# The family living with type 1 diabetes



## Northerner

Like a lot of families with young children, Danielle Sellers and her partner Paul Burnett face a daily battle to get their children to sit down, eat breakfast and get out of the door on time.

But Danielle's morning comes with some added mental arithmetic.

Not only does she have type 1 diabetes but so do five-year-old James and three-year-old Elizabeth.

A Mum, a mathematician and a nurse all rolled into one, she's on call 24 hours a day to make sure that her own blood sugar levels and those of her children don't get dangerously out of control.

http://www.bbc.co.uk/science/0/20678536


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## StephenM

Sorry but I think this woman has a form of OCD as ten tests every day are not necessary. The 3:00 a.m. ones disturb everyone and should only be done if there is reason for concern such as a worryingly low result before bed or the child has been vomiting.


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## Northerner

StephenM said:


> Sorry but I think this woman has a form of OCD as ten tests every day are not necessary. The 3:00 a.m. ones disturb everyone and should only be done if there is reason for concern such as a worryingly low result before bed or the child has been vomiting.



I disagree. I can do 8 tests a day quite often, and I'm a fully-grown adult. With such young children and all the particular problems that a growing child represents I don't think 10 tests is unreasonable at all. And I totally agree with the 3am tests, much better to be safe than eternally sorry for the sake of a little disruption.


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## Riri

I agree Northerner. I have a pump, carb count and drive places daily so those tests, some of them imposed by DVLA rules, can quite often mean I'm testing over 12 times daily. I do a 3am test every night too - I know others who pump do al well It's just a test on my way back from the loo and takes 2 mins - but gives me peace of mind that my BSs are ok and the pump is still attached ok and working. Whatever works for each of us I say.


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## Akasha

Admittitled, I try to avoid nighttime checks where possible. But mostly cause I get grumpy with disrupted sleep.. 

I'm a little concerned with her math..



> "So, two Weetabix is 25.7 grams of carbohydrate. With that they are having 100ml milk, which is five grams of carbohydrate. So that's 35.7 - if they eat it all. It's difficult with Weetabix because it absorbs all the milk.


25.7 + 5 is 30.7 unless I'm missing something..? 

Either way, It can't be easy for her. It makes me sad to see such young children with Diabetes


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## HOBIE

I test a lot & i bet i could get blood out of certain fingers without a sharp   Was in hosp & done 50 test strips in less than 3 days (sore)


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## Northerner

Akasha said:


> Admittitled, I try to avoid nighttime checks where possible. But mostly cause I get grumpy with disrupted sleep..
> 
> I'm a little concerned with her math..
> 
> 
> 25.7 + 5 is 30.7 unless I'm missing something..?
> 
> Either way, It can't be easy for her. It makes me sad to see such young children with Diabetes



Must be a typo, I reckon!


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## Copepod

Concerned to see photo of blood drop obtained from pad of big toe in photo 1/11 - presumbly 3 year old Elizabeth, rather than 5 year old James, as hand has nail varnish. 

I'm also surprised that 10 tests per day per person is quoted as average - of course there are days when 10 tests are needed, but it can be as low as 4 (1 for each meal and 1 before bed), so an average of 10 means some days of around 15 testes, which does seem a lot.


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## rachelha

Copepod said:


> Concerned to see photo of blood drop obtained from pad of big toe in photo 1/11 - presumbly 3 year old Elizabeth, rather than 5 year old James, as hand has nail varnish.
> 
> I'm also surprised that 10 tests per day per person is quoted as average - of course there are days when 10 tests are needed, but it can be as low as 4 (1 for each meal and 1 before bed), so an average of 10 means some days of around 15 testes, which does seem a lot.



I can easily see how 10 tests per day is possible with children who are not having routine days.  I am suprised by how infrequently the pump cartridge needs changing, I think that must be a typo.


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## Riri

Afraid it can never be 4 for me. Always need to check before meals and 2 hours after meals - we're on 6 there before we start testing before getting in a car which is daily for me living in a rural community. I also test before bed and at 3am on a pump, so were up to 10. My diabetes is still quite unpredictable and there's hypos and highs so on average 12-15 is the norm for some people.


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## Redkite

StephenM said:


> Sorry but I think this woman has a form of OCD as ten tests every day are not necessary. The 3:00 a.m. ones disturb everyone and should only be done if there is reason for concern such as a worryingly low result before bed or the child has been vomiting.


She is not OCD, she's doing the best she can to look after her kids!  My son has at least 10 tests in a 24 hour period.  His clinic team (one of the top paed consultants in the UK) are very supportive of frequent testing, with the proviso that the data is USED, not just gathered and recorded.  My son's tests are used for instant decision-making, and also to build a daily profile of his levels which help us tweak his basal patterns, bolus ratios and sensitivity factors on a regular basis, essential when you have a growing child.  Extra tests are needed when hypo, 15 mins after treating a hypo, before and after exercise, etc.  One is blind without this information.

The night time tests are also essential.  Growth hormones are secreted at night and cause increased insulin resistance, meaning that while the child is having a growth spurt, more basal insulin is required overnight.  When the growth spurt finishes, there is a sudden drop in the need for insulin, though there are no outward signs.  If monitoring is not done there is a consequential risk of severe hypoglycaemia.  Most children including mine do not wake up when hypo, and risk dying in their sleep if their levels remain low for several hours.  Although this is relatively rare, sadly in our diabetes community there have been children who this has happened to.  No parent wants to take that risk, therefore we get up and test our children during the night. I rarely get more than 4 or 5 hours sleep!


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## Northerner

StephenM said:


> Sorry but I think this woman has a form of OCD as ten tests every day are not necessary. The 3:00 a.m. ones disturb everyone and should only be done if there is reason for concern such as a worryingly low result before bed or the child has been vomiting.



So Stephen, how often do you test a day, and for what reasons?


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## AJLang

I have to test ten times a day because my BGs are unpredictable and can run smoothly or go up and down unexpectedly - today is just one example of that happening despite all of my basal testing and carb counting.


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## Hanmillmum

10 tests is not unusual, it's more often the norm.

