Parent of newly diagnosed type 1 teenager

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Tina63

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My son was diagnosed at Christmas with type 1 just days before his 16th birthday. Everything has gone really well so far except that he 'cheats' and snacks all evening long without using his insulin. He is on Novorapid and Lantus and on the whole his levels are within range, but probably only because he is honeymooning. He is higher during the evening, so his answer is to 'forget' to test at bedtime. Any suggestions please?
 
Hi Tina and a warm welcome to the forum,im not a parent of a child with diabetes so cant help directly, but wanted to welcome you to the site, have a good look around the parents section none of them bite and there a great bunch xx:D
 
Hello and welcome to the forum from me too. Like Steffie, I'm afraid I can't help you with your question either. But I'm sure there are a few who can.

Andy 🙂
 
Hi Tina, welcome to the forum 🙂 Sorry to hear of your son's diagnosis. It's still relatively recent, so the reality and repercussions may well have not sunk in yet - particularly since he seems to be 'getting away' with snacking etc. This may be a gentle introduction for him, but he needs to be aware of the potential problems that can ensue if he doesn't take it seriously. We have heard (and I am sure you have too) about people now in their early 20s who failed to look after themselves properly in their teens and are now facing the very real problems with their eyesight or kidneys, or perhaps pain from neuropathy, or even 'unseen' problems like difficulties with their digestion.

Diabetes can be the cause of some awful complications, but if you take care of yourself then they need not be a problem - 'Well controlled diabetes is the major cause of...absolutely nothing!' as one wise person said! 🙂

I'd recommend you get a copy of Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas. It offers excellent advice and explanations of every aspect of living with Type 1 diabetes, and may give you some ideas for persuading your son to put in the work now so that it is less of a burden and only a small inconvenience in the future. Whatever ambitions he may have, he needs to stay fit and healthy if he is to make the most of his opportunities. I know it's not easy getting this across without sounding like you are nagging or fussing, but you know your son and the best ways to help him 🙂

You might also be interested in the Children with Diabetes website, for support from lots of parents of Type 1 children, plus our own parents section, of course! http://www.childrenwithdiabetesuk.org/

Please feel free to ask any questions you may have and we'll do our best to help you out - or have a good old rant when things start to get on top of you, we will understand!
 
Hi Tina. Welcome🙂

Can't really advise on how to get him to take it seriously. I was 13 when diagnosed, but things were very different back then. There wasn't home blood testing for a start and I tended to do as I was told. I suppose, at his age, he is more his own boss and therefore feels he can decide for himself where the balance comes between strict control and freedom of lifestyle.

Unfortuneately, I've read that the early years are crucial to try and get good control so that he doesn't have to worry so much later on. It's something that he'll have for the rest of his life, potentially 90+ years, so any bad habits now may well cause regret later on.

Just to add, we have members who have many members who have had diabetes for 30 and 40+ years who are as healthy as anyone else of their (our) age so good health is something to be expected with reasonable self management rather than just hoped for.

Rob
 
Thanks everyone

Thanks everyone for your kind responses. I do feel on the whole we are getting on really well with it all. I knew what was wrong with him for some time before diagnosis, he just wouldn't go to the doctors, knowing himself what was wrong and having a massive needle phobia. Well he got over that within 24 hours thankfully! We were taught carb counting from about the 4th or 5th day so have tried very hard to stick with that and have seen the results. His HbA1c at diagnosis was 15.8, came down to 12.9 after 4 weeks, then was 7.8 after 10 weeks, we have clinic in a weeks' time so dying to see where it is now. He was very overweight last year though, and lost stones during the weeks leading up to diagnosis, but the weight is now piling back on. With everything going on I am just the 'nagging mum' so it's hard trying to keep track of everything and not making him angry whilst only having his best interests at heart.
 
Hi Tina,
sorry to hear that you have had to join the illustrious 'parents of T1 club' (I just made that up, sounds good, huh?).My sons were dx Oct '09 and Nov '10.
It can be hard to advise teenagers at the best of times, and we have found that D can really cramp a guy's style, especially at an age where they are testing out their independance and boundaries.
A turning point came for my 15-next-week son when he met other diabetics - some okder, some his age, and he was kind of normal for a little while.
Which hospital are you at?
I also joined the CWD mailing list, like Northey suggested. It is important for you both to have support while you get used to having D in your lives.
Any help I can be, please ask.
Take care,
Ange
 
Hi Tina, welcome to the forum! 🙂

Would your son benefot from joining the forum as well? I wasn't as young when I was diagnosed but have found it really useful and can ask questions whenever I need to x
 
