced that fatty meats are a good thing. I try and get some oily fish two to three times a week. You can combine healthy fats to slow down glucose release from carbs. Your LO is type one, it is important to get the insulin at the right level, if you focus on diet whilst not doing this, then you are just going to run around on circles. I have not eaten processed foods for months now, this has been the biggest change for me. I try and have one carb free meal a day. Moderation and balance are important. Prior to insulin, diet controlled diabetes ended the lives of too many young people. Try to get patient and get as much information you can before committing to any specific approach. I knows it is hard to do this when you are compelled to protect your child. Remember this disease is long term and you are out of the danger zone, so now think of it as tweaking things slowly until you find the right balance.


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## Owen (Sep 22, 2016)

bilbie said:


> It seems we ate a lot of the liver, 'brains, marrow, fat' and blood. we gave most the meat to the dogs.
> 
> Given you are getting Dr. B's book, I should be able to post this without being seen as trying to influence you.
> What Parents of T1 Children Need to Know
> www.youtube.com/watch?v=dPd78PnsQNA&list=PLs_TA02I6IvU8hlBhash0Ww3Nn3EkBYWd&index=1


@bilbie you are passionate about something that you have discovered and obviously benefits you greatly. Sometimes this can be misunderstood by many as being a bit radical. I may or may not agree with you (still trying to decide what is right and what is guff). But I will defend your right to have an opinion. Please continue to be passionate. But remember there is no one size fits all with this complex and varied disease.


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## Owen (Sep 22, 2016)

Shivles said:


> 15.6mmol after nothing since 12:30. I'm done for the day, she's having a low carb dinner with me, I'm not having her suffer through the night just because they can't see sense


Basal insulin cannot be be correct


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## bilbie (Sep 22, 2016)

Owen, It was only because Shivles bought the Bernstein book that I put up the Bernstein video. His point is to have normal BG levels, something I think we can all agree on.
Also Bernstein isn't LCHF ketogenic.

Given that the respected Joslin diabetic clinic recommend 30-45% carb, I'm quite comfortable saying the same. I think the problem lays with misinformed NHS dietitians and nurses

I think it was the lack of insulin that ended the lives, The very LCHF ketogenic diet was to extend life. It needed the least amount of insulin production 
the pre-insulin diet
http://www.icsarchive.org/paperback/cookbooks/diabetic_cookery_1917.pdf


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## Owen (Sep 22, 2016)

bilbie said:


> Owen, It was only because Shivles bought the Bernstein book that I put up the Bernstein video. His point is to have normal BG levels, something I think we can all agree on.
> Also Bernstein isn't LCHF ketogenic.
> 
> Given that the respected Joslin diabetic clinic recommended 30-45% carb, I'm quite comfortable saying the same. I think the problem lays with misinformed NHS dietitians
> ...


Please don't take this as a criticism, you're right to have posted the information, as stated I will defend anyone to stand their corner regardless of my own opinion. I do read your links and get the precis. I am still pontificating the deluge of opinions and information. I am just concerned that the importance of balancing the insulin therapy becomes obscured by the long term need to find the right balance of dietary need for this youngster. I trust that you agree that insulin in type ones is essential and paramount to get correct. Please please continue to be passionate about your cause and don't be offended if I or others ask polite questions. Higher level thinking leaves more questions than answers.


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## bilbie (Sep 22, 2016)

It may be because I'm sensitive on lower than 75-100g for kids. I was hesitant to post Bernstein, because even though he isn't LCHF keto. Some still find his lower carb, if needed to obtain normal BG confronting. I previously posted a link the the T1 grit FB page that was seen as not helpful.

I'm much more relaxed talking about adults. Even though if I had a T1 kid, I wouldn't use my keto diet. I don't see the need for a T1 kid to be in ketosis, but it would be lower carb, higher proteins and fats. With what I currently think. I would have a pump and half basal dose with tresiba and half with the pump. The reason is that when just on a pump and a site fails, ketones and high BG happens so quickly. Half pump still leaves a lot of flexibility for basal rates and has a half dose long acting to minimise ketones and BG rise when site fails.
I may change my mind about pumps if anything comes from pumps causing long term problems with site damage, as opposed to injections.


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## Northerner (Sep 22, 2016)

Owen said:


> Try to stay open minded. I am still not convinced that fatty meats are a good thing. I try and get some oily fish two to three times a week. You can combine healthy fats to slow down glucose release from carbs. Your LO is type one, it is important to get the insulin at the right level, if you focus on diet whilst not doing this, then you are just going to run around on circles. I have not eaten processed foods for months now, this has been the biggest change for me. I try and have one carb free meal a day. Moderation and balance are important. Prior to insulin, diet controlled diabetes ended the lives of too many young people. Try to get patient and get as much information you can before committing to any specific approach. I knows it is hard to do this when you are compelled to protect your child. Remember this disease is long term and you are out of the danger zone, so now think of it as tweaking things slowly until you find the right balance.


I'm very much with @Owen on this. Whilst an 'unconventional' diet may be appropriate for an adult, I am not convinced that such an approach is the best thing for such a young child. It's important to find that balance - as well as you can manage - with insulin doses and timing of injections, carb counting and learning about all the other influential factors on a largely conventional diet. I do understand that it can be alarming to see double-figure numbers after eating, but a diet with a moderate carb content should be manageable on insulin - even more so if you can get her on a pump. You are very much in the early stages of building experience with her diabetes, so there will be lots of unexpected puzzles and 'learning exercises', but young children are very resilient and their bodies can deal with these things better than adults. Remember that we have many people here who were diagnosed as small children who now have decades of living complication-free, having been raised on varied diets and at times when knowledge and tools were far less sophisticated. Please, as @Owen says, persist at getting those insulin doses refined as best you can, because this will give her the greatest flexibility for the future as she grows. Also, I'd recommend seeking the advice of other parents on the Children with Diabetes Facebook Group so you can get a broader range of experiences to draw on


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## Pumper_Sue (Sep 22, 2016)

Shivles said:


> They told me they was at hospital and never heard anymore about it so presume it was fine.
> 
> It varies by meal but typically between 20-40g


For such a small child that is a lot of carbs even as an 8 year old I was never allowed that amount per meal (40 carbs) try keeping to the lower end and dumping things like pasta and rice from her diet


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## bilbie (Sep 22, 2016)

Whilst I agree that a LCHF ketogenic is unconventional and unwarranted for a normal T1 child/adolescent diabetic. I see nothing wrong with the 30-45% of Joslin diabetic clinic or even lower with Bernstine if needed. Both being nonketogenic.

I also note that some adult T1s have chosen a LCHF ketogenic diet for themselves, I don't have an opinion whether in or out of keto is better. Other than with keto the brain uses alternate ketones as fuel and you don't get a normal hypo symptom, so you need to be more vigilant with testing.  
I would put BG and weight above both, you do what's needed to be done.
I think T2s are better in keto


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## Shivles (Sep 22, 2016)

I am aware the insulin doses need perfecting but in the mean time it's hurting her, she's spending most of the day high and miserable, I can't just watch I need to try and help her however I can.

I just feel like no one is really helping me, no one else can see how bad she feels and so aren't that concerned with her levels. The team are quite happy to not talk to me for days at a time.


