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At a loss as to what to do

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Now you're just trying to put me off my breakfast 😛
 
Hi Tina another way around your son's problem with accepting his diabetes is to perhaps ask his team to organise an apt as a group session without telling your son this is actually what it is. So they can then have a dietiction there perhaps some famous peeps with diabetes and reps also showing all the new gadgets/pens testers and pumps. Show what can be done instead of not what can't be done.
Reading all that you have written he does seem to have issues with food/drinks. So once he knows nothing is out of bounds perhaps this will help.
One of the master chefs could perhaps come and give his time working in conjunction with the dietiction.
Just a few thoughts doubt if anything like this could be arranged though. But my attitude is if you don't ask you don't get.
Sending you a (((((((((((hug)))))))))))))
 
Hi Tina
I think your son's team needs to be more proactive. They must know that rebellion is a normal state for teenagers, but with T1 in the equation sitting back and waiting for them to grow up isn't really an option. Agree that you might try giving your son's team (whether that's the children's service or the transitional one) a much needed shove. Whatever they say, your son is not an adult yet and he needs someone in authority (who is not family - everyone knows that kids kick against their parents) to work with him. The 'back off' approach was worth a try but it hasn't worked, so they need to come up with some new ideas -they've surely had to tackle this kind of situation before.
I wish there could be a magic wand to get him to see sense, but in the absence of that, there must be a precedent his team can follow about how to change things for the better. When William was so ill last year and no-one would listen I ended up throwing my toys out of the pram, and lo and behold he got the tests he needed and a diagnosis at last. I hope you don't have to resort to a meltdown before anyone listens to you, but your son needs help to face up to his diabetes, and after all, they are the experts.
Hugs ((((Tina))))
 
Hiya
Here is my two penneth sent with love as the mother of a teenage boy, apologies if you have already tried this.

Youoffered him a treat (Pepsi max) for testing.

The treat did work so may be worth trying on a bigger scale.

if he was misbehaving in other ways, stealing, taking drugs etc you would explain the consequences of what he was doing (no Xbox, tv in his bedroom, pocket money, access to lifts etc.) and offer a reward for changing his behaviour (bring a mate on holiday, driving lessons, cash etc.). You know him best and I'm sure can think of better things.

So the plan would be something along the lines of a chat (with his dad?) saying his behaviour and hba1c are not acceptable. He has one week to change his attitude which means testing 4 times a day, on waking and before meals and acting on the results. He will be left alone to do this but in one weeks time the results will be reviewed. If he does this he gets a treat, if not you must apply the penalty. If this fails you make the same deal keeping the treat the same but making the penalty harsher.

It may take several goes and you must be strict and mean what you say.

I hope this helps.
 
Another thought re the pepsimax/coke.
Can you buy some diet coke as well as full fat whilst he is at school? The very carefully take the tops off of both bottles and decant some diet coke into the full fat?
This will bring down the carb content quite a bit.
I have no idea what sort of a mess this would make so aproach with caution. 😱
Fingers crossed things will soon start to improve for you and your son.
 
Hi Sue, unless I'm mistaken pepsimax is a diet variety - daft name for it. The only reason I know is that William has a big pepsi habit 🙄
 
Just catching up with this thread, i'm sorry for all that's going on Tina! I do think your idea of a non-optional group meet of T1s would be ideal. Have you tried getting him involved in diabetes things online? Do his friends know what's going on? I know you don't want to seem pressuring etc., but maybe if they knew they could persevere with him? Try and make him see...

Just adding this in, if you think he'd benefit by talking to people with T1 then vicki (persil) and I have a facebook group for uni students so we are all around the same age, if you think it might help then PM me i'll send you a link perhaps to pass it onto him? Even if he just joins and floats around it might help.

Anyway, this caught my eye... I had such bad bad bad skin like 4 years before I was diagnosed. I still do but it's improved a lot! So interesting to read that it is a sign of uncontrolled diabetes!

Interestingly Northerner, 6 years ago my son had this humongous boil full of pus on his temple. It was the size of a grape and eventually burst (we were abroad on holiday) and carried on weeping so immediately took him to our GP on our return home a couple of days later. Way back then (4.5 years prior to diagnosis) our GP wanted a urine sample off him saying boils are a sign of uncontrolled diabetes. When we returned the sample to the practice nurse she scoffed at his request/reason for the sample, saying there's no way a child of 11 would be diabetic 😱 but isn't that interesting that all those years later the diagnosis came. I don't suppose it's even remotely related to his case, but interesting all the same.

I do notice his skin seems to suffer often when his control is bad, but then my daughter gets spotty if she eats chocolate more than just occasionally!
 
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Hi Sue, unless I'm mistaken pepsimax is a diet variety - daft name for it. The only reason I know is that William has a big pepsi habit 🙄

Ah ok, am getting confused with all the names :confused: What am trying to say is mix full fat and SF together. 🙂
 
I'm just able to reply to this, read it on my phone but too tricky to reply there.

I am so sorry for what you are going through and understand entirely where your reluctance is to back off any more. You have tried that approach and that must have been very hard anyway, and still he is not complying so something has to be done. Does he not listen at all about the dangers of running high sugars etc? I guess as a teenager he thinks he is invincible but he needs to understand that isn't the case with this disease but if he gives it the little time and respect it needs then he'll feel much better in so many ways.

It may unfortunately be a case of DKA to scare him into action, as horrible as that is for you all to contemplate. Does he ever check his ketones?