 I can give a good example of unexpected night-time hypoglycaemia this week. My daughters BG's had tended to be on the higher side (8's-10's) recently at night, this flipped 180 without warning and I found a 2.6mmol at 2am and a sound asleep 4 yo who took a fair amount of prodding to rouse enough to suck on the glucogel tube. It's a good reminder why I check. So please try not to be so judgemental, it is very necessary to us parents and it doesn't serve just to satisfy our anxieties.


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## Steff

Stephen come on everyone is waiting for your replies, don't be scared now, dropping your wayward views as usual and then not coming bck for a few days.be careful your becoming almost predictable


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## Pumper_Sue

StephenM said:


> Sorry but I think this woman has a form of OCD as ten tests every day are not necessary. The 3:00 a.m. ones disturb everyone and should only be done if there is reason for concern such as a worryingly low result before bed or the child has been vomiting.



Those children are on pumps Stephen and it's very important to test that often and even more when ill, due to DKA as there's no long acting insulin involved.
No idea how often you test Stephen, but even on MDI, I tested at least 10 times a days.

Even though you think it's over the top, how would you feel if you walked into your childs bedroom one morning and finding your child unresponsive due to you not testing in the night? Children as young as that do not recognise hypos in a way to alert the parents.


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## Lauras87

StephenM said:


> Sorry but I think this woman has a form of OCD as ten tests every day are not necessary. The 3:00 a.m. ones disturb everyone and should only be done if there is reason for concern such as a worryingly low result before bed or the child has been vomiting.



I test 8-10 times a day to see what's going on, I do before meals, 2 hours after, before bed, during the night & if I feel funny to check for hypos

You can't blindly inject insulin without testing & as a mother she is taking precautions.

How often do you test?


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## Adrienne

Do you know what I am quite heartened and happy.   I haven't seen the article yet but was astonished at Stephen's response, how thoughtless of him, does he have a child with type 1 !!!!

But thank you to all the rest of the adults that responded in such a lovely positive way, defending, if you like, us parents and what we do and how we test.   I would love to test only 4 times a day but we do a minimum of 8.  We are trying to use the sensor more and test less but sometimes only a finger test will do.    Parents often find themselves on the end of some adults with diabetes rudeness and lack of understanding with no thought as to the child with type 1 or indeed the parent.   We, as parents, understand you and our children with diabetes and we accept and understand that we do not know how you all feel and just by us accepting that we can look after our children.  However you do not know how we feel about our child having t1.   We hate it  with every single bone in our bodies, with every fibre of our being and yet because a mum tests 10 times in a 24 hour period, one of them overnight, someone has deemed her to be OCD.   Marvellous.

So I sincerely say thank you to everyone else who has answered, it is good to know that most of you understand what we do.


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## StephenM

First off – thank you for all those parents whose children have diabetes and are on pumps. You provided an interesting and informative insight into the problems you encounter in managing the disease. I still think, however, that it is possible to over test. The consultant I was seeing a few years ago told me that there is a danger of people chasing their own tail and going between hypos and elevated BGs to frequently (there is some evidence that variable BGs – despite a good average – can be worse than a slightly higher average with steady BGs). 


Now to reply to some specific points:-



Steff said:


> Stephen come on everyone is waiting for your replies, don't be scared now, dropping your wayward views as usual and then not coming bck for a few days.be careful your becoming almost predictable



To be polite – what a load of tosh. I am coming up to my 49th anniversary of Type I diabetes this year. In that time I have graduated and persued a successful career. In addition, as work is not everything, I have developed a number of outside interests. This means I have neither the time nor inclination to check this or any other website on a daily basis. Therefore it may often be a few days before I reply.



Adrienne said:


> Do you know what I am quite heartened and happy.   I haven't seen the article yet but was astonished at Stephen's response, how thoughtless of him, does he have a child with type 1 !!!!



You will have seen in the earlier part of my response that state that I have been Type I for nearly 49 years. This means I have been diabetic as a child, a teenager, a young adult and now as a middle aged person. Therefore I do have a lot of experience of diabetes at all stage of life. My statement was not thoughtless just an expression of what I think. I have also been a parent (although not of a diabetic child) so know what it is to be concerned about your child. So I do understand far better than you may think! At the end of the day most people (on this forum) have, or have someone with diabetes, and must manage the condition to try and minimise long term complications associated with the disease.


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## Steff

StephenM said:


> To be polite – what a load of tosh. I am coming up to my 49th anniversary of Type I diabetes this year. .



Why be polite your not usually, if your coming up to your 49th anniversary then even more so some of your comments like this OCD one are even worse..

Anyway not starting my week off with this kind of thing


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## StephenM

Steff said:


> Why be polite your not usually, if your coming up to your 49th anniversary then even more so some of your comments like this OCD one are even worse..
> 
> Anyway not starting my week off with this kind of thing



I was referring to your comment about me not replying straight away and you full well know it!


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## Northerner

StephenM said:


> First off ? thank you for all those parents whose children have diabetes and are on pumps. You provided an interesting and informative insight into the problems you encounter in managing the disease. I still think, however, that it is possible to over test. The consultant I was seeing a few years ago told me that there is a danger of people chasing their own tail and going between hypos and elevated BGs to frequently (there is some evidence that variable BGs ? despite a good average ? can be worse than a slightly higher average with steady BGs).
> ..



It is possible to overtest, I am sure, but I am glad to hear that this discussion has given you a better insight into why people might need to test more, and which may appear excessive to you. Also, worth bearing in mind that such testing was not possible when you were a child, and we have no figures for how many children may have suffered from that lack of opportunity that were diagnosed around the same time as you.


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## Redkite

Hi Stephen, as one of the parents on the forum, I'd just like to say that it's always good to have viewpoints from people of all different ages and experiences.  Personally I welcome all opinions, and though I feel competent and knowledgeable I think there's always something new to learn for us all.  The key thing is that if someone has a strategy that works for them, then that's great and nobody else should be judgemental about it.


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## DeusXM

I understand the rationale where you might be testing 10 times a day but I would query the necessity of testing at 3am every single night.

I understand the arguments behind it and I agree there should be some sort of regular-ish night testing. But arguably, if you test every night at 3am for two weeks and the readings are always say 6-7, that should probably suggest that the nighttime testing regime could be dialled down a bit - ie. maybe once every three nights (unless the day has been particularly different) until the readings start looking less steady, in which case, up the testing again. 

