# Parent of newly diagnosed type 1 teenager



## Tina63 (Mar 19, 2011)

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?


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## Steff (Mar 19, 2011)

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


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## Andy HB (Mar 19, 2011)

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


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## Northerner (Mar 19, 2011)

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!


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## Robster65 (Mar 19, 2011)

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


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## Tina63 (Mar 19, 2011)

*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.


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## Fandange (Mar 19, 2011)

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


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## teapot8910 (Mar 19, 2011)

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


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## bev (Mar 19, 2011)

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


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## Tina63 (Mar 19, 2011)

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.


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## Tina63 (Mar 19, 2011)

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.


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## Northerner (Mar 19, 2011)

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


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## Robster65 (Mar 19, 2011)

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


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## Tina63 (Mar 19, 2011)

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?


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## Tina63 (Mar 19, 2011)

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!


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## Northerner (Mar 19, 2011)

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.


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## Emma Jane (Mar 19, 2011)

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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## Tina63 (Mar 19, 2011)

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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## Tina63 (Mar 19, 2011)

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



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!


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## Emma Jane (Mar 19, 2011)

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.



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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## Emma Jane (Mar 19, 2011)

Tina63 said:


> 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!



ha ha me too, ive brought all the leaflets and books and things to school with me to show them and all of the non needle/blood phobic ones know how to check my blood and what to do either way. there is a lot to learn but any way i can help i will, just ask xxx


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## Tina63 (Mar 19, 2011)

Thank you Emma Jane.  You sound like you are coping really well.  I do think girls and boys (well males and females of all ages) behave differently with things like this.  I would be really open if it was me and would share everything amongst my friends and family, but my son is really private over it all.  He did inject in front of his friends for a day or two at school but now does it privately.  The same goes for at home too.  For a few days he sat at the dinner table and did it all, but now stays in his room to test and inject.  He doesn't like to talk about it at all.  I just think it would be better if he did.  He has broken down a couple of times and opened up for an hour or so, but the next day he is back to  keeping it all inside again.  I think he has pretty much come to terms with it all, but if I ever say anything like 'well it doesn't seem that bad, you can still do all the things you did before' he does snap back with comments like 'well that shows what little you know.'  Maybe I am being a little flippant, but he does seem on the whole to be taking it in his stride and getting on with it.


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## Robster65 (Mar 19, 2011)

He does sound like he maybe still in the denial stage but as you say, it's a lot to cope with during exam time. The stress will send his BG high too.

If you can get hold of the Ragnar Hanas book Northerner recommended, you'll find most of the advice in there is sound and can act as your bible through the years. Is there any way you can secretly educate any of his mates ?

They'll be the best placed ones to steer him in the right direction but would need to know the correct info.

I can remember being very compliant at that age, but wanting to rebel against it all. It's taken me many years (decades) to properly take responsibility for it but I'm still here with all my faculties so I'm sure he'll come round when he's ready.

Rob


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## Emma Jane (Mar 19, 2011)

Tina63 said:


> Thank you Emma Jane.  You sound like you are coping really well.  I do think girls and boys (well males and females of all ages) behave differently with things like this.  I would be really open if it was me and would share everything amongst my friends and family, but my son is really private over it all.  He did inject in front of his friends for a day or two at school but now does it privately.  The same goes for at home too.  For a few days he sat at the dinner table and did it all, but now stays in his room to test and inject.  He doesn't like to talk about it at all.  I just think it would be better if he did.  He has broken down a couple of times and opened up for an hour or so, but the next day he is back to  keeping it all inside again.  I think he has pretty much come to terms with it all, but if I ever say anything like 'well it doesn't seem that bad, you can still do all the things you did before' he does snap back with comments like 'well that shows what little you know.'  Maybe I am being a little flippant, but he does seem on the whole to be taking it in his stride and getting on with it.



i think it may just be that he has a harder time opening up to people than me. it does seem harder for boys to talk about personal things than girls in general so maybe he just needs someone to talk to who isnt embarrased to say how they feel. if i were there i would try to talk to him but im so sorry because i cant. if someone he knows, more like a friend than a mum sorry, broke down and cried and moaned to him first then maybe he would feel less alone and open up to them. i know i would but i dont reallt know him so i cant really say sorry xxx