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## bilbie (Sep 22, 2016)

for interest only..This appears to be the diet when insulin was first being used.
http://loraldiabetes.blogspot.com.au/2010/04/bantings-diet.html







_"
"I have been sugar-free [urine test for sugar] for the last five days and getting about 1900 calories consisting of Pro 60 Fat 163 Ch 44."_

Those numbers do work out close to 1900 calories. The percentages of calories from macronutriuents are approximately:

Protein 13%
Fat 78%
Carbohydrates 9%
"


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## Northerner (Sep 22, 2016)

Shivles said:


> I am aware the insulin doses need perfecting but in the mean time it's hurting her, she's spending most of the day high and miserable, I can't just watch I need to try and help her however I can.
> 
> I just feel like no one is really helping me, no one else can see how bad she feels and so aren't that concerned with her levels. The team are quite happy to not talk to me for days at a time.


I am sorry, it must be so hard and I really do feel for you {{{HUGS}}} It's a shame your healthcare team aren't more proactive  I forget - has a pump been suggested? I can understand that the high levels you are seeing are alarming, but things WILL improve and these fluctuations will not be causing lasting damage. I think my point about diet is that, especially in one so young, it is only one factor amongst many - growth spurts, excitement, high activity can all have as much, if not more, impact on levels, and it can take time to refine things to deal with, so you mustn't feel that you have to get everything right overnight. If she's high most of the day, might it be due to a lack of basal insulin? 

Clearly, my experience is very different, but it took me months to 'crack' the bigger problems, and years to discover all the smaller things. I've always had a good HbA1c, but that was originally largely due to the fact that I was getting a lot of hypos which balanced the highs - now my levels are more consistent, so I know I am doing better even though my HbA1c is largely the same.

Do you know any other parents, or could your clinic put you in touch with some?


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## Pumper_Sue (Sep 22, 2016)

Shivles said:


> I am aware the insulin doses need perfecting but in the mean time it's hurting her, she's spending most of the day high and miserable, I can't just watch I need to try and help her however I can.
> 
> I just feel like no one is really helping me, no one else can see how bad she feels and so aren't that concerned with her levels. The team are quite happy to not talk to me for days at a time.


We are trying to help but must admit I feel that what ever we suggest it thrown back at us to a certain extent.
Pump/CGM and lowering her carbs and the type of carbs will all help her no end. Keep her diet nice and simple then it's easier to sort out her levels IE stick to the same amount of carbs each day do not vary it until you have some stability.
If you are not happy with the team you are under then ask for a transfer elsewhere.


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## Owen (Sep 22, 2016)

Pumper_Sue said:


> We are trying to help but must admit I feel that what ever we suggest it thrown back at us to a certain extent.
> Pump/CGM and lowering her carbs and the type of carbs will all help her no end. Keep her diet nice and simple then it's easier to sort out her levels IE stick to the same amount of carbs each day do not vary it until you have some stability.
> If you are not happy with the team you are under then ask for a transfer elsewhere.


I don't think anything is being thrown back. A parent desperate to see their child in less distress. The other parent that is also diabetic but needing different treatment. I really feel for you @Shivles. I promise that this will get better soon, maybe a temporary reduction in carbohydrate until the basal dose is sorted. The key to the solution is the basal dose. Once you regular fasting levels, then the diet and bolus will kick in and help further. Remember carbohydrate is in a lot of vegetables with good GL loading, carrot and Swede mash gets rid of the desire for mashed  potatoes. Casseroles with diced vegetables give good taste and less reactive carbohydrate. Keep your chin up keep using us, hopefully we can collectively come up with some ideas.


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## Shivles (Sep 22, 2016)

I'm not trying to throw things back at people I just need to do something and so far all the adjustments to doses aren't doing anything. 

Dad has buried his head in the sand and isn't helping me in any way, I don't blame him but it kind of feels like I've been left in the thick of it by everyone. It feels like there's no sense of urgency from anyone because no one else can see how it's affecting her, I have to watch her go up and down all day and the mood changes that come with it. I dread feeding her because her levels will shoot up, it feels like feeding my baby poison. No one else has to try and comfort a toddler with a blood sugar over 14 who is dehydrated, lay on the floor just crying because she feels so bad.


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## Owen (Sep 22, 2016)

Just to add to my reply. One thing I can promise, is that your children will be a source of worry, my twins refuse to be tested even though they are both at risk of also being Mody. They have frequent riding accidents. Party hard. Just dream up new ways of causing anxiety. Sophie is a vegetarian that does not like vegetables, so god knows how she alter her diet.


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## Owen (Sep 22, 2016)

Shivles said:


> I'm not trying to throw things back at people I just need to do something and so far all the adjustments to doses aren't doing anything.
> 
> Dad has buried his head in the sand and isn't helping me in any way, I don't blame him but it kind of feels like I've been left in the thick of it by everyone. It feels like there's no sense of urgency from anyone because no one else can see how it's affecting her, I have to watch her go up and down all day and the mood changes that come with it. I dread feeding her because her levels will shoot up, it feels like feeding my baby poison. No one else has to try and comfort a toddler with a blood sugar over 14 who is dehydrated, lay on the floor just crying because she feels so bad.


I completely get where you are coming from. A short term reduction in carbohydrate will help you sort the basal dose. Then bring it back in gradually. I know this kill you to do this. But only test before meals whilst doing this, so that you do not start panicking about the post meal readings. Obviously test if you think he/she is getting low. Once you have these in range, then test before and after with the aim to get a rise of 2 to 3 mmol. If the meal stays in range keep it, if it does not change it.

Good luck


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## Shivles (Sep 22, 2016)

Owen said:


> I completely get where you are coming from. A short term reduction in carbohydrate will help you sort the basal dose. Then bring it back in gradually. I know this kill you to do this. But only test before meals whilst doing this, so that you do not start panicking about the post meal readings. Obviously test if you think he/she is getting low. Once you have these in range, then test before and after with the aim to get a rise of 2 to 3 mmol. If the meal stays in range keep it, if it does not change it.
> 
> Good luck



I don't know how to correct the basal, I'm doing what the DSN says but half the time they only change basal when I say I think it might be off :/


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## Shivles (Sep 22, 2016)

High all night, give her correction plus food insulin and breakfast as usual, now she's at 2.3  it feels totally out of control


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## Owen (Sep 22, 2016)

What are their current fasting readings and how much long lasting insulin is being. Try to contact your DSN and get them on side, explain how upsetting this is and you really want to help your child to stop suffering. Don't be surprised if they seem less urgent than you expect. They will be more concerned with long term results than short term discomfort.


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## Owen (Sep 22, 2016)

Shivles said:


> High all night, give her correction plus food insulin and breakfast as usual, now she's at 2.3  it feels totally out of control


Don't give corrections, you will end up chasing the dragon. Only give covering insulin calculated against carbohydrate. You will still not truly their correct ratio. This can be tuned once the basal is fixed


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## bilbie (Sep 22, 2016)

and of course give glucose for the low


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## Shivles (Sep 22, 2016)

Owen said:


> What are their current fasting readings and how much long lasting insulin is being. Try to contact your DSN and get them on side, explain how upsetting this is and you really want to help your child to stop suffering. Don't be surprised if they seem less urgent than you expect. They will be more concerned with long term results than short term discomfort.