I can't imagine the psychological toll from constantly worrying about this stuff must be on parents but I would suspect this intensive testing doesn't actually help and probably reinforces the idea that kids with diabetes need loads of attention and can't possibly be taken out of their comfort zone. Fair enough, they're only 5 and 3 now but at some point the parents are going to have to learn to let go a little bit so the kids can do the same things other kids of their age do.

I would also suggest, as a former child with diabetes, testing every night will only serve to make the child feel miserable about their condition and make them feel less able to cope on their own. Again, this is probably less of a consideration when the kid is 5 but it will be a factor to consider in just a few years' time. If my mother kept coming into my room at 3am every morning to test my blood sugar, I put it to you that I would have been a very depressed child who also probably would have been rather less successful at school. It's all about balance.

Also on a separate note I'm a bit uncomfortable with an undercurrent here (and in other threads) that being a parent of a kid with diabetes automatically bequeaths some sort of moral high ground or higher level of understanding. It doesn't. We're all muddling through this together and frankly people shouldn't take it personally if someone else doesn't agree with their style. Particularly if the retort is simply 'well you're not a parent of a kid with diabetes so how could you possibly have anything worthwhile to suggest about managing diabetes?'.


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## Northerner

DeusXM said:


> ...Also on a separate note I'm a bit uncomfortable with an undercurrent here (and in other threads) that being a parent of a kid with diabetes automatically bequeaths some sort of moral high ground or higher level of understanding. It doesn't. We're all muddling through this together and frankly people shouldn't take it personally if someone else doesn't agree with their style. Particularly if the retort is simply 'well you're not a parent of a kid with diabetes so how could you possibly have anything worthwhile to suggest about managing diabetes?'.



I don't think that's the case at all, certainly not in my view. Unless you are the parent of a child with diabetes you can't know how it feels. It is a very different situation to having it yourself, because you can only observe. It's not a case of 'moral high ground', it's simply a different perspective that only those in that situation can be truly qualified to comment on. I don't think I've ever heard a parent say anything like your last comment - quite the contrary, parents are usually interested in hearing the perspective of those who have lived through, or are living through what their children are living through.


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## Redkite

DeusXM said:


> Also on a separate note I'm a bit uncomfortable with an undercurrent here (and in other threads) that being a parent of a kid with diabetes automatically bequeaths some sort of moral high ground or higher level of understanding. It doesn't. We're all muddling through this together and frankly people shouldn't take it personally if someone else doesn't agree with their style. Particularly if the retort is simply 'well you're not a parent of a kid with diabetes so how could you possibly have anything worthwhile to suggest about managing diabetes?'.



Steady on there, I said just the opposite a minute ago, ie. everyone's views are valid and however knowledgeable I feel I can always learn more from others' experiences.  There is no moral high ground where I'm coming from, and I don't mind people disagreeing, but making judgments such as that Mum is OCD is going too far!

The night testing I do is not always at 3, it varies according to the day he's had, exercise-wise and levels-wise, and also what his level is when I first venture upstairs.  It is never the same two days running, if it was nice and predictable I would definitely award myself a night's unbroken sleep from time to time   At least 2 nights out of every 3 I will need to take some action, from setting a temp basal to doing a correction, to waking him for lucozade like last night.  Often I then have to stay up a while longer or get up a second time to check the effects of what I've done.  The benefit to my son is that his levels aren't way off target for all the hours of the night - his a1c is lower and he feels refreshed from a night's sleep with proper levels.  If he doesn't want me going in his room when he's a teenager he will have to get up and test himself.  We're not going to risk losing him!


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## DeusXM

> Unless you are the parent of a child with diabetes you can't know how it feels.



Feelings aren't relevant. You don't have to know how someone 'feels' to be able to suggest what you believe to be a better course of action - BELIEVE being the key word.



> it's simply a different perspective that only those in that situation can be truly qualified to comment on. I don't think I've ever heard a parent say anything like your last comment.



I don't think that's the case at all, certainly not in my view. And I've certainly heard parents say something like my last comment, in this thread and in others. In fact, it was parents saying something like my last comment that led to some ugliness in a previous thread, wasn't it?

As I have reiterated before, there's no problem with parents disagreeing with other people's suggestions. I'd suggest, however, if this makes the parent want to say "you don't know how I feel and how would you know as you're not a parent of a T1?" rather than "well actually, have you considered X, Y and Z? These are important for my child to remain in good health because of A, B and C", then they're disagreeing on emotion rather than content. And that's not helpful for anyone.


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## Redkite

DeusXM said:


> As I have reiterated before, there's no problem with parents disagreeing with other people's suggestions. I'd suggest, however, if this makes the parent want to say "you don't know how I feel and how would you know as you're not a parent of a T1?" rather than "well actually, have you considered X, Y and Z? These are important for my child to remain in good health because of A, B and C", then they're disagreeing on emotion rather than content. And that's not helpful for anyone.



I don't mind if people don't understand how I feel, I'd just prefer everyone to be considerate of each other.  Saying to a person who night-tests (whether a parent or not) "you're OCD, you don't need to do X, you should do Y" is likely to just raise hackles.  Why not say instead, "gosh you must be shattered doing all that night testing, is there any way instead of doing X that you could try Y, as this has worked successfully for me".  It's just a bit more diplomatic and non-confrontational IMO


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## Hanmillmum

Well said Redkite.
Some posts do invoke a defensive reaction. You must agree that it is fairly judgemental and ignorant to make sweeping statements about a group of people. We are trying to convey our experience that's all IMO. I for one will take any advice or critical thinking because this is a SUPPORT forum, but I will also defend against any insults.

I personally and sincerely don't feel I/my family have it worse or better than anyone else here, all I can talk about is our situation and how that affects us and offer advice to others on what works well for us and what doesn't.  

"I would also suggest, as a former child with diabetes, testing every night will only serve to make the child feel miserable about their condition and make them feel less able to cope on their own. Again, this is probably less of a consideration when the kid is 5 but it will be a factor to consider in just a few years' time. If my mother kept coming into my room at 3am every morning to test my blood sugar, I put it to you that I would have been a very depressed child who also probably would have been rather less successful at school. It's all about balance."Deus XM

Completely agree with this, it is something I think about, presently she (dd) doesn't wake and is non the wiser. I don't routinely test at "X" time, it's very dependent on the sort of day she has had, growth hormones, endless colds, much like Redkite suggests. There are odd nights that can be left. I would hope too for a period a stability very soon as I am sick & tired of it too. I do try hard for my daughter to feel as normal as her peers and would always strive to find the balance.