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## Tina63 (Mar 19, 2011)

Thanks Rob. I will get hold of the book.  At the moment I feel I want to learn all there is to know, but I know it goes on and on and on!
His best friend does know someone else with type 1 so was quite knowledgeable before our bombshell, so that is good.  He is coming away with us on holiday in a few weeks so will get to see 24 hours a day what goes on, though he does spend a lot of time here already!  One of my other big concerns is that my son refuses to even consider wearing any form of id concerning his condition and it does worry me in case he collapses away from us at any time.  He did have a 1.9 at school a couple of weeks ago yet was still able to function and take himself over to the nurse.  I assumed at that level he would be unconscious.  He used to have bad symptoms at 3.9, so was shocked he got so low.  We have not been aware of any overnight hypos either yet, and that worries me, will we be aware when one is happening?  I feel like I know loads, yet so little.  It's mindblowing just how involved the whole thing is.  Despite all my rantings on here, I think we are doing really well with it so far, I just fear the rebellion that I feel we are on the brink of right now.  Oh well.......


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## Tezzz (Mar 19, 2011)

Hi Tina,

I miss lots of things since I've got *D*. I can sympathise with your son.

Is he *Crying Wolf*?

I think it's not wise to have a hypo just to have real Coke. Blood Glucose readings could yo-yo. I believe it would be better to go along the 'covering' route than the  sneaky hypos. 

Do you know how much fast acting insulin would your son need to inject to allow him to drink a whole can of Coke? Does he know? I bet the DSN would work it out if you asked nicely. 

One thought about his appetite - what about low carbohydrate snacks? Low carb veg with his evening meal to fill him up?


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## CarolK (Mar 20, 2011)

hi tina,
My son was 14 when diagnosed,(hes now 22) and everything you have written regarding your son  could have been me writing about mine. I seemed to spend years nagging and gettin g told to be quiet, which was awful when I was going through it, but like you I just kept thinking it was in his best interest and one day he would thank me. We arent at the stage where hes thanking me yet, but I do like to think that all my nagging has made a difference to his control, in that he learnt he had to test and carb count and everything else. In the early days he never used to test or moniter anything, and I m sure this led to the few scary hypos he had. I dont have any magic formula , but  just to say keep on looking after him the way you are.


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## Emma Jane (Mar 20, 2011)

him rebelling is something i completely understand. he probably just feels like he needs someone to turn against, i feel exactly the same. i just want someone to blame and i dont have anyone. he could just be using you as this because you keep reminding him. i know its not your fault and i know you only have his best interests at heart and im not telling you to stop nagging him to do what hes supposed to. im only trying to help you understand what might be going through his head. as im only a year younger than youve said he is i think i might be able to relate better than a lot of people. not saying that no one else can help, they helped me loads, im only trying to do what little i can to help too xxx


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## Northerner (Mar 20, 2011)

Emma Jane said:


> him rebelling is something i completely understand. he probably just feels like he needs someone to turn against, i feel exactly the same. i just want someone to blame and i dont have anyone. he could just be using you as this because you keep reminding him. i know its not your fault and i know you only have his best interests at heart and im not telling you to stop nagging him to do what hes supposed to. im only trying to help you understand what might be going through his head. as im only a year younger than youve said he is i think i might be able to relate better than a lot of people. not saying that no one else can help, they helped me loads, im only trying to do what little i can to help too xxx



Just wanted to say thank you for all your input Emma Jane, it is very useful for people to hear things from your perspective


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## bev (Mar 20, 2011)

Tina63 said:


> Thanks Rob. I will get hold of the book.  At the moment I feel I want to learn all there is to know, but I know it goes on and on and on!
> His best friend does know someone else with type 1 so was quite knowledgeable before our bombshell, so that is good.  He is coming away with us on holiday in a few weeks so will get to see 24 hours a day what goes on, though he does spend a lot of time here already!  One of my other big concerns is that my son refuses to even consider wearing any form of id concerning his condition and it does worry me in case he collapses away from us at any time.  He did have a 1.9 at school a couple of weeks ago yet was still able to function and take himself over to the nurse.  I assumed at that level he would be unconscious.  He used to have bad symptoms at 3.9, so was shocked he got so low.  We have not been aware of any overnight hypos either yet, and that worries me, will we be aware when one is happening?  I feel like I know loads, yet so little.  It's mindblowing just how involved the whole thing is.  Despite all my rantings on here, I think we are doing really well with it so far, I just fear the rebellion that I feel we are on the brink of right now.  Oh well.......