This week's have been 
9.9
4.4
3.8
7.7
17.3
4.4
5.4
14.4

She was on 1 unit of levemir at 7pm, went up to 1.5 Tuesday


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## Shivles (Sep 22, 2016)

Owen said:


> Don't give corrections, you will end up chasing the dragon. Only give covering insulin calculated against carbohydrate. You will still not truly their correct ratio. This can be tuned once the basal is fixed



Don't correct her? Will she not just stay high then?


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## Shivles (Sep 22, 2016)

bilbie said:


> and of course give glucose for the low


Yes I have done, I don't argue hypos need sugar


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## Northerner (Sep 22, 2016)

Shivles said:


> This week's have been
> 9.9
> 4.4
> 3.8
> ...


On the whole, those don't look bad at all, with just those two obvious exceptions - was she higher than usual before bed on those occasions? So tricky on such low doses! Any increase or decrease in basal will be relatively large. Has a pump been discussed at all? I'm guessing not if they are not being too helpful. Even adults on such low doses go to the top of the list for pumps because they can deliver much tinier amounts, and on an hourly basis.


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## Northerner (Sep 22, 2016)

Shivles said:


> Don't correct her? Will she not just stay high then?


In such cases (which I think is what you said you did) I would include a correction dose in with her normal breakfast dose, but I would keep it to mealtimes only and not correct in between meals to avoid 'stacking' doses and, as Owen suggests, losing sight of what the ratios need to be.


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## Shivles (Sep 22, 2016)

Yes a pump has been menu one but it's something I would consider a last resort. She's not even been diagnosed 2 months I don't want her attached to something and I'm extremely skeptical of the practicality with a toddler


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## Annette (Sep 22, 2016)

Shivles said:


> Don't correct her? Will she not just stay high then?


Try just giving her half the correction you normally would. That will bring her down a bit, hopefully out of discomfort, but wont send her hypo. (Thats if you can give her that small an amount, I realise she's on very small doses right now.)
Perhaps (never having been on Levemir myself) she needs it twice daily, to keep a more even keel. (It is usually given twice a day, I realise that small children may not need that - but then, no-one's body quite plays by the rules...)


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## Owen (Sep 22, 2016)

Correcting is so hard to get right, better to be patient and delay next meal


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## Shivles (Sep 22, 2016)

Northerner said:


> In such cases (which I think is what you said you did) I would include a correction dose in with her normal breakfast dose, but I would keep it to mealtimes only and not correct in between meals to avoid 'stacking' doses and, as Owen suggests, losing sight of what the ratios need to be.



I only correct at meals because I worry about stacking


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## Shivles (Sep 22, 2016)

Owen said:


> Correcting is so hard to get right, better to be patient and delay next meal


With respect that's not easy with a toddler! And what if she just kept rising?


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## Shivles (Sep 22, 2016)

See these are the kind of things I feel the team should have already told me!


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## Northerner (Sep 22, 2016)

Shivles said:


> Yes a pump has been menu one but it's something I would consider a last resort. She's not even been diagnosed 2 months I don't want her attached to something and I'm extremely skeptical of the practicality with a toddler


Can I suggest getting in touch with the people at INPUT? http://www.inputdiabetes.org.uk/ - They are really helpful people and should be able to address your concerns about pumps and such young children  

Oh, and I would just like to say, even though it may not feel like it, you are doing a really good job! Diabetes, especially Type 1, has a huge learning curve and can be a whirlwind of information and confusion, as well as being emotionally charged on all sides. Things will get better!


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## Owen (Sep 22, 2016)

Shivles said:


> I only correct at meals because I worry about stacking


It is safer to carbohydrate free for that meal than correcting. Don't forget protein will also increase glucose. So perhaps a yogurt some cheese but no insulin. Her levels will fall. Then carbohydrate at the next meal with your bolus to cover.


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## Owen (Sep 22, 2016)

Shivles said:


> Yes I have done, I don't argue hypos need sugar


Try to be conservative with glucose, small amount retest, you can always add more.


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## Owen (Sep 22, 2016)

Northerner said:


> Can I suggest getting in touch with the people at INPUT? http://www.inputdiabetes.org.uk/ - They are really helpful people and should be able to address your concerns about pumps and such young children
> 
> Oh, and I would just like to say, even though it may not feel like it, you are doing a really good job! Diabetes, especially Type 1, has a huge learning curve and can be a whirlwind of information and confusion, as well as being emotionally charged on all sides. Things will get better!


Excellent job, I would be climbing the walls with anxiety.


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## Shivles (Sep 22, 2016)

Owen said:


> It is safer to carbohydrate free for that meal than correcting. Don't forget protein will also increase glucose. So perhaps a yogurt some cheese but no insulin. Her levels will fall. Then carbohydrate at the next meal with your bolus to cover.


That makes sense thank you.


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## Owen (Sep 22, 2016)

Shivles said:


> That makes sense thank you.


Once things balance out, you will get to know her tolerance. You are doing a fantastic job.


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## Shivles (Sep 22, 2016)

Dietitian asked me to email her the info I've looked at for low carb and kids which is encouraging. The team are making an appointment for me to meet up with them all together to discuss things


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## bilbie (Sep 22, 2016)

Hopefully someone will agree with just one slice of toast and an egg for breakfast, the two slices aren't working for you.
There are a few low carb dietitians in the UK, but they are few and far between, I wouldn't expect too much agreement. I'll find their links for you
Dr Trudi Deakin
http://www.xperthealth.org.uk/


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## Northerner (Sep 22, 2016)

Shivles said:


> Dietitian asked me to email her the info I've looked at for low carb and kids which is encouraging. The team are making an appointment for me to meet up with them all together to discuss things


Sounds good!  I hope you can all manage to find a good working solution - in particular, one that your LO is happy with!


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## Shivles (Sep 22, 2016)

bilbie said:


> Hopefully someone will agree with just one slice of toast and an egg for breakfast, the two slices aren't working for you.
> There are a few low carb dietitians in the UK, but they are few and far between, I wouldn't expect too much agreement. I'll find their links for you
> Dr Trudi Deakin
> http://www.xperthealth.org.uk/





bilbie said:


> Hopefully someone will agree with just one slice of toast and an egg for breakfast, the two slices aren't working for you.
> There are a few low carb dietitians in the UK, but they are few and far between, I wouldn't expect too much agreement. I'll find their links for you
> Dr Trudi Deakin
> http://www.xperthealth.org.uk/



Just trying her with eggy bread and some plain yogurt for lunch so will see how that goes


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## Shivles (Sep 22, 2016)

Wouldn't eat all the eggy bread so now on hypo watch! Anything else want to go wrong?!


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## everydayupsanddowns (Sep 22, 2016)

Sorry to hear of everything you have been goung through Shivles. Sounds absolutely horrific!

Have skim-read the thread and spotted that you seem to be lacking some info from your team. Wondered if these might help.

*Basal testing *There's a good write up here (though numbers are US so you need to divide by 18). https://mysugr.com/basal-rate-testing/ You would probably need to adapt it for someone so young... perhaps test every 2 yours if hourly is too much... perhaps use something no carb and low protein (sugar free jelly??) to make them more bearable?
*
Pumps in young children*
This blog post (and others) might help: https://theunderstudypancreas.com/2013/02/
This forum sticky has some thoughts in it: https://forum.diabetes.org.uk/board...rents-of-newly-diagnosed-children-pt-1.23853/ 
You might also be able to ask for tips here https://www.t1resources.uk/resources/item/parents-of-children-with-t1-facebook-group/


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## bilbie (Sep 22, 2016)

Kids, ya gota love em, just when ya think it's sorted..POW


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## Shivles (Sep 22, 2016)

Yeah lunch didn't go well!