Hi Tina,

Welcome to the forum - although sorry you have to be here.:(

My son is now 12 and was diagnosed at 10. He was young enough to be able to instill in him good practice and so has a good knowledge of how to manage diabetes and what 'cheating' would do. I think 16 is a tough age (not that any age is good) as a teenager has got used to doing things the same as their friends and this is a crucial time to want to be 'one of the crowd'. If this were my son I would email clinic beforehand and tell them what you have told us - and hope that they can find a way around helping your son. I dont mean by telling him all the 'nasties' - I mean working out a plan that suits him and also takes into account that he has to take it seriously. My son is now on a pump and he can sit and eat snacks if he wants to and just puts the carbs in. We do sometimes have high levels - but nowhere near as high as when on MDI. Alex's HBA1C has gone from 9.6 to 6.8 in just over eighteen months on the pump and he would never give it back - it allows him freedom to do the same as his friends. We also have sensors so this helps with alerting us to night-time lows and highs through the day so it all helps with the HBA1C.🙂Bev
 
Thanks everyone. With everything still being so relatively new, my son is very touchy if anyone mentions diabetes. If he knew I was on this forum he would be very put out. I won't mention yet awhile that he has a look but maybe in a few weeks when things have settled a bit. The timing is awful at it's GCSE year for him at school too and decision time about what to do next year. This has thrown everything into turmoil for him. His confidence has gone through the floor and he really doesn't know what to do next year. He seems to have lost all interest in his school work and future. Saying that, he had a big emotional meltdown early last week at school and since then has been much more open with us.

I think he is just trying to rebel a bit at the moment. He went through a string of hypos a few weeks ago so his lantus was lowered, it settled for a week or so, started again, so his lantus was lowered again, and a third time. Now things seem fairly settled and almost all readings in range. He loves and misses Coke though, feels Diet Coke is a poor substitute. He had a 1.9 at school a couple of weeks ago and had to have more than one 150ml can of Coke to bring him back up, so when he had another 2 point something a couple of days later I got a bit concerned. Looking at his meter, it appears he tested, was 3.4, but didn't treat it. 15 mins later he was 2.9 and then said he needed a larger amount of Coke. I suspect he did that one on purpose. I have at the moment not replaced the Cokes but have orange juice and dextrose tablets in, just to see what happens. I am the bad guy at the moment, and always nagging him I know, but it's hard knowing that I know what's best for him but him not wanting to hear it.
 
He was really sensible to begin with, I guess we were all pretty shocked by it all, despite knowing in advance what the diagnosis was going to be. I very quickly got the hang of carb counting, as did he, and he was very good at testing his level whilst I was cooking, I would tell him the units he needed and he would inject before dinner. Now this past week or so he is either telling me he doesn't need me to tell him how much to have - but he wouldn't have a clue if we are eating something different - and he is also injecting after rather than before dinner. When I tell him he really should inject before he eats he snaps back that it doesn't matter, as long as he does it straight after. If I ever ask what his levels are I get my head bitten off, yet if he is having a hypo it is good old mum he comes to. It's very hard at the moment. I realise I can't control him and all that he does, he is 16 after all, but as a mum I do feel that massive desire to look after him and do everything right.
 
It's not unusual to have quite large changes, particularly in the basal insulin (the lantus) at the start - I was the same, I started on 20 units and it dropped down to 10 units before I got it right. Hypo sensations can vary a great deal, and the effect of them can also affect judgment sometimes, particularly when they go very low (low 2s or below). Sometimes you can feel perfectly fine at 3.4, although I would have a jelly baby or two at that level. I do remember not minding mild hypos too much in the first few months as it meant I could have a sugary treat which I was still craving at that time, so I don't think it is too unusual if he sort of 'welcomes' the opportunity for some full sugar coke. Tastes do change though, so hopefully his will too 🙂
 
He must be in absolute turmoil inside but unable to find anyone or anything to strike against. It can leave a real sense of anger and self-pity that flares up every so often. I've had a period very recently where I just wanted to say 'sod it all' and go back to guesswork and hope.

As for injecting after meals, I often do it and get away with it, providing you're having food that doesn't spike too quickly.

Coke is the best hypo treatment I've found but if he wants a substitute, pepsi max is nice as lng as he doesn't go daft with it. It's zero carbs and calories but does contain caffeine.

