The family living with type 1 diabetes

[Redkite]

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!

 

[bev]

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.

 

[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.

 

[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 🙂

 

[bev]

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

 

[Hanmillmum]

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

 

[Adrienne]

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. 🙂

 

[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.

 

[Northerner]

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 🙂

 

[Adrienne]

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.

🙂

 

[Redkite]

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?!!

 

[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!!!🙂

 

[deesell79]

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!!

 

[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

 

[Redkite]

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.....

 

[Northerner]

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!

 

[Redkite]

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!