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## Northerner (Sep 22, 2016)

Shivles said:


> Yeah lunch didn't go well!


How long prior to eating did you give the injection? Do you expect her levels to fall back again by the time of her next meal? I used to have the same result and in my case I was able to largely overcome that post-meal spike by injecting at least 15 minutes before eating - I was getting the bolus dose correct, but it wasn't starting to peak until after the food had peaked. I appreciate, however, that injecting much before eating in one so young could be a risky proposition if she decides she's not hungry! I know that some parents inject after eating when they can be more confident of how much has been eaten, but that can obviously lead to these post meal spikes whilst the insulin gets to work. An alternative is to inject half a dose before and then the rest after eating, but that means more injections (something that a pump helps with - no extra injections, and you can set it to automatically release the bolus over an extended period if it helps). We've come a long way with these things, but it's still not easy!


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## bilbie (Sep 22, 2016)

It wouldn't hurt to bring up at the meeting about splitting the levemir to before bed and when she wakes up. They may think it will help. also there seems to be a lot of bolus compared to the amount of basal? 50/50, 60/40 are targets I've seen say work everyone is different
so far today it's 1.5U basal and 3.5U bolus?

splitting is supported by Dr B, who even splits tresiba and also supported by DAFNE UK
http://www.dafne.uk.com/uploads/223/documents/PU04.009, Version 1 - September 2013 - Insulin statement.pdf


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## Shivles (Sep 22, 2016)

Northerner said:


> How long prior to eating did you give the injection? Do you expect her levels to fall back again by the time of her next meal? I used to have the same result and in my case I was able to largely overcome that post-meal spike by injecting at least 15 minutes before eating - I was getting the bolus dose correct, but it wasn't starting to peak until after the food had peaked. I appreciate, however, that injecting much before eating in one so young could be a risky proposition if she decides she's not hungry! I know that some parents inject after eating when they can be more confident of how much has been eaten, but that can obviously lead to these post meal spikes whilst the insulin gets to work. An alternative is to inject half a dose before and then the rest after eating, but that means more injections (something that a pump helps with - no extra injections, and you can set it to automatically release the bolus over an extended period if it helps). We've come a long way with these things, but it's still not easy!



Since she was 4.6 I only give it 10 minutes where normally I would wait longer, didnt want her going hypo before the meal

Usually she would come down again by tea time but the way this week is going I've no idea! 

Split doses might be something we will have to try


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## Shivles (Sep 22, 2016)

bilbie said:


> It wouldn't hurt to bring up at the meeting about splitting the levemir to before bed and when she wakes up. They may think it will help.
> This is supported by Dr B, who even splits tresiba and also supported by DAFNE UK
> http://www.dafne.uk.com/uploads/223/documents/PU04.009, Version 1 - September 2013 - Insulin statement.pdf


Unless she improves by tea time I'll be giving them a ring so will mention it


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## bilbie (Sep 22, 2016)

another reason to split is because of the small dose, smaller doses metabolise/absorbed into the system, quicker than larger doses, ask Dr I'm just guessing from what I've read with others
http://www.diabetes-book.com/laws-small-numbers/


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## Northerner (Sep 22, 2016)

Shivles said:


> Since she was 4.6 I only give it 10 minutes where normally I would wait longer, didnt want her going hypo before the meal
> 
> Usually she would come down again by tea time but the way this week is going I've no idea!
> 
> Split doses might be something we will have to try


Just what I would have done with the bolus!  Might be tricky splitting such a tiny dose though. By the way, the basal/bolus split percentages are only rough guidelines so the fact she is quite different to the 60/40 isn't unusual - I was never anywhere near that.


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## Shivles (Sep 22, 2016)

Northerner said:


> By the way, the basal/bolus split percentages are only rough guidelines so the fact she is quite different to the 60/40 isn't unusual - I was never anywhere near that.


What does that mean?


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## Pumper_Sue (Sep 22, 2016)

bilbie said:


> I'm much more relaxed talking about adults. Even though if I had a T1 kid, I wouldn't use my keto diet. I don't see the need for a T1 kid to be in ketosis, but it would be lower carb, higher proteins and fats. With what I currently think. I would have a pump and half basal dose with tresiba and half with the pump. The reason is that when just on a pump and a site fails, ketones and high BG happens so quickly. Half pump still leaves a lot of flexibility for basal rates and has a half dose long acting to minimise ketones and BG rise when site fails.
> I may change my mind about pumps if anything comes from pumps causing long term problems with site damage, as opposed to injections.


You are frighteningly dangerous in your idea of pump management and insulin usage


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## Northerner (Sep 22, 2016)

Shivles said:


> What does that mean?


@bilbie mentioned that she takes a relatively large amount of bolus insulin compared to her basal. Usually, when people are first put on basal/bolus they are given a total daily dose which is 60% bolus and 40% basal (so 60% novorapid with meals and 40% levemir). I was more like 90% bolus and only 10% basal!


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## bilbie (Sep 22, 2016)

Pumper_Sue said:


> You are frighteningly dangerous in your idea of pump management and insulin usage


I guess it's lucky I don't have a t1 kid then and it was an if I did scenario There are people using both pumps and separate basal injections, it isn't unique. A half dose of basal from both seems the best of both worlds to me, for the stated reasons.


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## Pumper_Sue (Sep 22, 2016)

bilbie said:


> I guess it's lucky I don't have a t1 kid then and it was an if I did scenario There are people using both pumps and separate basal injections, it isn't unique. A half dose of basal from both seems the best of both worlds to me, for the stated reasons.


As you are type 2 don't use insulin and were banned from another forum for being an authority on insulin with no knowledge why have you started touting your knowledge! on this forum?


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## Sally71 (Sep 22, 2016)

bilbie said:


> A half dose of basal from both seems the best of both worlds to me, for the stated reasons.


How on earth would you basal test then, you wouldn't know which one needed changing!  DKA isn't a problem with a pump if you keep a close eye on your blood sugars, you can spot that something is going wrong and do something about it before you get to danger levels.


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## bilbie (Sep 22, 2016)

Pumper_Sue said:


> As you are type 2 don't use insulin and were banned from another forum for being an authority on insulin with no knowledge why have you started touting your knowledge! on this forum?



you are incorrect but no matter. 

obviously I'm not directing any advice about insulin to the OP because OP isn't using a pump. In the drift of the thread I gave my thoughts on a pump and basal rates


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## bilbie (Sep 22, 2016)

Sally71 said:


> How on earth would you basal test then, you wouldn't know which one needed changing!  DKA isn't a problem with a pump if you keep a close eye on your blood sugars, you can spot that something is going wrong and do something about it before you get to danger levels.