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## Adrienne

DeusXM said:


> Feelings aren't relevant. You don't have to know how someone 'feels' to be able to suggest what you believe to be a better course of action - BELIEVE being the key word..



You are very rude and seem to just cause problems.  

Feelings are absolutely part of diabetes regardless of who has the diabetes.  I have said countless times I have no idea what it feels like to be the one with diabetes but those with the type 1 don't know the feelings the parents have (unless of course have a child with diabetes themselves).    Feelings are all as important as each other and you seem to put yourself on a step higher than the 'parents', well that is just silly and condescending as it is us parents who look after the children until they can.  If I want to test my child over night every night I will as that is how I feel I know she is safe.  She doesn't wake up so I am not disturbing her at all.  (I am seeing red here and getting angrier actually as I type).  My very good friend's daughter died the day before her 13th birthday of a hypo in the early hours.    I WILL TEST AT NIGHT and I do NOT expected to be told I am over testing by anyone whilst I am keeping my daughter as safe as I possibly can to the best of my ability with all the tools at my disposable.  My daughter's medical team are one of the top teams in the UK and they think I and many others are doing a fabulous job.  I've just spent this week sorting out a plaque for my friends daughter to be stood at the bottom of the tree we planted in her memory a few years ago.

There you go there are some feelings for you........


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## Hanmillmum

That's incredibly sad Adrienne and I'm so sorry for your friend 




To give this thread perspective it is a V small minority who express their resentment for whatever reason - similar to the last controversial thread! I'm leaving it well alone now.


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## Redkite

Heartbreaking to hear of a life cut short by diabetes, how terrible for her family.  This is the fear that makes me night test no matter how exhausted I am.


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## DeusXM

> If I want to test my child over night every night I will as that is how I feel I know she is safe.



And no-one is saying that is necessarily wrong.

As has been pointed out, this forum is about 'support'. My question is whether 'support' is simply rubber-stamping what other people are doing, or raising the harder questions. 

I can't imagine what it must be like to know someone who's been lost to us from a nighttime hypo and I've nothing but sympathy for you and those involved.

But you can't let emotions dictate how diabetes is managed. 

I fully understand why you are saying you want to test your child every night so that you know she is safe. And indeed, on a practical level, that makes sense.

But what is going to happen when she wants go on a sleepover, one day? What is going to happen when she wants to do her own thing. What about her managing her own safety? 

The correllary to this is what happens when a child's friend is killed crossing a road? Does that mean you never let your child go near a road without you? I suspect probably not, but you'll probably employ some greater vigilance. Diabetes is no different.

Neither of us have a more valid view than the other (this has been my point all along, the fact that a non-parents view shouldn't be so easily dismissed) but we are the flipside of the same coin. 

And from my view, I think you're likely to put yourself in an extremely difficult emotional situation if you are going to conflate your ability to test your daughter at night with her safety. Because there's several paths she can go down. She can have this attitude that mum is always going to fix things and keep her safe - and she's going to be in for a massive shock when she leaves home. Or, she might start resenting and rebelling against you for something she sees as 'her' condition and nothing to do with you. She might start being extremely critical of your involvement in her diabetes management particularly if she feels the methods you've put in place for your peace of mind are restricting her ability to grow. Or she might be perfectly well adjusted and the transition will be extremely smooth with no problems at all. It's very hard to predict with teenagers, and I don't envy what you face at all - which is why I'm suggesting a way in which you might be able to save yourself some of the hassle. Whether or not you agree is your choice, of course.

The point is that very soon, your daughter's safety and diabetes management won't be your responsibility. It'll be hers. And I appreciate (from a very removed position) that getting the balance right is the hardest part of being a parent, regardless of whether diabetes is involved. 



> all I can talk about is our situation and how that affects us and offer advice to others on what works well for us and what doesn't.



Which is all any of us can do. I've said that for me, the idea of every-night testing by my parents would have done me far more harm than good overall, and explained why with rational, factual reasons. People are more than welcome to disagree with that but if the counter-argument is 'you don't know how I feel', then I suggest we're not getting anywhere. I can only hope that us ex-kids with diabetes can give parents an insight into what might be going through their kid's mind. To drive the point home, there's a lot of discussion about how parents feel but there doesn't seem to be a lot of thought given to what the kid might want. If we're going to involve feelings, let's make it about both the affected parties.

I agree there's been some poor phrasing in this thread but I do think everyone needs to stop taking generalised comments so personally. Because if we were, I'd be seeing the red mist about some of the things said here too. I'm choosing to not take them personally and see them as a legitimate difference of opinion. What's the point in being offended by someone having a different opinion to you?


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## bev

Hi all,

Why is there always the assumption that testing in the night is for hypo's?If I didnt test in the night levels would be off the scale at the moment as Alex is a growing teenager! The pump is brilliant but it doesnt automatically give a correction of insulin! Growth hormones start about half an hour after Alex falls asleep which means night-testing - as the alternative isnt an option. And before anyone says it - we never know which night the hormones will start/stop so we cant just up the basals as sometimes its one night per week other times its three weeks solid so no patterns to change anything.

p.s. For those who dont have a child with Type 1 please do remember that you dont know how it feels for us parents - and similarly we dont know how it feels for anyone with Type 1 - we can only guess - but being judgemental of how others' choose to deal with it is neither helpful nor productive and only serves to create animosity where there is no need other than to make the person being judged feel got-at - and that is not what this 'support' forum is about. We are all on the same side so please remember that when you decide to use inflammatory replies it only serves to show that you are not here for the right reasons.Bev


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## AlisonM

I've no notion what it is to have a child with a chronic illness, but I do know what's like to *be* a child with such and I know how upset my mother would get when some idiot challenged her care of me. She did a sterling job and I'm alive today only because of the lengths she went to to ensure I got the best care. She saved my life more than once.