Hi Tina,

I asked our old team whether to test during the night in case of night-time hypo's and they told me that a child will always wake. However, I have since learnt that they dont always wake and so we do a midnight and 3am check as this is the time when the body's levels naturally drop. I know it may be difficult for you to test your son at his age - but perhaps you could set an alarm and prompt him to test.Bev


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## Tina63 (Mar 21, 2011)

CarolK said:


> hi tina,
> My son was 14 when diagnosed,(hes now 22) and everything you have written regarding your son  could have been me writing about mine. I seemed to spend years nagging and gettin g told to be quiet, which was awful when I was going through it, but like you I just kept thinking it was in his best interest and one day he would thank me. We arent at the stage where hes thanking me yet, but I do like to think that all my nagging has made a difference to his control, in that he learnt he had to test and carb count and everything else. In the early days he never used to test or moniter anything, and I m sure this led to the few scary hypos he had. I dont have any magic formula , but  just to say keep on looking after him the way you are.



Thank you very much for this Carol.  It's good to hear from someone who knows where I am coming from.  Had he been diagnosed much younger I guess my 'control' would have been greater and he wouldn't question it so much.  He is a good lad really, never been in any sort of bother, so seeing some rebellion is hard.  This weekend he has stayed away at a friend's house overnight with two other lads too.  Having looked at his monitor this morning he has only tested twice each day, was really high last night (well not really high, but 9.8 is high for him these days) but of course I have no idea what he ate or whether he took insulin on board or not.  He would go mad if I questioned him so I leave well alone.  I just have to trust him.  He does know the carb count of most of our regular food already, but of course when you are out guesswork has to take over.  I suspect too in a social situation like that he didn't want to test or inject more than he could get away with.  I do understand, yet I guess still get frustrated that he won't follow the rules.  I suppose that as his levels are really quite stable most of the time, I should be grateful for that at least.  At the end of the day, we are still less than 3 months into it, so keeping things pretty much in the 4-8 range isn't bad at all.


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## Tina63 (Mar 21, 2011)

bev said:


> Hi Tina,
> 
> I asked our old team whether to test during the night in case of night-time hypo's and they told me that a child will always wake. However, I have since learnt that they dont always wake and so we do a midnight and 3am check as this is the time when the body's levels naturally drop. I know it may be difficult for you to test your son at his age - but perhaps you could set an alarm and prompt him to test.Bev



We have never been told to test at night-time.  Even in hospital they left him from about 10pm to 6am.  As he has been fine so far at night, I am not inclined to start waking him twice a night just in case, but I will discuss it at our clinic appointment next week.  My friend said she always hears her son if he has one at night, he thrashes about.


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## Tina63 (Mar 21, 2011)

brightontez said:


> Hi Tina,
> 
> I miss lots of things since I've got *D*. I can sympathise with your son.
> 
> ...



Thanks for you input.  Unfortunately I don't really want him to think he can drink ordinary Coke but just take insulin on board for it, because he is a hefty lad, pilling weight back on at an alarming rate, so I don't want to add to that with the sugary stuff.  Plus, the way he is, he would help himself to all the Coke I keep in for hypos.  He does that with the cereal bars I keep in, so I have had to hide some around the house so I can put my hands on one if I need it quickly.  He really is a massive eater, nothing seems to satisfy him, and picking during the evening is just a really bad habit he has got into.  He turns his nose up at things like veggie sticks, we have been through this with the dietician.  I have started purposely running low on things like crisps that I put in his lunchbox as he just picks and picks and picks.  He eats a phoenominal amount each day.  If I put vegetables on his plate at mealtimes he is picky about which ones he will eat, but i have started cutting down the meat and upping the vegetable content of things like chillis and bolognese sauces and piling his plate up with that.  I don't think it's so much hunger as it is bad habits.  He lots loads of weight before diagnosis, and needed to put a bit on, but he is already allowing his weight to spiral out of control.  He gets so angry if there is nothing 'nice' as he calls it in the house.  I know I have to ride the storm, be cruel to be kind, but he very inactive, sits on his computer all day/evening long when not at school.  Hopefully with the ligher evenings just around the corner he will spend more time out with his mates in the evenings from now on.