I hope this isn't getting too OT and a separate post would be better but.
How they are doing it is a set basal injection and then adjusting the pump for basal and bolus rates, I'm not suggesting it to anyone, but is something I would look at and discuss with my Dr if I was in such a position on a pump


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## Owen (Sep 22, 2016)

Shivles said:


> Unless she improves by tea time I'll be giving them a ring so will mention it


Up from my sleep now, how are you both doing. What did you have for lunch


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## Shivles (Sep 22, 2016)

Owen said:


> Up from my sleep now, how are you both doing. What did you have for lunch


I've attached the latest numbers. She had a slice of eggy bread (seeded) fried in some butter and 100g plain Greek yogurt, shot from 4.6 to 13.5. She came down within range now has gone up a bit again


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## Owen (Sep 22, 2016)

Bread


Shivles said:


> I've attached the latest numbers. She had a slice of eggy bread (seeded) fried in some butter and 100g plain Greek yogurt, shot from 4.6 to 13.5. She came down within range now has gone up a bit again[/QUOTE
> 
> Bread is the culprit, the yogurt and butter probably disrupt the glucose absorption, so you may see medium term high bg. 13.5 is not the end of the world. Try some lizis granola instead of the bread, it does taste nice with yogurt


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## Shivles (Sep 22, 2016)

I know but they've told me not to make changes until I see the consultant, apparently the idea of cutting out bread is ludicrous to the dietitian


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## Owen (Sep 22, 2016)

Owen said:


> Bread


How did I do that


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## Owen (Sep 22, 2016)

Shivles said:


> I know but they've told me not to make changes until I see the consultant, apparently the idea of cutting out bread is ludicrous to the dietitian


Give half a slice, that would be appropriate given the circumstances. Is the bread burgen


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## Shivles (Sep 22, 2016)

Owen said:


> Give half a slice, that would be appropriate given the circumstances. Is the bread burgen


It's tesco own multi seed, the mini loaf so small slices (33g)


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## Shivles (Sep 22, 2016)

She's at 9.1 and going to try fish fingers and sweetcorn for tea, 16.15 carbs, insulin calculated at 0.8 units so rounded up to 1 as per DSNs rule... I've give it about 20 minutes before she will start eating so will see how that goes!


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## Martin Canty (Sep 22, 2016)

Shivles said:


> . She had a slice of eggy bread (seeded)


It so sounds like there is an issue with the bread..... Particularly following your posts for the last week or so.... Have you tried the alternates (Bergen, LIDI or whatever)


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## Shivles (Sep 22, 2016)

Martin Canty said:


> It so sounds like there is an issue with the bread..... Particularly following your posts for the last week or so.... Have you tried the alternates (Bergen, LIDI or whatever)



I've not because of the expense, she's the only one not on white bread in the house, after this I think I will try it though


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## Martin Canty (Sep 22, 2016)

Shivles said:


> fish fingers and sweetcorn


Please don't think that I'm trying to tell you what to feed your daughter.
Fish Fingers.... A lot of breading, perhaps home made with breading from an alternate flour?
Sweetcorn, though I love sweetcorn it's just that the GI is so high (55), would something like beans be an acceptable alternate (with any luck not incurring the wrath of your dietician). I also see many canned vegetables & beans having sugar as an ingredient... My freezer is full of beans & pulses that I cooked from dried & now only have them as a minor component of my meals.


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## Shivles (Sep 22, 2016)

Martin Canty said:


> Please don't think that I'm trying to tell you what to feed your daughter.
> Fish Fingers.... A lot of breading, perhaps home made with breading from an alternate flour?
> Sweetcorn, though I love sweetcorn it's just that the GI is so high (55), would something like beans be an acceptable alternate (with any luck not incurring the wrath of your dietician). I also see many canned vegetables & beans having sugar as an ingredient... My freezer is full of beans & pulses that I cooked from dried & now only have them as a minor component of my meals.


I'm just working with what I have in for now. I don't think she would eat plain beans lol she's not keen on a lot of veg to be honest! Peas and sweetcorn I get away with everything else so far has been rejected 

Yeah if I make those changes I think it becomes a low carb meal lol


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## bilbie (Sep 22, 2016)

Hide everything under LC tomato sauce  Tomato sauce was a savour with my kids


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## Martin Canty (Sep 22, 2016)

Shivles said:


> Yeah if I make those changes I think it becomes a low carb meal lol


Darn, you caught me......

I really hear your pain & just hope you can get this under control for both of your sakes.....


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## Owen (Sep 22, 2016)

Shivles said:


> I've not because of the expense, she's the only one not on white bread in the house, after this I think I will try it though


I am very sensitive to bread, I go to Tesco, Sainsbury etc late in the day get my burgen cheap divide into freezer bags, 1 slice per bag, reuse them to save money. Sweet corn just watch portion size. Yesit is high GI, I believe not as bad on GL though, will check and come back.


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## Owen (Sep 22, 2016)

Sweetcorn does light up green on GL, this means that although high GI does need quantity to cause issues. I would not get too excited by the breadcrumbs on the fishfingers especially as you have calculated bolus to cover.


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## Shivles (Sep 22, 2016)

It was 3 fish fingers and 25g of sweetcorn so we will see! In hindsight probably should have put butter on the sweetcorn but hopefully she will be okay with this meal


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## Owen (Sep 22, 2016)

Shivles said:


> It was 3 fish fingers and 25g of sweetcorn so we will see! In hindsight probably should have put butter on the sweetcorn but hopefully she will be okay with this meal


I think you should be okay. Keep a diary of food for your diabetic team.


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## Shivles (Sep 22, 2016)

I log everything in mysugr already 

I'm a bit obsessive did anyone notice?


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## Owen (Sep 22, 2016)

Shivles said:


> I log everything in mysugr already
> 
> I'm a bit obsessive did anyone notice?


You need to get some down time as well. Make sure you get away from all of this for at least an hour a day.


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## Shivles (Sep 22, 2016)

Owen said:


> You need to get some down time as well. Make sure you get away from all of this for at least an hour a day.


In my dreams! I'm getting no help I have to think about this 24/7, is probably half my issue


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## Owen (Sep 22, 2016)

Very much so, but you cannot stay objective, unless you get some space. Try 15 minutes, then build towards an hour. You will be amazed at how this will help you.


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## Pumper_Sue (Sep 22, 2016)

bilbie said:


> you are incorrect but no matter.
> 
> obviously I'm not directing any advice about insulin to the OP because OP isn't using a pump. In the drift of the thread I gave my thoughts on a pump and basal rates


Well you are not on insulin and you were banned from another forum, your thoughts were best kept to yourself as I again say they are dangerous.


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## Shivles (Sep 22, 2016)

Owen said:


> Very much so, but you cannot stay objective, unless you get some space. Try 15 minutes, then build towards an hour. You will be amazed at how this will help you.



Dad won't even check her sugars, it's hard for me to get time away


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## Owen (Sep 22, 2016)

Hi





Shivles said:


> Dad won't even check her sugars, it's hard for me to get time away


For a stroll to the park, visit a friend or family. When I am called out to paediatric emergencies, I always get the parents to do some tasks. You are emotionally attached without any respite. This will end with irrational thinking. Please find someone and sometime to escape.


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## Pumper_Sue (Sep 22, 2016)

Shivles said:


> Dad won't even check her sugars, it's hard for me to get time away


Perhaps have a sit down with hubby and find out what his feelings are. It's only a guess but I suspect he has a massive guilt complex because he has got it in his head that he gave it to his daughter, so his way of coping is to shut the door so to speak.


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## Owen (Sep 22, 2016)

Pumper_Sue said:


> Perhaps have a sit down with hubby and find out what his feelings are. It's only a guess but I suspect he has a massive guilt complex because he has got it in his head that he gave it to his daughter, so his way of coping is to shut the door so to speak.