Eczema, is often just a nasty rash, but in my case it was far more than that. I was in and out of hospital throughout my childhood, at least twice a year, sometimes more. I would be bedridden for days at a time, several times a year and covered in bandages for weeks after that because the Eczema was so bad. More than once, it nearly killed me through anaphylactic shock. Mum was a star, how she coped with it I can't begin to imagine. She regularly spent nights sitting by my bed, trying to keep my temperature down (or up), monitoring my breathing when things were at their worst and my BP was falling. I won't go into all the gory details, it wasn't pleasant and much of the trouble was caused by side effects from the drugs needed to control the Ezcema. For instance, vast doses of steroids can cause havoc with a body and I'm paying the price for that to this day. In fact my diabetes may be a direct result of all those years and all those medications.

IMO, whatever a parent needs to do in such circumstances to ensure the health of their child is surely reasonable. If a child cannot wake when hypo, then testing at night is surely essential. If it takes testing 10 or even 20 times a day then so be it. If it requires night testing, then so be it. We have no right to criticise till we've walked a mile in those shoes.

From all I can see the parents in here aren't testing their kids for the 'fun' of it, but to protect them. There is a genuine need for, and rationale behind their actions that cannot be denied.


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## Redkite

Hi Alison,

Just wanted to say I sympathise with how horrendous it must have been for you suffering from eczema so badly, and nightmare for your Mum.  I have a friend whose son is the same age as mine and he has very bad eczema too.  His Mum has to apply cream several times a day (has to go into school to do this), and he has wet wraps and special seamless underclothes.  It's a hard slog for her and she encounters similar problems with unhelpful school staff as some of us D Mums do.  Sometimes it's not so much the health condition you are dealing with, as all the surrounding "stuff" that goes with it!  She doesn't know much about caring for a child with D, and I don't know much about caring for a child with severe eczema, but we can both relate to the relentlessness of doing the caring, and the upset caused by insensitive or ignorant other people!


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## Redkite

DeusXM said:


> I agree there's been some poor phrasing in this thread but I do think everyone needs to stop taking generalised comments so personally. Because if we were, I'd be seeing the red mist about some of the things said here too. I'm choosing to not take them personally and see them as a legitimate difference of opinion. What's the point in being offended by someone having a different opinion to you?



Point taken DeusXM.  Lets all try to phrase our views in a kind and sensitive way


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## bev

AlisonM said:


> I've no notion what it is to have a child with a chronic illness, but I do know what's like to *be* a child with such and I know how upset my mother would get when some idiot challenged her care of me. She did a sterling job and I'm alive today only because of the lengths she went to to ensure I got the best care. She saved my life more than once.
> 
> Eczema, is often just a nasty rash, but in my case it was far more than that. I was in and out of hospital throughout my childhood, at least twice a year, sometimes more. I would be bedridden for days at a time, several times a year and covered in bandages for weeks after that because the Eczema was so bad. More than once, it nearly killed me through anaphylactic shock. Mum was a star, how she coped with it I can't begin to imagine. She regularly spent nights sitting by my bed, trying to keep my temperature down (or up), monitoring my breathing when things were at their worst and my BP was falling. I won't go into all the gory details, it wasn't pleasant and much of the trouble was caused by side effects from the drugs needed to control the Ezcema. For instance, vast doses of steroids can cause havoc with a body and I'm paying the price for that to this day. In fact my diabetes may be a direct result of all those years and all those medications.
> 
> IMO, whatever a parent needs to do in such circumstances to ensure the health of their child is surely reasonable. If a child cannot wake when hypo, then testing at night is surely essential. If it takes testing 10 or even 20 times a day then so be it. If it requires night testing, then so be it. We have no right to criticise till we've walked a mile in those shoes.
> 
> From all I can see the parents in here aren't testing their kids for the 'fun' of it, but to protect them. There is a genuine need for, and rationale behind their actions that cannot be denied.




Hi AlisonM,

I can relate to all you have said. My eldest daughter also had eczema so I know just how awful it can get - luckily she grew out of it but I remember the pain she went through and (like your mum) sat there sorting dressings out and dealing with the cries and pain all heartbreaking.

To those who may think that our children will somehow hold it against us if we disturb them through the night. I can quite honestly say that Alex often thanks me for setting my alarm (he knows I get tired) and is extremely grateful that he is not only growing in height but he is also facing a future without complications. Yes he might be grumpy when I have to roll him over sometimes to find the pump for a correction - but then teenagers are often grumpy for no apparent reason anyway! Lets get a bit of perspective here - we are not waking our children because we enjoy setting our alarms for the middle of the night - nor are we trying to make our childrens lives any more difficult than they need to be - we are doing it because research shows us that high levels cause complications and low levels can cause death - what choice do we have?Bev


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## DeusXM

> I can quite honestly say that Alex often thanks me for setting my alarm (he knows I get tired) and is extremely grateful that he is not only growing in height but he is also facing a future without complications.



I'm probably going to regret posting this, but here goes....


...that's the situation for now. But when is it going to end? I can assure you that when I was 14, the last thing I wanted was my mum coming into my room and poking and prodding me! Maybe your son hasn't reached that point of self-consciousness yet. But he almost certainly will. 

Also...and this is the question I know I'm going to regret asking....why on earth isn't Alex taking responsibility for his own diabetes? Why is he relying on his mum to do all this for him? If he's a teenager, he's plenty old enough to do the testing, bolusing, calculating etc all by himself and he needs to establish these as habits for life.

The most important lesson I learned from my diabetes childhood was that whether or not I got complications or whatever would be nothing to do with my parents or my doctors or anyone else. Everything that happens to me related to diabetes is entirely under my control. Yes, people can help you, but ultimately I realised the kind of life I wanted and the quality of life I wanted would be dependent on my actions and no-one else. I guarantee you that my life has been fuller, richer and more exciting precisely I took responsibility for myself as soon as possible. If a parent thinks their kid isn't ready for this responsibility, surely it's the parent's job to make them ready, no matter the cost? If a kid feels that diabetes is some relentless trauma where an overnight high or a hypo will instantly lead to some catastrophe, and that only their mum can save them, they might never grow out of that mindset and then they'll never realise their full potential because deep down they'll be too frightened to step out the door.