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## Robster65 (Mar 21, 2011)

Hi Tina

Fortunately, his BGs all sound good. Even the 9.8 is not as bad as it could be and in the short term, shouldn't cause him any damage as long as it's coming down again.

I'm sure his eyes will be fully opened by someone soon, but it'll need to be someone outside of the family, I suspect.

I don't suppose he'd consider any sort of counselling, even if the nurse suggested it ?

He could do with getting some of that anger and frustration out by the sound of it.

Rob


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## bev (Mar 21, 2011)

http://www.childrenwithdiabetes.com/activities/uk2010/

Hi Tina,

We went to this conference last year and it was amazing. There is another one this year and it is not too late to put your name down. There are lots of teens there and a wonderful talker called 'Jo Solo' who is a 50 year old type 1 diabetic from New York who counsels teenagers and their families and has seen it all before - all the excuses about secret eating, not wanting to test, denial, the whole lot - and the way he deals with it all is amazing. The teens leave there actually *wanting* to test and look after their diabetes - because they are motivated by the whole weekend and meeting others. I know that lots of them meet up via Facebook and have made life-long friends. They all actively want to go back each year because they love it.Bev


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## Tina63 (Mar 21, 2011)

Robster65 said:


> Hi Tina
> 
> Fortunately, his BGs all sound good. Even the 9.8 is not as bad as it could be and in the short term, shouldn't cause him any damage as long as it's coming down again.
> 
> ...



Thanks for that Rob.  He was having a bad time dealing with it at school a few weeks ago and spending a lot of time in with the school nurse.  Fortunately she was someone he could open up and talk to about it, but it was getting so that he was going to see her everyday, leaving class after class either having a hypo or some other issue.  Our school nurse consulted with his DSN and between them they are meant to be sorting some counselling at school.  I am all for this.  He was having persistent diarrhoea which they all put down to stress/anxiety, especially as it was only evident Monday to Friday.  He was regularly leaving classes and sitting with the nurse.  He was also going through spells of hypos, which each time have been sorted by his DSN dropping his Lantus units.  Obviously in the honeymoon period at the moment.  Things are much more stable this past couple of weeks hypo wise and since his big meltdown at school 2 or 3 weeks ago he is staying in class much more and actively avoiding his school nurse!  I actually take all that as a good sign.  He does talk to me when he is in the mood, but obviously at the moment feels everything is diabetes, diabetes, diabetes.  Even when we get together with family it's the first thing anyone talks about.


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## Witchy Mum (Mar 21, 2011)

*newly diagnosed, parent*



Tina63 said:


> 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.



My 15 yr old daughter is recently diagnosed, we have her levels stable now, but emotionally she has meltdowns, life is soooo unfair etc.,  Before diagnosis she was a drama queen where a spot was a tumor!! Now she has an excuse.  After her last blow out, I told her to check out this website, if she wanted, but why ask for hel when drama is better!! But eventually she had a look and encouraged me to join.  Maybe if you leave the home page on your computer he might just get nosey and have a look.  My daughters first hyper was when her brother was ill and she was stressed, the way she described it to me sounded like a really bad hangover, so being the nice mum I am, I told her to remember this bad feeling and it doesn#t just disappear once you have taken insulin and try not to get so stressed or abuse her condition!!  So far so good, but it is early days.   Hope we can help, I have ranged to being the best mum in the world to what's childlines number?!! But that's just teenagers.


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## shiv (Mar 21, 2011)

Tina63 said:


> We have never been told to test at night-time.  Even in hospital they left him from about 10pm to 6am.  As he has been fine so far at night, I am not inclined to start waking him twice a night just in case, but I will discuss it at our clinic appointment next week.  My friend said she always hears her son if he has one at night, he thrashes about.



Lots of clinics won't advocate night time testing, but a lot of people think it's a good idea to do it every now and again to make sure that his levels are stable through the night (for example - he's not hypoing and then rising, etc). It's really important to remember that every child is different (and every adult for that matter ) - so some children will thrash about when hypo at night, others will have no signs or symptoms at all and the only way you know is by testing. I have never thrashed around during a night time hypo - I tend to wake up drenched in sweat, clenching my teeth!