You beat me to it.


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## Shivles (Sep 23, 2016)

I know that's how he feels and I've tried to reassure him it's a gene combination and neither of our faults... don't really know how else to reach out to him over it. 

Last night's graph, after tea and overnight, fish fingers and sweetcorn is an issue too it seems.I've just give scrambled egg this morning and no insulin as she's in the 5s and I can't safely give it


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## Owen (Sep 23, 2016)

Not horrendous, remember its going to take a while to get it right.

If it is genetic, there is nothing he has done wrong. If he wants to chat, I have two surviving diabetics plus a goat of others no longer here. It's just a lottery.


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## Pumper_Sue (Sep 23, 2016)

Shivles said:


> I know that's how he feels and I've tried to reassure him it's a gene combination and neither of our faults... don't really know how else to reach out to him over it.


Then you need to speak to someone to get him the help he needs. I speak from experience, being a 4th generation type 1 on my fathers side of the family he decided it was all his fault so his way of coping was to ignore me completely, this started at the age of 4 1/2 for me and went on until he died aged 82 on this day 2 years ago. All I can say is it wasn't good for him or me.


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## bilbie (Sep 24, 2016)

How did the Friday meeting go? I hope you came away with a workable plan for LO


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## Shivles (Sep 25, 2016)

The team reluctantly agreed to try her on a higher basal but warned me to check her at 3am to make sure she doesn't go too low (obviously why they didn't want to try it, didn't want to take the risk)

She stayed with grandma and grandad Friday night so everything was a bit off Saturday day time, tea seemed to go well but we did dip a bit too low at 3am, this morning I put down to getting up an hour and a half later than she normally does.

If 1.5 units of levemir isn't enough but 2 is too much what do I do?


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## Owen (Sep 25, 2016)

Not ignoring, just thinking.


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## Radders (Sep 25, 2016)

Shivles said:


> The team reluctantly agreed to try her on a higher basal but warned me to check her at 3am to make sure she doesn't go too low (obviously why they didn't want to try it, didn't want to take the risk).
> 
> If 1.5 units of levemir isn't enough but 2 is too much what do I do?



Would splitting the dose help? That way you could alter the timing of the low or high reading so it's during the day when you can compensate by tweaking the bolus?

I realise that basal and bolus are meant to do different things, but I have found I sometimes get on better by treating them as a partnership with the aim of getting numbers where I want them! 

I know you don't want to go for a pump but you can fine tune the doses with a pump: my basal can be tuned to .01 increments per hour.


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## Shivles (Sep 25, 2016)

Radders said:


> Would splitting the dose help? That way you could alter the timing of the low or high reading so it's during the day when you can compensate by tweaking the bolus?
> 
> I realise that basal and bolus are meant to do different things, but I have found I sometimes get on better by treating them as a partnership with the aim of getting numbers where I want them!
> 
> I know you don't want to go for a pump but you can fine tune the doses with a pump: my basal can be tuned to .01 increments per hour.


I'll be asking about splitting the dose but I'm unsure how that would help, I don't really understand lol, dad's on novomix so we don't have a clue


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## Sally71 (Sep 25, 2016)

Shivles said:


> If 1.5 units of levemir isn't enough but 2 is too much what do I do?



GO ON A PUMP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sorry to keep banging on about it, but honestly, on a pump if your child is dipping at 3am then you can reduce the basal from 1am - 5am only just to smooth out that dip.  With small children a difference of just 0.02 units per hour can make all the difference between them going hypo or not.  You absolutely can not ever adjust one dose per day of Levemir like that!

I know you said pump is a last resort for you, but are you not desperate enough already?  Could you not ask to meet some children with pumps and their families so that you can see what you are really dealing with?  Or ask to try one for 3 months and if you really don't get on with it you can go back to pens.  Pumps are pretty tough, it's unlikely that even the most boisterous toddler could damage it.  If you don't like the idea of her being attached to it all the time, just tell her that it's her best friend now and it's making her feel better (and it's instead of needles every day), she'll pretty soon get used to it and will hardly notice that it's there.

I"m also sorry to hear that your hubby isn't helping; my mum is also T1 and yes I think she too briefly felt very guilty when my daughter was diagnosed.  But she knows deep down that it's nobody's fault really.  She can't help much with the day to day management as she knows very little about pumps, but I think my daughter likes talking to her about it, Grandma is the only other person in the family who really knows what it FEELS like to have diabetes!  My hubby doesn't help much, he knows how to do a basic meal bolus and how to manage a hypo, other than that he leaves all the complicated stuff to me.  But it's nice to have someone to bounce ideas off occasionally!  You need a break occasionally too, good luck


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## Radders (Sep 25, 2016)

Shivles said:


> I'll be asking about splitting the dose but I'm unsure how that would help, I don't really understand lol, dad's on novomix so we don't have a clue


It's about the timing of Levermir's peak action. If it's peaking in the middle of the night, switching the dose to the morning might work but might also fall too short to cover the morning rise in levels. By splitting it, it can sometimes smooth out the action. I was on Levermir before going on the pump and I found that splitting it helped me.


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## Owen (Sep 25, 2016)

Funkypumpers.com


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## Shivles (Sep 25, 2016)

I do wish everyone would stop pushing a pump, I've said several times I don't want her on one yet. I appreciate they work well for you all but please respect my decision as a parent that it isnt the right time for my LO


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## stephknits (Sep 25, 2016)

The Levemir last around 18 hours, so is usually split to try to give a 24 hour coverage.  Although the doses are very small, I think this may be of benefit to you. That way, she is less likely to go hypo in the night and more likely not to see high bs when no carbs eaten throughout the day.  Unfortunately on pens, it is a blunt tool, but splitting would at least give you more flexibility, it has certainly helped me 

I think people keep suggesting a pump because it answers many of the things you are frustrated with and they are just trying to be as helpful as possible.  I can understand your feelings about them, though - many adults feel the same way.


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## Sally71 (Sep 25, 2016)

Apologies, I won't mention pumps again.  As stephknits says, I was only trying to help, and it seems to me that it answers many of the questions you have.  But you have your reasons not to choose one, sorry 

Oh and I do genuinely hope that someone else can help you find a solution that works for you and your little one


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## Shivles (Sep 25, 2016)

Breakfast was a write off, thought I'd give the toast another try with the increased basal. Lunch seemed to go pretty well, her carbs for lunch were 2 cream crackers with pate, she also had some cheese and olives. In two minds about tea now, I'm making bolognaise which I eat on its own with cheese, wondering if I should do the same with her or give her a little pasta


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## Owen (Sep 25, 2016)

Shivles said:


> Breakfast was a write off, thought I'd give the toast another try with the increased basal. Lunch seemed to go pretty well, her carbs for lunch were 2 cream crackers with pate, she also had some cheese and olives. In two minds about tea now, I'm making bolognaise which I eat on its own with cheese, wondering if I should do the same with her or give her a little pasta


I find with bread. I have to either increase bolus or avoid. The screen shots are looking better. Stop punishing yourself, you're doing an amazing job.
I just bought a fridge pack of beans,  I can weigh exact amounts.


----------



## Owen (Sep 25, 2016)

Sorry forgot to add. She may have different tolerances st different parts of the day, I know its a mind game this diabetes. With time you will know more than anyone else.