There is more to growing up with diabetes keeping your blood sugar under control. Much more. Parents who can help keep their kids sugars under control deserve a round of applause because god knows, it's hard enough when it's your own sugar. But please, don't make your kid's life all about diabetes all the time.


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## AlisonM

The obvious answer Deus is that children mature at different rates. You may have been old enough then to take charge for yourself, but not all children would be. I certainly wasn't emotionally old enough at 14 to take responsibility for my own medical needs it was another two years before I full control. Human being are erratic creatures, they grow and mature at different rates and you have to take that into account.


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## Redkite

DeusXM said:


> Also...and this is the question I know I'm going to regret asking....why on earth isn't Alex taking responsibility for his own diabetes? Why is he relying on his mum to do all this for him? If he's a teenager, he's plenty old enough to do the testing, bolusing, calculating etc all by himself and he needs to establish these as habits for life



I'm sure Bev will reply re her son, but in my son's case (he is 12), he does take responsibility for many aspects of his d care.  I see it as a spectrum of responsibilities that need to be taught to him and handed over gradually when he is ready, rather than all or nothing.  So he tests and boluses himself during the day, he makes attempts at carb counting using Carbs and Cals book when he goes to tea at friends' houses, he makes decisions about how much of a snack to have before P.E., etc.  I still do all the testing when he is asleep (no need to burden him with that, he deserves a good night's sleep), and make all the strategic decisions about changes to his pump settings.  I do discuss these with him, but he isn't interested enough yet!  He also cannot yet do his own cannula insertions, but this will come in time I'm sure.

I take your point about older teenagers becoming self-conscious and wanting more privacy, and frankly I'm not keen to pry into what goes on in a teenage boy's bedroom   So if there comes a point when he says he'd prefer me not to come in and night test, he'll have to do it himself!

From what I've read, professional advice seems to indicate that parental involvement in d care should be maintained throughout adolescence, with the aim of empowering the young person to care for themselves, yet still providing a safety net and support, so they can "hand it back" for a while if it gets too much for them.  All I hope is I get it right for him!


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## bev

DeusXM said:


> I'm probably going to regret posting this, but here goes....
> 
> 
> ...that's the situation for now. But when is it going to end? I can assure you that when I was 14, the last thing I wanted was my mum coming into my room and poking and prodding me! Maybe your son hasn't reached that point of self-consciousness yet. But he almost certainly will. Alex is just 15 - teenagers SLEEP! That is what their bodies need. Alex is at the moment taking his moch GCSE's - so he needs sleep. Alex treats all hypo's and hyper's during the day - he does the majority of his care. The only time I ever touch the pump is at 3am in the morning and that is because HE IS ASLEEP.
> 
> Also...and this is the question I know I'm going to regret asking....why on earth isn't Alex taking responsibility for his own diabetes? Why is he relying on his mum to do all this for him? If he's a teenager, he's plenty old enough to do the testing, bolusing, calculating etc all by himself and he needs to establish these as habits for life. Alex does all of this himself - the only time I do this is if he is a)unwell or unsure of what to do or b)if he is asleep.
> 
> The most important lesson I learned from my diabetes childhood was that whether or not I got complications or whatever would be nothing to do with my parents or my doctors or anyone else. That is not strictly correct - if you have a bad team who give useless advice then it isnt your fault if you arent educated in good diabetes management. Everything that happens to me related to diabetes is entirely under my control. To some extent - but if you are not well educated in the management of diabetes then it is not - and many teams out there still give useless advice to parents. And for some people no matter what efforts they put in they still cant achieve good control - that is absolutely not their fault! Diabetes control is not something to 'blame' on someone if they cant get good control - its about good education - which is what I do brillliantly with Alex - hence all the Conferences I take him to to educate him - even though you seem to think that at 14 he should know everything about diabetes - why then are there forums for adults? Why are you on here? You knew it all at 14 - even though you didnt have a pump or have to deal with all that entails you seem to think you were better than any other teens who deal with diabetes nowadays - and yet you still have questions? Diabetes education never stops - things change all the time - hence the reason that adults need on-going support and help - thats why Alex (and other teens) dont know it all and on occasion need help and support - it doesnt make him rubbish at diabetes! [/COLOR]  Yes, people can help you, but ultimately I realised the kind of life I wanted and the quality of life I wanted would be dependent on my actions and no-one else. I agree to some extent that its down to the person with Type 1 - ONLY if they have been educated and feel supported through it all - asking for help isnt a weakness - it shows maturity. I guarantee you that my life has been fuller, richer and more exciting precisely I took responsibility for myself as soon as possible. How are you comparing this? How do you know what the alternative was? If a parent thinks their kid isn't ready for this responsibility, surely it's the parent's job to make them ready, no matter the cost? Alex is compliant and does above and beyond what most of his peers do - so I have no worries there but interested to know how you *make* them ready? Ask Tina and others how or why her 18 year old wont test - what would you suggest? Thankfully I dont have that problem with Alex but if I did I certainly would want to get help and support as Tina has tried so many times and done everything in her power to deal with it but still her son is not compliant - I am sure Tina would like to hear your advice.  If a kid feels that diabetes is some relentless trauma where an overnight high or a hypo will instantly lead to some catastrophe, and that only their mum can save them, they might never grow out of that mindset and then they'll never realise their full potential because deep down they'll be too frightened to step out the door. I dont know any kids who think this?
> 
> There is more to growing up with diabetes keeping your blood sugar under control. Yes your right and thankfully Alex enjoys a rich and varied life and has many friends and is included in all aspects of teenage life so no worries there - but he does have a mindful respect for keeping an eye on his BG's as it makes him feel better when he is in range. Much more. Parents who can help keep their kids sugars under control deserve a round of applause because god knows, it's hard enough when it's your own sugar. Thankyou. But please, don't make your kid's life all about diabetes all the time.


 Thankyou again - I most certainly dont make Alex's life all about diabetes - he is a normal well-adjusted 15 year old who puts me through normal teenage stress.

I think you are one of a hand-full on this forum who enjoys winding people up - but what happens is people just then start to ignore your posts - which is a shame as some (not all) of your advice might be useful to others and might help them get through rough times. Until you have children of your own (and more specifically a child with Type 1) you cannot possibly understand what it is to parent/care for them.


