Teens and not wanting to do their stuff

[Thebearcametoo]

My kid is now 14 and has had T1D since he was 8. We’ve had our ups and downs as is expected. He’s had a few months of really not wanting to engage. Taking forever to replace his pump and/or sensor. Running high a lot especially if he’s been really late putting the new cannula on. He’s missed clinics since June because he didn’t want to go. All the usual fed up ness of having a chronic condition.

My approach is to not push as long as there is some insulin going in at some point and I get some sleep at some point. If you were to look at a lot of his numbers you’d be horrified. A lot of time in the high teens and a fair bit that just shows as HIGH on the Dexcom. When he’s looping happily his hba1c is really low (mid 30s is common). He went to clinic today and was a bit apprehensive about what they would say (they are always lovely and they get how hard it is) and we were taking bets on his hba1c. I guessed 47. It was 48. So even with lots of time well out of range he’s hit the target hba1c.

I hope this gives anyone who is stressing some reassurance.

The team were great and he really engaged and is coming up with some coping mechanisms and things to change that might make it easier. He saw the team psychologist and was chatty (he often just shrugs) and will see her again in a couple of weeks. I’m sure it will still be a drudge to do it all but it’s lovely to see him engage.

 

[trophywench]

I'm very pleased to hear what you've just told us! There are definitely times when we can so easily be our own worst enemy though I didn't find out about me doing just that until well into my adulthood when it was - mostly - too late to rectify.

Because I'm now 'of that age' when some of my peers are shuffling off their mortal coils I have recently been reflecting about my past more than I usually like to do. It is true though that I can recall such things clearly whereas I have no idea what the weather was like yesterday, and hardly ever know what day it is when I get out of bed! I usually remember why I've gone in the kitchen though, so I don't think I'm completely gaga as yet. Hope not, anyway 😉

 

[SimonP]

It's interesting reading about teenagers not wanting to treat their diabetes and I'm curious as to how prevalent this is. I'm guessing at least part of this is down to someone's personality. I am probably quite weird but never had these issues - I wasn't particularly happy about being diabetic, but I never stopped treating it, nor did I see hurting myself as a method pf rebelling. I was away at boarding school from 11, which may or may not have helped - there was no-one telling me to do anything regarding my diabetes (so I guess that removes one rebellion method), it was my responsibility (with backup/remote help from my parents and really good support from the staff and medical centre and my friends at school if I asked for it.)

I used to hate going to the clinic too, mainly as I didn't really want to have blood taken, and knew I'd be chided for running too low (low HbA1C), though the paediatric clinic seemed pretty good and this was once I moved to the teenager/adult clinic path. I would also be told not to eat any sugar (dieticians, where is my voodoo doll....) despite having just been told off because my HbA1C was too low. Seemed like a complete waste of time.

As I said above, I may well just be odd in that I didn't rebel and refuse to treat my diabetes, but I'm curious to know whether there are others like me! 🙂

 

[helli]

I was diagnosed with diabetes as an adult so didn’t have the teenage non-compliance stage.
The closest experience I had was wearing a brace for my teeth. At first I was fully compliant. Probably because I disliked my buck teeth so much.
However, over time, as my teeth straightened out, I started to dislike the discomfort and “being different” more and more. I would take my brace out when I left home to go to school.
Then, my brace was “downgraded” to a night time only brace. I never wore it - it would be taken out of the bathroom when I cleaned my teeth and placed under my pillow.
Straight teeth are not as important as BG levels but to some extent, I understand the teenage desire to not stand out too much (or to be able to chose when to be different).

 

[Thebearcametoo]

Everyone’s different. My kid is stubborn and HATES having to do anything whereas his brother likes clear rules and boundaries. Add in teenage issues around bodies and bodily autonomy and it’s difficult for him sometimes. I know it doesn’t last forever though so and he’s in a better patch at the moment but then I also know that he’ll have rough days again.

 

[SimonP]

First of all, sorry I have lead the thread off course, if a mod wants to break my posts out elsewhere then please feel free to do so.

I was diagnosed with diabetes as an adult so didn’t have the teenage non-compliance stage.
The closest experience I had was wearing a brace for my teeth. At first I was fully compliant. Probably because I disliked my buck teeth so much.
However, over time, as my teeth straightened out, I started to dislike the discomfort and “being different” more and more. I would take my brace out when I left home to go to school.
Then, my brace was “downgraded” to a night time only brace. I never wore it - it would be taken out of the bathroom when I cleaned my teeth and placed under my pillow.
Straight teeth are not as important as BG levels but to some extent, I understand the teenage desire to not stand out too much (or to be able to chose when to be different).

