Parent of newly diagnosed type 1 teenager

[Emma Jane]

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

 

[Tina63]

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.

 

[Robster65]

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

 

[Emma Jane]

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

 

[Tina63]

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.......

 

[Tezzz]

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?

 

[CarolK]

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.

 

[Emma Jane]

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

 

[Northerner]

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 🙂

 

[bev]

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

 

[Tina63]

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.

 

[Tina63]

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.

 

[Tina63]

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?

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.

 

[Robster65]

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

 

[bev]

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

 

[Tina63]

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

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.

 

[Witchy Mum]

newly diagnosed, parent

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.
😎

 

[shiv]

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!

 

[Tina63]

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.

 

[Northerner]

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.