----------



## Shivles (Sep 25, 2016)

Right tea was really odd! Decided to try out pasta, either she handled it perfectly or its not been absorbed yet


----------



## Owen (Sep 25, 2016)

Shivles said:


> Right tea was really odd! Decided to try out pasta, either she handled it perfectly or its not been absorbed yet


With the reading at 4.7, I would have been tempted to only go for 1u, but you're doing fine. Nothing really worry about. 

Pat yourself on the back. Try not to get over zealous about tight control, this can be refined with time.

How do you think you are doing, coping?


----------



## Shivles (Sep 26, 2016)

I'm okay I guess, pretty stressed and confused but that's what I expected


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## Shivles (Sep 26, 2016)

No idea at all what happened last night, seems like 2 units of levemir is too much though I'll only give 1.5 tonight


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## bilbie (Sep 26, 2016)

I think you are getting it. Working within the nurses range, looking at chart and making decisions 
When a tiny 5g of carb correction goes from 3.8 to 11.5, 3 hours later with a high basal rate dropping it back to 3.2. It makes banging your head against a wall easier


----------



## Shivles (Sep 26, 2016)

bilbie said:


> I think you are getting it. Working within the nurses range, looking at chart and making decisions
> When a tiny 5g of carb correction goes from 3.8 to 11.5, 3 hours later with a high basal rate dropping it back to 3.2. It makes banging your head against a wall easier


I think most of that rise is 'pizza effect' from her pasta bolognaise, used fatty mince and she had cheese on top. I'd expect the 5g to raise her about 3mmol, it can't all be off one cola bottle!


----------



## Shivles (Sep 26, 2016)

That plunge is worrying though! Might keep it at 2 units and split it..


----------



## bilbie (Sep 26, 2016)

I would ring the nurse and ask, or has the nurse said about splitting? Your team are going to be your best friends this year. You want to keep them onside. Even splitting may need a smaller total.


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## Shivles (Sep 26, 2016)

No they haven't mentioned it but it's been said a few times on here and on another forum


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## bilbie (Sep 26, 2016)

It is supported by DAFNE to split it, but I would still speak to nurse. The last thing you need is to get nurse's nose out of joint. The nurse may suggest 1U at night and 0.5U in the morning?
http://www.dafne.uk.com/uploads/223...on 1 - September 2013 - Insulin statement.pdf


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## Shivles (Sep 26, 2016)

This seems to me the levemir runs out by lunch?


----------



## Owen (Sep 26, 2016)

What time do you give the levemir


----------



## Shivles (Sep 26, 2016)

Owen said:


> What time do you give the levemir


7pm


----------



## Owen (Sep 26, 2016)

I fear that you are so desperate to do the right thing that too many changes may obscure your long term goals.

Right now you have done a remarkable job and fail to give yourself due credit. Your daughter is at relatively low risk from a medical emergency, due to your diligence. You are goal keeping hypo's and keeping her away from the DKA zone. Well done.

Now, you could try bringing the levemir forwards, say half an hour, monitor then reassess. This must be the only change to give a credible response. Then repeat if necessary. Give it a few days before making any additional changes, this will help to know that the result is reliable.

These have be what you want and involve your team with your reasons, evidence and outcomes.

What a wonderful mother you are!!


----------



## Shivles (Sep 26, 2016)

Owen said:


> I fear that you are so desperate to do the right thing that too many changes may obscure your long term goals.
> 
> Right now you have done a remarkable job and fail to give yourself due credit. Your daughter is at relatively low risk from a medical emergency, due to your diligence. You are goal keeping hypo's and keeping her away from the DKA zone. Well done.
> 
> ...


Thank you  

I think in fact I'm going to leave the dosing as it is for tonight so I can see if the same thing happens, I am feeling the basal isn't lasting 24hrs though


----------



## Owen (Sep 26, 2016)

Shivles said:


> Thank you
> 
> I think in fact I'm going to leave the dosing as it is for tonight so I can see if the same thing happens, I am feeling the basal isn't lasting 24hrs though





Shivles said:


> Thank you
> 
> I think in fact I'm going to leave the dosing as it is for tonight so I can see if the same thing happens, I am feeling the basal isn't lasting 24hrs though


Sounds like a good plan, I give two more days to give a fair balance.


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## Shivles (Sep 27, 2016)

So it seems pasta causes a late rise with her which is interesting, no night hypo though which is good!


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## SB2015 (Sep 27, 2016)

Hi Shivies

First to say you are doing well and managing a complicated condition. Well done.

Pasta quite often gives a delayed rise.  One thing I found useful was to split my bolus dose for pasta (and this was when I was on tiny doses) I did a bit before the meal and another 1 hour later.  It did mean another injection, and an alarm set to remind me.

With respect to making changes, one thing you could try, although this may not be popular with LO, have the same meals each day for a week, for which you know the carbs exactly.  This way you can sort out the ratios with something staying the same.

With regard to your husbands feelings, have you discussed this with the DSN?  You could do with some support and they may be able to get him support as well.


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## Shivles (Sep 27, 2016)

I might try a week of same meals, shes not old enough to care yet haha.

I'm trying just to encourage him to get involved but as it's frustrating I usually just give up, his own management isn't great. I want to help him too without nagging but I feel like because he's got away with it for so long now he's kind of 'it won't happen to me' which translates to 'oh well never did me any harm' when it comes to LO. He feels like I'm shutting him out because I'm doing all this but if I don't do it who will? He disagrees that 11mmol isn't too high a blood sugar for LO, I think he thinks I'm neurotic


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## Owen (Sep 27, 2016)

Shivles said:


> I might try a week of same meals, shes not old enough to care yet haha.
> 
> I'm trying just to encourage him to get involved but as it's frustrating I usually just give up, his own management isn't great. I want to help him too without nagging but I feel like because he's got away with it for so long now he's kind of 'it won't happen to me' which translates to 'oh well never did me any harm' when it comes to LO. He feels like I'm shutting him out because I'm doing all this but if I don't do it who will? He disagrees that 11mmol isn't too high a blood sugar for LO, I think he thinks I'm neurotic


Passion can sometimes be misunderstood a as obsession. Try not to use your LO to prove it influence your OH, he will see things in the long run through results.
Perhaps reduce the pasta portion by a tiny amount, say 3g. This is easier to tweak than the insulin due to the small amounts. 

What is being eaten with the pasta, is the pasta ready cooked, if not cooking the pasta  aldente will change the properties 

11mmol is a little high, but not worth upsetting yourself. Tiny changes will bring it down.


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## SB2015 (Sep 27, 2016)

Your husband may have got away with it so far, but the long term effects of higher BG are proven.
The technologies available are so much better now and it is unusual for people to be on two injections a day, which about 10 years ago was all that was available.  The basal/ bolus regime which you are working on gives much better control.  You are definitely in huge right track for LO.  It may be that your attention to detail will prompt your husband to reconsider his own care.


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## Shivles (Sep 27, 2016)

SB2015 said:


> Your husband may have got away with it so far, but the long term effects of higher BG are proven.
> The technologies available are so much better now and it is unusual for people to be on two injections a day, which about 10 years ago was all that was available.  The basal/ bolus regime which you are working on gives much better control.  You are definitely in huge right track for LO.  It may be that your attention to detail will prompt your husband to reconsider his own care.