I had standard (I guess) teenage non-compliance with other things (drinking, late nights, late mornings, going where and doing things you're not supposed to, etc), though I guess that most of the time I was at school, so it wasn't my parents' rules I was breaking, so this very rarely manifested in arguments with them. For bigger picture stuff I tended to see the logic of what they were trying to tell me and tended to agree with it as it made sense. I must admit my school rebelliousness was also not very extreme - I would always (and still do - personality I guess) determine the cost-benefit to decide whether it was worth breaking a given rule, though I am certainly reasonably non-conformist these days (though again, cost-benefit still comes into it!)

I understand the "not standing out" thing, but I never really found being diabetic made me stand out. Though perhaps it's just that I did stand out but not in what I considered a bad way - in order to make life work at school I was allowed to do things that perhaps were seen as advantages rather than a negative difference - e.g. I could jump the queue to the refectory if I was running low; I had a key to get into one of the adult-only areas where my insulin and emergency snacks were stored; could go back to the dorm to get food from my tuckbox if I needed it; had snacks by the side of the rugby pitch, etc.

I'd never really thought about it before, but perhaps those advantageous factors, which were effectively allowing me to break the school rules which other pupils had to obey, and with diabetes not being involved with anything/anyone I might want to rebel against (it would have had to be me rebelling against myself), the diabetes and its treatment just remained a thing to do in the background while getting on with teenage (and the rest of) life.

 

[Sally71]

I think I’ve been very lucky that my daughter is not a rebellious type and has always just got on with it where her diabetes is concerned. I think a lot of it comes down to personality. She certainly didn’t like being different, but not looking after her diabetes never seemed to be an issue, whether she was frightened of what might happen to her I don’t know. She was diagnosed at 6 years old and can’t now remember not having diabetes, so it’s just a part of life for her. We did have an issue in the early days that a cannula insertion went wrong and the only way I could get it off again was by inflicting pain; understandably that put her off for a while and we had to chase her around the house to get cannula changes done, until about 4 months later it suddenly dawned on her that the whole procedure would be a lot less unpleasant if she just let us get it over and done with quickly, and since then we haven’t looked back. At the time taking a pump break didn’t seem like an option, so we just carried on trying to persevere until she got over the problem!
At 15 she was diagnosed as being on the autism spectrum and since then has developed some other problems, one of which renders her unable to walk at the moment and she is in a wheelchair. So she’s different in many ways now but seems to just embrace it and get on with life as best she can. Have to say, I’m proud of her!

 

[Ivostas66]

I've taught quite a few diabetics over the past 20 or so years. Apart from one, they were all pretty much on top of things. One struggled a bit with silly comments from other students and stares from a boy whenever she checked her pump, one who would sometimes use his condition to his advantage - when I was called to his classroom on patrol once he was standing on the corridor, saw me, smiled "Alright sir, bloods a bit high so I've come out". I took out my phone "So am I, 9.4, let's compare". Another big smile from him. "Nah...it's alright sir. I'm about 6. I just needed to step out otherwise I'd say something I shouldn't to him [teacher]. He's a t***."

Only issue was a lad whose Mum demanded that as part of his health care plan, the teacher on behaviour call went to his room EVERY LESSON, checked his readings and asked him when he had last injected. I objected and told the SENCO that this would just create animosity towards staff and maybe towards his mother, "Will she be ringing his boss in a few years to check it when he's at work? She's just going to create a wedge in their relationship!" But school were adamant. On the rare occasion that there was something happening elsewhere in the school that kept someone away from this highly important task, his Mum would call the school - she even told him to keep a record of any lessons when they had not turned up and would email the SENCO with a weekly tally. By Year 10, his control had really declined. His Mum now had access to his levels remotely and would call reception to go and find her son if his levels were above 10. This led to worsening control and him hiding/ not turning up to lessons. We had a chat about the disease once when I was on behaviour call (his levels were high so I took him for a drink of water and a stroll around the school) we agreed that we hated the disease, but then as an aside he muttered "but I hate my Mum more". Passed it on, lots of meetings and low and behold, by Y11 no more behaviour calls required to check his levels, calls to school were very rare and his control improved significantly.