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## Tina63 (Mar 21, 2011)

No medical staff have ever talked to us about night time hypos.  So do I gather if you have them but don't treat them your body will take over and right itself anyway?  In the early weeks I could barely sleep wondering if I would go in and find him unconscious in the morning.  He has had a couple of mornings (not recently) waking drenched in sweat.  I couldn't explain that any time but his morning levels were ok then.  This morning his whole room smelt like it did pre-diagnosis which would suggest being hyper to me, but I can never get a sensible reply if I ask what his morning levels are, I can only sneak a look at his monitor when he is in the shower.  Knowing he was 9.8 last night (that is high for him) I imagine that was the cause of the smell.


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## Northerner (Mar 21, 2011)

Tina63 said:


> No medical staff have ever talked to us about night time hypos.  So do I gather if you have them but don't treat them your body will take over and right itself anyway?  In the early weeks I could barely sleep wondering if I would go in and find him unconscious in the morning.  He has had a couple of mornings (not recently) waking drenched in sweat.  I couldn't explain that any time but his morning levels were ok then.  This morning his whole room smelt like it did pre-diagnosis which would suggest being hyper to me, but I can never get a sensible reply if I ask what his morning levels are, I can only sneak a look at his monitor when he is in the shower.  Knowing he was 9.8 last night (that is high for him) I imagine that was the cause of the smell.



I've always been fortunate to wake up in the night, never being quite sure why, but testing and finding my levels are low. People don't always wake up though. It's important to always have a testing kit and some fast-acting sugar (coke, jelly babies etc.) readily to hand - if you wake and aren't sure, then test. It's particularly tricky when first diagnosed because the basal insulin dose may well be set at too high a level - mine was initially 20 units of lantus, now it's only 5! What happens is that on most occasions the liver responds when levels drop very low and releases some extra glucose. This can result in higher than expected levels on waking, and also the feeling of being hungover - if you don't wake but these indications are there it's probable that you had a hypo.

It's worth doing the occasional test when circumstances are unusual - for example if you've been particularly active during the day, or if you have noticed that you are waking lower in the mornings - might indicate that basal needs to be lowered.


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## bev (Mar 21, 2011)

Tina63 said:


> No medical staff have ever talked to us about night time hypos.  So do I gather if you have them but don't treat them your body will take over and right itself anyway?  In the early weeks I could barely sleep wondering if I would go in and find him unconscious in the morning.  He has had a couple of mornings (not recently) waking drenched in sweat.  I couldn't explain that any time but his morning levels were ok then.  This morning his whole room smelt like it did pre-diagnosis which would suggest being hyper to me, but I can never get a sensible reply if I ask what his morning levels are, I can only sneak a look at his monitor when he is in the shower.  Knowing he was 9.8 last night (that is high for him) I imagine that was the cause of the smell.



Hi Tina,

There have been many studies that suggest that unfortunately the liver does not always kick in when you are hypo. This has been done using sensors and shown that most do not wake when hypo. Before I used to test in the night I was also of the opinion that as long as the level was allright before going to bed then it would stay that way - but since testing I have found many hypo's and hyper's which can be caused by things like more exercise than usual or a particular food which has spiked or carb count gone wrong. General illness can also cause either high or low levels. Perhaps you could try testing one night per week to begin with and make a decision from there.Bev


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## CarolK (Mar 22, 2011)

Regarding the night time hypo situation. I was always told in the beginning that my son would wake when hypo, but unfortunately that was not the case. I am not writing this to scare anyone, just to bring an awareness about it.  My son has had 2 really bad hypos, both in the night, where he has actually fitted and one where he was asleep and I think we had just caught him before he fitted, he was jerking and not aware of anything. It is important that we try to put it into perspective ( I have been down the road of not being able to sleep with worry incase anything happens in the night, with bells on !). The only thing I try and do now, although my son is no longer a teenager, is make sure he always test before bed (all that nagging has paid off in some respects) and always has a snack to see him through , especially after hes been out and maybe had a drink. I still go in every morning , I dont care how old he is, and make sure hes ok  and get him to test. Its alos peace or mind for me. It is unfair Tina, my son like yours is such a nice lad, and without the diabetes Im sure would have been a dream, The main source of conflict for us is and always was managing diabetes.