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## DeusXM

> Until you have children of your own (and more specifically a child with Type 1) you cannot possibly understand what it is to parent/care for them.



Which means we're right back to where we started - the point was made that there's an undercurrent here that unless you're a parent of someone with diabetes, you have nothing to contribute. Thanks for completely validating that. Once again, just because I don't have experience of raising a kid with diabetes doesn't mean I can't quite clearly see how certain actions might affect the kid with diabetes.

Parent as you see fit. But in less than a year's time, your son will be old enough to leave home, join the army, get a job, get married...don't you think that maybe by that point, he should be independently managing his diabetes with you as emergency backstop support, rather than you taking the responsibility and primary role in all of this? There's an important distinction between having someone in your corner, and being reliant on them.

Also, no-one ever accused you or your son of being 'rubbish at diabetes'. The word 'blame' was also never mentioned either. Projection, maybe? I was trying to make the point that it's the person with diabetes who's in charge of their life, not the diabetes, but if you want to take a generalised comment on empowering people with diabetes as a personal criticism of a parent, then I wash my hands of this whole thing as clearly, rational discussion isn't on the table.



> The only time I ever touch the pump is at 3am in the morning and that is because HE IS ASLEEP.



Yes, but by the time you've walked into his room, switched on the light to see what you're doing, found a finger, stuck a sharp object in it, and then either pressed a few buttons on his pump or brought him some glucose, I bet he isn't. The end result is still the same as if he'd got up to do it himself, except you're also awake.


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## Redkite

Hi DeusXM, just to say that when I do a night test I don't switch on the light in his room, and pricking his finger doesn't wake him up.  He has the freestyle lite which has a light on it, and his pump screen lights up, so I can work in the dark.  Correcting through the pump or setting a TBR can also be done without disturbing his sleep.  The only things I need to wake him for is treating hypos or if I need to correct by pen (would be a rude awakening otherwise to jab a needle in him!).  So actually he gets uninterrupted sleep most nights.  He is a happy soul and doing well in school


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## bev

Redkite said:


> Hi DeusXM, just to say that when I do a night test I don't switch on the light in his room, and pricking his finger doesn't wake him up.  He has the freestyle lite which has a light on it, and his pump screen lights up, so I can work in the dark.  Correcting through the pump or setting a TBR can also be done without disturbing his sleep.  The only things I need to wake him for is treating hypos or if I need to correct by pen (would be a rude awakening otherwise to jab a needle in him!).  So actually he gets uninterrupted sleep most nights.  He is a happy soul and doing well in school




Hi Redkite,

He he - Alex doesnt stir either! He has even drunk coke in his sleep and asked why there were empty cans by his bed as he doesnt remember me waking him - hilarious! Alex sometimes holds a finger up for me to test too - but not sure whether thats to be helpful or something else entirely!Anyway - like your son - he doesnt get disturbed mostly so all good. We must be doing something right as his HBA1C is excellent and Clinic commented when we went to their pump 'refresher' course that Alex's knowledge was such that he could have led the whole thing for the parents - hilarious! Not bad for a 15 year old !Bev


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## Hanmillmum

Redkite & Bev, you do incredibly well to have well balanced pre-teen and teen boys - a credit to you both


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## Adrienne

bev said:


> Hi Redkite,
> 
> He he - Alex doesnt stir either! He has even drunk coke in his sleep and asked why there were empty cans by his bed as he doesnt remember me waking him - hilarious! Alex sometimes holds a finger up for me to test too - but not sure whether thats to be helpful or something else entirely!Anyway - like your son - he doesnt get disturbed mostly so all good. We must be doing something right as his HBA1C is excellent and Clinic commented when we went to their pump 'refresher' course that Alex's knowledge was such that he could have led the whole thing for the parents - hilarious! Not bad for a 15 year old !Bev




Nope Jessica doesn't stir at all when I test her and never knows when I've treated her for a hypo.  She definitely doesn't get a disturbed sleep.    She can drink a small can of coke through a straw will fizz all still intact in under 10 seconds whilst asleep.  When she is awake it is never that fast. Jessica never remembers any hypo treatment at night.   

I think that the saying "The person with diabetes who knows the most lives the longest." Elliot Joslin, is so right.  As we are our childrens advocates we learn so much, as much as we can possibly stuff in to our heads as we are 'playing' with someone else's body and so we can't make mistakes or get it wrong.   We then pass on the knowledge and information we have learnt to our kids over time rather than all at once so that by the time they are probably secondary school age they can look after themselves.  Sometimes they don't want to and we are there to step back in and help is they ask or look like they are struggling and that is fine.   Whilst my child wants or needs me to help her in any way, then I will and that is not just about diabetes actually, it applies to anything that is in my power to do.


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## deesell79

*mother with ocd*

Hello folks

My daughter Elizabeth was 9months old when she was first diagnosed only three months after my son James who was 2.  As an adult i check my blood about 4-6 times per day, But young children have growth hormones to contend with that affects blood glucose levels and insulin requirements.  My daughter elizabeth had 2 very severe hypos when she was 13months old where she lost consciousness, i'm sure that any parent who has seen their baby like this will understand why i have 'OCD' tendencies when it comes to my childrens health and well being, it does not disturb their sleep at 3am but gives me peace of mind that i will see my child alive and well the next morning.  As for the maths my apologies, i cannot remember if it was my mistake or a typo, but at the time i had a reporter from the bbc at my house from 7am and i was nervous.  The reason i agreed to this story to raise awareness of type 1 diabetes, and yes it is a huge part of my families life.


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## Northerner

deesell79 said:


> Hello folks
> 
> My daughter Elizabeth was 9months old when she was first diagnosed only three months after my son James who was 2.  As an adult i check my blood about 4-6 times per day, But young children have growth hormones to contend with that affects blood glucose levels and insulin requirements.  My daughter elizabeth had 2 very severe hypos when she was 13months old where she lost consciousness, i'm sure that any parent who has seen their baby like this will understand why i have 'OCD' tendencies when it comes to my childrens health and well being, it does not disturb their sleep at 3am but gives me peace of mind that i will see my child alive and well the next morning.  As for the maths my apologies, i cannot remember if it was my mistake or a typo, but at the time i had a reporter from the bbc at my house from 7am and i was nervous.  The reason i agreed to this story to raise awareness of type 1 diabetes, and yes it is a huge part of my families life.