He has said he can see how he'd benefit from the more modern approach but hes extremely nervous to change it as from what I gather he's been on novomix for a long time, he'd have to check his blood which I've seen him do once in 3 years. .. he's in a bit of denial


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## Owen (Sep 27, 2016)

Shivles said:


> He has said he can see how he'd benefit from the more modern approach but hes extremely nervous to change it as from what I gather he's been on novomix for a long time, he'd have to check his blood which I've seen him do once in 3 years. .. he's in a bit of denial


Softly softly catchy monkey


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## Redkite (Oct 1, 2016)

@Shivles I haven't read all the replies on this thread, but I'm a bit worried about some of the advice you've been getting on here.  I did post quite a long reply on your other thread about why low carbing in children is NOT a good idea.  She is only 16 months old and her brain is developing at its fastest rate, she's growing and changing rapidly, please don't disregard medical advice on diet in favour of all these evangelical advocates of low carb - it could be harmful to her development if you exclude a major food group.

There are various techniques for handling spikes in BG after eating particular foods, for example giving the insulin a few minutes ahead of eating something mid/high GI like breads and cereals.  Insulin given subcutaneously takes longer to be absorbed and "get working" than insulin produced by a healthy pancreas straight into the bloodstream, so when you eat high GI carbs, the glucose from digesting them can reach the bloodstream before the insulin does.  It can be as simple as a timing issue.

Unless your daughter is coeliac, please don't exclude whole grains - your dietician is absolutely right that these are a valuable source of B vitamins.  As for the old "what did hunter gatherers eat" argument, they stripped the seeds and grains out of wild grasses, which their descendants later cultivated.  You only have to look at our teeth to see that humans evolved as omnivores.


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## Shivles (Oct 1, 2016)

Redkite said:


> @Shivles I haven't read all the replies on this thread, but I'm a bit worried about some of the advice you've been getting on here.  I did post quite a long reply on your other thread about why low carbing in children is NOT a good idea.  She is only 16 months old and her brain is developing at its fastest rate, she's growing and changing rapidly, please don't disregard medical advice on diet in favour of all these evangelical advocates of low carb - it could be harmful to her development if you exclude a major food group.
> 
> There are various techniques for handling spikes in BG after eating particular foods, for example giving the insulin a few minutes ahead of eating something mid/high GI like breads and cereals.  Insulin given subcutaneously takes longer to be absorbed and "get working" than insulin produced by a healthy pancreas straight into the bloodstream, so when you eat high GI carbs, the glucose from digesting them can reach the bloodstream before the insulin does.  It can be as simple as a timing issue.
> 
> Unless your daughter is coeliac, please don't exclude whole grains - your dietician is absolutely right that these are a valuable source of B vitamins.  As for the old "what did hunter gatherers eat" argument, they stripped the seeds and grains out of wild grasses, which their descendants later cultivated.  You only have to look at our teeth to see that humans evolved as omnivores.


There's lots of evidence to suggest the opposite however I don't want to have an argument about it. Either way I wouldn't make a decision just based on strangers from the Internet, I research everything to death, thank you for the concern


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## Matt Cycle (Oct 1, 2016)

Shivles said:


> He has said he can see how he'd benefit from the more modern approach but hes extremely nervous to change it as from what I gather he's been on novomix for a long time, he'd have to check his blood which I've seen him do once in 3 years. .. he's in a bit of denial



Hi there.  I can understand not wanting to change insulin.  You get into a routine which you can manage and are reluctant to change - I'm the same.  But to clarify I wouldn't call basal/bolus modern as it has been around a long time now.  I've been on it for the last 29 years of my 30 years of T1 diabetes.  In that time my fast acting has changed once and my long acting twice.


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## Shivles (Oct 1, 2016)

Matt Cycle said:


> Hi there.  I can understand not wanting to change insulin.  You get into a routine which you can manage and are reluctant to change - I'm the same.  But to clarify I wouldn't call basal/bolus modern as it has been around a long time now.  I've been on it for the last 29 years of my 30 years of T1 diabetes.  In that time my fast acting has changed once and my long acting twice.


That's odd, he's been diagnosed 26 years and was offered it only about 7 years ago he said! Wonder why his team give him novomix then


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## Matt Cycle (Oct 1, 2016)

Shivles said:


> That's odd, he's been diagnosed 26 years and was offered it only about 7 years ago he said! Wonder why his team give him novomix then



Basal/bolus was introduced in the mid 80's and looking back I was lucky in that the clinic I was at was fairly progressive and they offered it to me in 1987 which I took.  I would guess though it's a reluctance on the patients part to change and on the medical side if the patient isn't complaining/is doing 'alright' then things just carry on.  In my experience it's only when you have an issue or get a new consultant / doctor they start to discuss these things.

Plenty of people on here who have had diabetes a long time didn't change until the 90's/2000's but some like your partner are still on mixed.  If it works for the person then great there is no need to change but in my experience it is uncommon.


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## Shivles (Oct 1, 2016)

Matt Cycle said:


> Basal/bolus was introduced in the mid 80's and looking back I was lucky in that the clinic I was at was fairly progressive and they offered it to me in 1987 which I took.  I would guess though it's a reluctance on the patients part to change and on the medical side if the patient isn't complaining/is doing 'alright' then things just carry on.  In my experience it's only when you have an issue or get a new consultant / doctor they start to discuss these things.
> 
> Plenty of people on here who have had diabetes a long time didn't change until the 90's/2000's but some like your partner are still on mixed.  If it works for the person then great there is no need to change but in my experience it is uncommon.


He's finding it's not working so well recently and some days has 3 injections instead of the 2 he's supposed to, he's interested in swapping to basal/bolus but obviously it's a daunting prospect, he said he feels he'd have to take a week off work so he could properly get to grips with it which I appreciate, I didn't want to leave the house with LO in the early days when I didn't know how different things would affect her


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## Owen (Oct 1, 2016)

Shivles said:


> He's finding it's not working so well recently and some days has 3 injections instead of the 2 he's supposed to, he's interested in swapping to basal/bolus but obviously it's a daunting prospect, he said he feels he'd have to take a week off work so he could properly get to grips with it which I appreciate, I didn't want to leave the house with LO in the early days when I didn't know how different things would affect her


I thought the same about having to take time off to adjust. It turned out to be a bit of a non event. I run my basal so that my readings hit the high fives to mid sixes. I worked my bolus up slowly to allow me to drive without the fear of hypos. The freedom I have now is life changing.


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## Shivles (Oct 1, 2016)

Owen said:


> I thought the same about having to take time off to adjust. It turned out to be a bit of a non event. I run my basal so that my readings hit the high fives to mid sixes. I worked my bolus up slowly to allow me to drive without the fear of hypos. The freedom I have now is life changing.


Good to hear the transition can be smooth! How did you work out what doses you needed?


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## Owen (Oct 1, 2016)

I started off with a low dose of basal, whilst carefully restricting carbohydrates, once this was level, I then started adding carbohydrate and bolus in small levels until I found my sensitivity. This is how it worked for me and not necessarily the recommended way of doing it. The highest reading since doing this was 8.4 and the lowest 4.7. I drive a lot and work nights so if I go below 5 I will eat a Satsuma. I am now much braver and even had my first bit of cheesecake in over 3 years, covered with bolus, lovely. I never feel annoyed with injections, as for a 10 second inconvenience, I have my life back. I bought a molle pouch to keep my insulin, blood testing kit and my hypo kit, so that I always have everything to hand.


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