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## Natalie123 (Mar 22, 2011)

Hi Tina, welcome! I was diagnosed when I was 16 too and can understand how he is feeling. I went through a stage of denial hoping it would all go away, I also thought that when I had lots of hypos this was a good thing. When I started working after school and I felt low I would just ignore it as I thought it meant I could have more for dinner! I soon got fed up with the hypo symptoms and stopped doing this on my own - I'm not sure my parents even knew - I didn't like talking about it. 

My parents were always very careful of what they fed me and I would just do as I was told because I didn't want to upset my Mum. I didn't eat any cake, chocolate, crisps etc until I went to uni. 

When I then went to uni I think I rebelled against it a lot. I went out drinking and ate badly for the first year. I am now 23 and am really starting to realise how important it is to be more careful and motivate myself to eat well now that there is no one to nag me- it is a real battle for me! I have to admit that I do still get angry when my Mum tells me what to eat and what not to eat - sometimes she gets it wrong (a lot has changed in the 5 years since I left home) but most of the time I just don't like to admit that I am wrong. 

Good luck with everything and I hope sometime soon he will want to join a forum or support group like this as it has made so much difference to me


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## Robster65 (Mar 22, 2011)

Hi Carol.

TO give you some peace of mind, I used to fit sometimes when I didn't wake or catch it in time but haven't done so for years and always wake nowadays.

It may be something your brain has to get tuned into but I'm sure your son will find he wakes now and/or in the future. My parents used to insist I slept with my door ajar so they could hear me. It was awful at the time but I understood why and we're all friends still 

They had terrible guilt about me developing diabetes (quite why I'm not entirely sure but they did and do) and this pushed much of their nagging behaviour but I'm sure all teens can understand why, even if they resent it and kick against it. If they don't understand, maybe a carefully worded letter to explain that they can digest in their own time would be justified.

Rob


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## Persil (Mar 22, 2011)

Hi Tina!

Welcome to the forum. I'm 18 and was diagnosed with type 1 when I was 17. If your son ever want to vent about anything, I'm more than happy to give you my email address to pass on to him. 

Hope everything is well!

Vicki  
xxx


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## chrismbee (Mar 22, 2011)

Well, Tina - let me start by saying a big "HI" and welcome to the forum 

This has got to be the biggest "newbie" thread I've seen, since joining!  You sound like you're being pushed to the limit of parental love by your son, at the mo 

I was diagnosed at 18, just before A-levels, but consider myself very lucky (and my mum, consequently) in that I took it all very much in my stride; I s'pose it helped that I was scientific by nature, so diabetes was just like a new experiment to play with.
Having said that, I know that mum took the diagnosis far harder than I ever did and used to worry like mad about me - but then, that is what us parents do, innit?  Difference is that I looked after myself - she was on the sidelines, left only to do the worrying!  Things don't change, either - enquiries about my health and diabetes still open every conversation with her, nearly 30 years later. 
I fully understand the point you made about him not testing for fear of the result; I spent much of my late 20's and 30's in a similar "testing phobia".  Problem is, the diabetes won't go away, however much you rebel or show off and it will lead to complications in later life that were completely avoidable.  I have some complications myself, albeit quite minor, but I wish I could turn back the clock and get a grip with myself.
It is a big mental hurdle to jump, but your son must learn to be ruthlessly honest with himself, regards testing (frequency as well as usefulness) and his general control - it is HE that will suffer if he doesn't.

On the one hand, as parents we have the benefit of having been a teenager ourselves and can think back fondly on how we behaved at that time; on the other, today's teenagers do exist in quite a different world from the one we lived in, bringing with it a new set of pressures. I can only wish you the best of luck in "helping" your son come to terms with it all.

Cheers,
Chris.