 

[everydayupsanddowns]

I hope this gives anyone who is stressing some reassurance.

The team were great and he really engaged and is coming up with some coping mechanisms and things to change that might make it easier. He saw the team psychologist and was chatty (he often just shrugs) and will see her again in a couple of weeks. I’m sure it will still be a drudge to do it all but it’s lovely to see him engage.

What a lovely post to read @Thebearcametoo

Sounds like he is doing amazingly well.

I think it’s perfectly natural to go through sticky patches every so often with a condition as relentless and demanding as T1.

Lovely to hear about the support he has received, and that he’s been able to engage with it

 

[stable1]

My kid is now 14 and has had T1D since he was 8. We’ve had our ups and downs as is expected. He’s had a few months of really not wanting to engage. Taking forever to replace his pump and/or sensor. Running high a lot especially if he’s been really late putting the new cannula on. He’s missed clinics since June because he didn’t want to go. All the usual fed up ness of having a chronic condition.

My approach is to not push as long as there is some insulin going in at some point and I get some sleep at some point. If you were to look at a lot of his numbers you’d be horrified. A lot of time in the high teens and a fair bit that just shows as HIGH on the Dexcom. When he’s looping happily his hba1c is really low (mid 30s is common). He went to clinic today and was a bit apprehensive about what they would say (they are always lovely and they get how hard it is) and we were taking bets on his hba1c. I guessed 47. It was 48. So even with lots of time well out of range he’s hit the target hba1c.

I hope this gives anyone who is stressing some reassurance.

The team were great and he really engaged and is coming up with some coping mechanisms and things to change that might make it easier. He saw the team psychologist and was chatty (he often just shrugs) and will see her again in a couple of weeks. I’m sure it will still be a drudge to do it all but it’s lovely to see him engage.

New to the forum, but not new to DM, my son is now 12, type 1 dm since age 9. We are finding it really really hard these last few months. Often not giving insulin esp when at school, but also at home. Says he forgets but I don't think so, he just sort of doesn't want to know he has diabetes in a way I think. He ignores alarms and stuff. Very difficult balance between hassling him to do it and giving him responsibility for it. I really worry that he's just going to totally disengage and we are going to have to do more and ultimately that's counterproductive. Doesn't help that I'm a Dr tbh..

 

[Thebearcametoo]

New to the forum, but not new to DM, my son is now 12, type 1 dm since age 9. We are finding it really really hard these last few months. Often not giving insulin esp when at school, but also at home. Says he forgets but I don't think so, he just sort of doesn't want to know he has diabetes in a way I think. He ignores alarms and stuff. Very difficult balance between hassling him to do it and giving him responsibility for it. I really worry that he's just going to totally disengage and we are going to have to do more and ultimately that's counterproductive. Doesn't help that I'm a Dr tbh..

It’s difficult isn’t it. And I’m sure it’s hard being a doctor and being unable to help your ‘patient’.

We’re in a good phase again where he’s happier to do his pump changes more quickly and is generally less fed up inf diabetes.

We have had a couple of sessions with the team psychologist and were reverted to helping him more after he had been more independent. Not just with diabetes but general things around the house to take some of the burden from him.

Is there anything we can do to brainstorm ways to make things easier for him? And has he chosen not to have a pump?

 

[stable1]

He's got a closed loop pump which is really great. Libra 2 plus and a pod. But we need to prompt him so much and we worry about that in the long term obviously. Last night he obviously ate something before bed without putting in insulin. It was down to me to sort it in the night, so I'm tired today. We have a meeting with a psychologist in a couple of weeks, we need to help him somehow take some responsibility. Not easy. I think another problem is that he doesn't know anyone else with diabetes, that can't help..

 

[Thebearcametoo]

It’s really hard to take responsibility. We do a lot of gentle prompting. We offer a lot of snacks and meals include a lot of dessert/sweets so he’s never short of ‘treat’ foods. He was doing his own carb counting more but we’ve gone back to doing that now so he has one less thing to think about. Sometimes I just text him the number so he doesn’t even have to listen to me. I find teens don’t hear parental voices very well 😉

 

[SB2015]

In Addition to juggling all that T1 brings us there are the teenage changes to manage alongside. You have given very positive ways of treading this difficult path @Thebearcametoo and this has prompted a number of different approaches. Such a useful thread