I do think his team need to step in more here too, you have tried so hard and it's not working - they must have come across people before who don't comply as teenagers, it's a real shame he is so reluctant to get involved in any groups or anything - online or otherwise.

How are things this week so far?
 
So many people to answer to, and I don't know how to do multiple quotes so I will answer what I remember!

Pepsi Max is sugar free. I wouldn't let him have any full fat coke on an ongoing basis, so no worries about that adding to his carb count. I do occasionally buy a carton of fruit juice for a Sunday morning breakfast and if he finds that, he will help himself until it's all gone, so we don't advertise the fact we have any when we do, and fortunately have a second fridge in the garage which he only checks occasionally. But no worries with the Pepsi Max, no sugar in it.

My son is not interested in ANYTHING diabetes related. Won't even consider looking online for anything. He knows I go on 'a forum' and I have wondered if he has ever found this when he borrows my laptop. He would go absolutely ballistic if he thought I wrote about him on it. I do occasionally mention I have read something 'on my forum' but he has never asked to look at it. I'm sure with my members name it wouldn't take him any time to identify me either. Maybe I should change it(!) I did mention a while ago that there are various Facebook T1 groups but he really isn't interested. He would say in his own style "That's just gay!" When I talk about him meeting any other T1s he just says an emphatic NO. His closest friends do know about it, but I really don't know WHAT they know, as his peer group changed a few months after diagnosis as it was the end of year 11 and most of his closest friends left school. He has a new group of friends and told me recently one boy's dad had diabetes too. I kind of assume that's T2, but of course it could just as well be T1. He says he doesn't know which type. His closest friend is still on the scene and he does know about it, but I have never felt I could privately talk to him about it. I don't know his parents other than to say hello, and if my son ever found out I had approached them, again he would never forgive me. He sees it as his problem, and is intensely private, says it is no-one else's business.

Interestingly, yesterday he was up for a bit of a chat. He texted me on the way home from school at lunchtime (he is very part-time at the moment) and knew I was doing a nursery run so asked if he could meet me and walk home together. I thought that was only cupboard love, wanting money to pop into the local shop for - wait for it - Pepsi Max, but no, he didn't ask. He suddenly struck up a conversation though about a new Accu-chek Mobile upgrade we had received some weeks ago. He asked me if I had moved it from his desk. I admitted I did, saying it was obvious having sat there a month that he wasn't going to use it, so I moved it into the storage box with all his diabetes spares (needles, test cassettes etc) in the top of his wardrobe. He said no he did intend to use it. So I suggested when we got home that he loaded it up and gave it a go. He instantly came back with 'Well there's no point being on M3, it will still be in my system so the figures won't mean anything, I'll wait until teatime'. I just pointed out that that made no difference. If it's working properly (though neither of us understand it really) his levels should still be reasonable if everything else is ok. I suggested he tested before eating his lunch, and again reassured him that it wouldn't bother me(!) if the result was high.

I have to say I was utterly gobsmacked to have him tell me it was 7.8! I was a little sceptical as to whether this was the truth, in fact I was massively doubting it would be, BUT IT WAS! Just goes to show that in the preceeding 24 hours he had conformed perfectly and lo and behold, decent figure.

He then said he wanted to change things round in his room and had an empty drawer in his desk, and had decided to move all his diabetes stuff into there. He used to keep spares up out of sight, but needles, lancets, pens etc on his desk. He was actually quite enthused sorting it all out. I felt this was a really positive step forward for him.

Unfortunately, it was shortlived, I went in this morning after he had left for school to find he had taken no insulin last night (for dinner or Lantus) nor had he taken his M3 this morning. I actually wonder whether he could have literally forgotten with it all out of sight in a drawer now, but then could you really forget after 18 months of it??? On the plus side, he did obviously have some this evening before going off to work as he again came down at 5.30 chewing a green cap!

I have to go and collect him in a few minutes, I might, depending on his mood, suggest he tests before bed and again in the morning, just to have a bit of an idea what's happening overnight. I really do feel I have to wait for the time to be right with him though.

I do see it as positive that he has now tested twice in the last week - shockingly bad I know - but 100% improvement on the previous 2 months. I still haven't done anything proactive, I am hopeless. I am not assertive and shy away from difficult things. Too soft for my own good. I will just keep chipping away though, when I feel he is receptive.
 
Does he ever check his ketones?

Does he ever test for ketones??? Sorry to say that as he won't even test his BG, ketones are a big no-no. Especially when he knows what they would mean. I would have loved to know what they were at last week on the 27.7 but knew he simply would refuse to do it so didn't even mention it.
 
Tina, number one - you are NOT hopeless! Number two - that sounds really encouraging that he has gone so far as to test and take his insulin AND get a decent result, even if it was short-lived. It could be a change in his attitude towards it. I wonder if he has had so much on his mind with his exams currently, he wants them out of the way and then is going to look more to the future? I remember being very focussed when I had exams at his age and anything disagreeable would be pushed into the background until they were out of the way.

To me, it sounds like a really positive step. I'll keep my fingers crossed for you and him 🙂
 
So pleased to hear about this bit of progress 🙂 The room tidying is v.encouraging, sounds like he wants to have better access to his stuff. You've done brilliantly to keep the lines of communication open the way you have, he obviously trusts you more than he's usually willing to show. Here's hoping for some more days like that.
 
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