The family living with type 1 diabetes

[StephenM]

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!

 

[Northerner]

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.

 

[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.

 

[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?'.

 

[Northerner]

...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.

 

[Redkite]

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!

 

[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.

 

[Redkite]

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 🙂

 

[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.

 

[Adrienne]

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........😡

 

[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.

 

[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.

 

[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?

 

[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

 

[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.

 

[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!

 

[Redkite]

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 🙂

 

[bev]

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

 

[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.

 

[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.