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## Tina63 (Mar 23, 2011)

Thanks again everyone for your replies.  It's good to hear from both parents and you young (and not so young) adults who have survived the parental nagging!  The really good thing for me at the moment is to hear that there is hope for life beyond tomorrow.  My son is on the brink of his GCSEs and was planning to go to college for his A levels.  His confidence is now shattered and I think he will probably stay on at the school where he is at present.  I am not sure in the long run that that is the right place for him academically, but of course his personal security and all feelings of familiarity are so important to him right now, so that's where I think he will remain.  He was a few months ago talking of uni as part of his future, right now he can't even think about tomorrow.  He was all for going to college in September, but now the thought of going and meeting a whole new bunch of people in a whole new environment has really unsettled him.  He has lost all his self-confidence.  I do fear he may just want to 'drop out' as he can't cope with anything else stressful in his life right now, but he does seem on the whole to be settling down a bit.  He has just popped out on his bike to spend some time with his mates so I take that all as a good sign. Fingers crossed.


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## Robster65 (Mar 23, 2011)

I wonder if mentioning a few role models might help ?

I can only think of Sir Steve Redgrave at the moment, but there is a long list somewhere if you google for it, including a few musicians. Just to illustrate that it doesnt stop people dead in their tracks and that it's not just the unlucky ones who develop it. Some of us are very special cool:). 

Does/did he have any or interests that he feels are now impossible ?

There are a couple of threads on here about what everyone does for a living, etc which covers a wide spectrum. 

Rob


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## Estellaa (Mar 24, 2011)

Hi there Tina, i'm 16 and on the exact same medication as your son.
i was diagnosed when i was 6 but i have a fair few experience with it so if he has any problems i would be more than welcome to speak to him i have facebook and msn if he would like a chat.
as for the testing before bed i must say i don't do that and for the snacking in the evening i also do the same and not give insulin most of the time but i'm trying to how do you say ween myself off the snacks.
must be really strange at his age to suddenly have this and i'm sure its all a bit hectic round yours at the moment.
i wish you all well, here if you need help


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## Tina63 (Mar 24, 2011)

Robster65 said:


> I wonder if mentioning a few role models might help ?
> 
> I can only think of Sir Steve Redgrave at the moment, but there is a long list somewhere if you google for it, including a few musicians. Just to illustrate that it doesnt stop people dead in their tracks and that it's not just the unlucky ones who develop it. Some of us are very special cool:).
> 
> ...



Haha Rob!  
If we heard the name Steve Redgrave mentioned a dozen times in the first 48hours of my son's diagnosis I wouldn't be lying!  Everyone mentioned him!  Actually, i have found it interesting that there seems dispute over whether he is type 1 or type 2.  My understanding is that he is actually type 2 but chose to inject insulin so he could eat the massive carb meals needed to sustain him through his training and races - hey what do I know???
Sadly my son is a child of his time - a computer geek, never off the damn thing, so exercise is pretty alien to him.  Saying that, with the better weather now he is venturing out a bit more during the evenings and weekends.  He went out last night on his bike, but within 15 minutes had a hypo, his second of the day.  He seems to go through spells of hypos, then his lantus gets dropped.  He has been pretty stable for about 3 weeks since the last reduction in dose, now we have had 3 days in a row with hypos (not all after cycling I must add) so I suspect it may be lowered again at hospital next week.  We will just have to wait and see.  I am still learning so much, but feel I have a good grip on the general stuff now, we are going through correction doses on our next appointment.
We are going on a mini break over Easter, taking a mate, taking in a theme park, just to show him life really does go on as normal.  Mind you, since we booked it I really do think he has settled down a lot.  We managed to have a really nice chat about the dreaded D last night, I think entering the domain of his room, showing an interest in his computer was the right way to get me accepted, then he was very open to talking for once.  Even on the way home from his first clinic appointment (4 weeks after diagnosis) we made a point of stopping for a meal out on the way home, just to show it's not a problem.  He is cool with all that now, dealing fine with it.  
Thanks as always for your input, it really is appreciated.  
Tina


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## bev (Mar 24, 2011)

Hi Tina,

How does your son deal with exercise. I am just wondering about the bike riding - because we used to find this difficult to cope with in the early days - but soon realised that Alex needed a huge amount of 'free carbs' before setting off. Now, we just decrease his insulin on his pump to 50% to avoid hypo's.Bev


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## CarolK (Mar 24, 2011)

Hi Tina, as a matter of interest, NOT relating to D, what computer games does your son go on. My son is still heavily into X box etc, and is quite well known on them. It has given him the opportunity to travel to USA, China, Germany etc and his Diabetes hasnt held him back.


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