Hi deesell79, welcome to the forum  I hope you can see that the majority of our members overwhelmingly support what you do for your children, just a couple of uninformed people who hopefully have now been enlightened!

Thank you for telling your story, I am certain it will raise awareness and be of great help to others who may find themselves in such a difficult situation


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## Adrienne

deesell79 said:


> Hello folks
> 
> My daughter Elizabeth was 9months old when she was first diagnosed only three months after my son James who was 2.  As an adult i check my blood about 4-6 times per day, But young children have growth hormones to contend with that affects blood glucose levels and insulin requirements.  My daughter elizabeth had 2 very severe hypos when she was 13months old where she lost consciousness, i'm sure that any parent who has seen their baby like this will understand why i have 'OCD' tendencies when it comes to my childrens health and well being, it does not disturb their sleep at 3am but gives me peace of mind that i will see my child alive and well the next morning.  As for the maths my apologies, i cannot remember if it was my mistake or a typo, but at the time i had a reporter from the bbc at my house from 7am and i was nervous.  The reason i agreed to this story to raise awareness of type 1 diabetes, and yes it is a huge part of my families life.



Hi deesell79

Welcome to the support forum.  Its a great place actually and the majority are lovely and friendly and supportive.   I understand totally.  My daughter had her first insulin injection around 5 to 6 weeks old and she is now 13 years old.  She has numerous minor fits for the first two years through the rubbish regimes around at the time and just the nature of d.    She had a major one aged 7 again for no apparent reason just d.  I used glucagon that time.  Your story is a great awareness story.  Thanks for sharing it.


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## Redkite

Adrienne said:


> Hi deesell79
> 
> Welcome to the support forum.  Its a great place actually and the majority are lovely and friendly and supportive.   I understand totally.  My daughter had her first insulin injection around 5 to 6 weeks old and she is now 13 years old.  She has numerous minor fits for the first two years through the rubbish regimes around at the time and just the nature of d.    She had a major one aged 7 again for no apparent reason just d.  I used glucagon that time.  Your story is a great awareness story.  Thanks for sharing it.


Hi and welcome . Thanks for such a great article, lets hope it will help raise awareness of how much hard work goes into managing type 1!  I take my hat off to you coping with not only your own D but 2 little ones as well - I guess you must have quite a disciplined routine (if that's OCD then I am too!).

Do you mind me asking  the night tests if there is ever a night when one of you doesn't need some action to be taken?  I ask this because I remember reading a post from a Mum with 2 T1 children, who despite having the same tea and evening routine, one could be high and the other hypo on the same night?!!


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## deesell79

thank you for welcoming me to the forum with such lovely comments.

Firstly i understand from both perpectives as a person who has lived with diabetes for thirty years, things are a lot better now believe me!! and as a parent of two children with diabetes, i am trying the best that i can to allow my children to live a normal a life as possible by trying to keep their blood levels as stable as possible, so that they feel well.  Unfortunately on insulin pumps it is necessary to check blood levels every 2/3 hours during the day! there are many occasions where my children have caught their pump cannulas without realising and only by regular checking at school have they noticed the blood levels rising and have alerted me!! regular checking prevents hospital stays so a 30 second finger prick bothers neither me nor my children!!!


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## deesell79

Redkite said:


> Hi and welcome . Thanks for such a great article, lets hope it will help raise awareness of how much hard work goes into managing type 1!  I take my hat off to you coping with not only your own D but 2 little ones as well - I guess you must have quite a disciplined routine (if that's OCD then I am too!).
> 
> Do you mind me asking  the night tests if there is ever a night when one of you doesn't need some action to be taken?  I ask this because I remember reading a post from a Mum with 2 T1 children, who despite having the same tea and evening routine, one could be high and the other hypo on the same night?!!



Hi not at all, every night is different, and every blood glucose test result is different, they both go to the same school, although elizabeth is still preschool they have the same routine as main school, we eat the same evening meals weighed and carb counted, and have the same evening routine! yet during the night blood glucose levels can be very different.  On Tuesday night at 3am elizabeths blood glucose levels were 6.3 and James were 15 i had to put him on an increased temporary basal for a few hours to get his levels back down,  neither had done anything different. It is very rare that i will go more than two or three nights without having to correct/put tbr on/treat a hypo on at least one of us!! so to answer your question yes they can have varying blood glucose levels during the night and i quite often need to do something!!


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## delb t

Hi Deesell79- welcome from me I think its fab youve joined and shared your story with us and no I dont think you have OCD tendancies- I Would do the same in your position


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## Redkite

deesell79 said:


> Hi not at all, every night is different, and every blood glucose test result is different, they both go to the same school, although elizabeth is still preschool they have the same routine as main school, we eat the same evening meals weighed and carb counted, and have the same evening routine! yet during the night blood glucose levels can be very different.  On Tuesday night at 3am elizabeths blood glucose levels were 6.3 and James were 15 i had to put him on an increased temporary basal for a few hours to get his levels back down,  neither had done anything different. It is very rare that i will go more than two or three nights without having to correct/put tbr on/treat a hypo on at least one of us!! so to answer your question yes they can have varying blood glucose levels during the night and i quite often need to do something!!


Hard work indeed!  It's fascinating isn't it that there are obviously all sorts of variables that we can't take into account, but make each person's D unique to them.  The human body is an amazing thing.....


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## Northerner

Redkite said:


> Hard work indeed!  It's fascinating isn't it that there are obviously all sorts of variables that we can't take into account, but make each person's D unique to them.  The human body is an amazing thing.....



Especially when it's growing!  Until I was diagnosed I never really considered just how amazingly complex human beings are, both mentally and physically. So much that you read relating to health tends to be reduced to very simplistic terms - don't eat that it's bad for you, do eat this it's good for you - but what actually happens to us every minute of every day is astonishing!


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## Redkite

Northerner said:


> Until I was diagnosed I never really considered just how amazingly complex human beings are, both mentally and physically.



I know, me too. Having to "think like a pancreas" made me appreciate just how amazing our bodies are, constantly fine tuning everything in the background without us having to give any thought to it!


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