Rob
 
Thanks for your comments Northerner and Rob. To be honest, at the age my son is some rebellion is perfectly normal anyway, without diabetes to contend with. He is a good lad and generally we have a good family relationship, he is close to his older sister too. I think he is just sick of everyone asking how he is, me fussing too much and telling him what he should and shouldn't eat, and of course when we go to hospital it's difficult because he hates me saying anything, but he isn't being entirely truthful. I do feel we are doing really well on the whole because almost all of his readings are in range (4-8) but I am confused about certain rules. I know on the first day in hospital we were told there is nothing he can't eat, but has to eat the slow release carbs first then the sweet stuff. It was hard as he came out of hospital on the eve of his 16th birthday, we had bought a load of buffet food in in advance and had fancy desserts and ice creams, then I was telling him he couldn't have any. When the nurse phoned the next day I broke down in tears saying how awful I felt saying he couldn't have any ice cream or anything and she said that was nonsense, he could, in moderation, after slow release carbs. Still for weeks we avoided all sweets and chocolate, but one day I gave in and bought a Mars bar and gave it to him after dinner. Of course he loved it, then the next day come home with a mate and waved a Mars bar under my nose. Of course I heard myself saying 'You can't eat that' so he marched off to the bread bin, grabbed a slice of bread, and said 'Happy now?' and ate that in front of me before unwapping the Mars bar. I dont know, does that matter as long as he injects his insulin with it?
 
At the moment he is being treated by the children's service, and though they are fantastic, I think they are a bit soft with him. I think if they TOLD him he had to do things a certain way, he would, but if I say it, or if I talk about it in front of him, he just says I am nagging and tells me to shut-up! I may ring his nurse this week and share my concerns, particularly about him now injecting after eating, and see if she can bring the subject up in clinic. As long as she doesn't start with 'Your mum phoned and mentioned that.....' of course!
 
The idea is that the slow release carbs also slow the digestion and conversion to glucose in the blood of the sweeter stuff. He should be able to have what he wants, but also bear in mind (as anyone should!) that too much might cause weight gain! Also, it tastes better if it's more of a treat or special occasion. 🙂 As long as you are matching insulin to the carbs, it should be OK, although there are subtleties about injecting that you will learn in time, like trying to match the peak of the insulin to the peak of the food - but don't worry too much about that at this stage.
 
hi tina. im 15 and was diagnosed a few weeks back. i can relate to what you say he is doing and i completely understand how he must be feeling, along with what you are saying. me and my mum keep going through similar things but whenever i get angry i start to cry instead so mum finds me easier to handle than what you must be going through. what area are you in??? if its anywhere local i could try talking to him if you want... of course if you arent or you dont want it then i wouldnt force it on you. i just found it easier to talk to other people my age after meetings than with my dsn or my mum or my friends. best wishes xxx
 
The weight gain is a big worry to us. He was grossly overweight a few months ago but lost loads of weight leading up to diagnosis, and of course was thrilled with his new slimline look. We really thought he would try hard to maintain his new look but he admits food is his big comfort, and just can't stop eating. I buy food in for his lunchboxes, and he eats most of it within 2 days so I have to go out and buy more. Even fruit, he will not stop at 1 orange but eat 3 during an evening. His dietician suggested fizzy diet drinks during the evening as a substitute, but he just drank those and still wanted food. Hopefully with the summer coming up he will go out more in the evenings again and be away from the food cupboards.
 
Emma Jane said:
hi tina. im 15 and was diagnosed a few weeks back. i can relate to what you say he is doing and i completely understand how he must be feeling, along with what you are saying. me and my mum keep going through similar things but whenever i get angry i start to cry instead so mum finds me easier to handle than what you must be going through. what area are you in??? if its anywhere local i could try talking to him if you want... of course if you arent or you dont want it then i wouldnt force it on you. i just found it easier to talk to other people my age after meetings than with my dsn or my mum or my friends. best wishes xxx
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Thanks Emma. No unfortunately we are down south! He knows someone at school with type 1, I know his mum well too, but he isn't interested in talking to anyone else. His school nurse offered to set up a meeting with another older lad at school too but he is anti that at the moment. He has gone out to stay with his friend tonight so hopefully a night away from me will be a nice break for him! I hope you and your mum are getting on ok with it all. It's a lot to take in at first, and I have to say I couldn't believe how much there is to learn. I am boring all my friends with all my new found knowledge!
 
Tina63 said:
The weight gain is a big worry to us. He was grossly overweight a few months ago but lost loads of weight leading up to diagnosis, and of course was thrilled with his new slimline look. We really thought he would try hard to maintain his new look but he admits food is his big comfort, and just can't stop eating. I buy food in for his lunchboxes, and he eats most of it within 2 days so I have to go out and buy more. Even fruit, he will not stop at 1 orange but eat 3 during an evening. His dietician suggested fizzy diet drinks during the evening as a substitute, but he just drank those and still wanted food. Hopefully with the summer coming up he will go out more in the evenings again and be away from the food cupboards.
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i was like that, losing loads of weight since christmas. i was made up but not too sure what was going on. i thought it might be because i was going out more, walking more and drinking loads of water and going to the toilet was making me healthier. now i just use chewing gum, sugar free of course, but that started before my diagnosis because i was always hungry but couldnt always eat because i didnt want to put on weight. the fizzy drinks arent a problem with me coz i always preferred diet and zero to ordinary coke anyway. i can taste the difference but i still like diet the best
 
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