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Insulin refusal! Please help

C

citrus2512

Member
Messages
6
Type of diabetes
Parent
Treatment type
I do not have diabetes
Hi all,

I am at my wit’s end here. My son is (age 14) and was diagnosed 18months ago. Initially he was great and managed well. Recently though he has stopped taking care of himself and just takes random amounts of insulin- usually after he has gone high. He has gained a lot of weight through comfort eating but is blaming insulin. He is point blank refusing to take Tresiba now though still taking some FIASP. We checked his pens and discovered today he has no Tresiba in 3 days! Has anyone any experience of this? We are getting him counselling but in the meantime what do I do? He is usually rational but at the minute he is just so illogical regarding diabetes! So worried about him. Needless to say levels are awful.
 
Hi @citrus2512 welcome to the forum

Sorry you are in this situation with your son, I can’t help much as I’m T2 and have no experience of insulin & T1 but there have been posts from parents in similar situations on the forum in the past. From what I’ve seen & read it’s not unusual for teenagers to “kickback” like this - for one thing they’re teenagers - that’s their job! I’m sure someone who has far more knowledge than me will be along to share their experiences and advice. Hang in there it’s still very new to him and at 14 he’s dealing with lots of changes not just his T1
 
Thanks- it definitely seems to impact a lot of teens.
 
I am sorry to read about your concern. Just with my parent’s hat on does your son have a close friend or friends that could influence him. I often had a quiet word with the mum (or dad) of one of my son’s friends, you will know who to pick, and get the mum (dad) to explain to their son how diabetes works and if his friend doesn’t take his insulin carefully he could end up very poorly in hospital. Just a thought. Thinking of you and wishing you all the best.
 
Thanks, he is in a support group but won’t really engage with it. His other close friends are more of an escape for him at the minute. It is just so exhausting. I hope we get counselling sorted soon
 
Hi @citrus2512 ,

Welcome to the forum.

Putting my young man hat on.
Bit controversial this one. Different era. At 14 for me it was 1982.
I was shown examples of the results regarding insulin omission..
“Cautionary tales” of those in their own struggle & the physical toll it takes..

I can appreciate your son’s non engagement with support groups at that age. I remember everyone the the clinic waiting room pretty much sat “shoe gazing” in silence like we were waiting to the the headmaster…

Best wishes to you & your kid,
 
Thanks so much. Could I ask what made you rethink things or was it just a gradual maturity? I suppose I am so worried about doing himself irreversible damage that could impact the rest of life even more than diabetes.
 
citrus2512 said:
Thanks so much. Could I ask what made you rethink things or was it just a gradual maturity? I suppose I am so worried about doing himself irreversible damage that could impact the rest of life even more than diabetes.
Click to expand...
Oooh, that’s tricky.

I tend to learn from other people’s mistakes? A “dummies guide on how not to do it.”
It’s a mix of stuff. The family dynamics changed on diagnosis 6 years previously.
It all felt to me like I might as well have stollen a car? I don’t think any kid wants to upset mum..

One day, my mum owned up to feeling guilty giving birth to me only to develop this condition.
My response was, “sheds happen..” we were always cool..

As a fully grown adult. The insulin use over the years hasn’t caused me weight gain that some of my peers struggle with without the diabetes.

I had no access to the internet as a kid.
It would be interesting to understand how your son got this notion regarding insulin & weight gain?
 
Hello @citrus2512 Welcome to the forum. I'm sorry to read about your son.

High sugar levels make me feel ill, and the last thing I can be bothered doing is sorting out my insulin. I can also argue black is white. This is as a long term type 1, so obviously I do get on and sort my levels out, but just wonder if this is also impacting your son, as well as being a teenager and relatively newly diagnosed.

Are your son's hospital team supportive/easy to get in touch with? Have they suggested an insulin pump at all? I'm assuming he already has a cgm?
 
They did he is at least another 18months to 2 years until he gets a pump. They are supportive and have given us some counsellors who take private clients and have been pretty good. He says he feels ok but I definitely notice him getting angry/being easily frustrated when he is so high. However as you say he will just argue if challenged. I am so tired- exhausting
 
I am sure he gets some info on the internet and too be far insulin can impact weight but he is gaining weight from a high carb, low exercise diet- he won’t be told though. He lost a lot of weight before diagnosis (he was full DKA) and remembers that but not how sick he was. He just wants us to butt out however he is sky high so we can’t
 
I lost a shed load of weight in a short time before diagnosis too. I was pretty ill..
& the weight lost should come back when treatad. But there can be more to unwanted weight gain than just blaming insulin.

I feel we’re all different emotionally with high BGs, I just become quiet & need my own space till I come back down? Sort of, “not tonight dear.”
I’ve sacked off social party invites in the past..
 
Would there be an option of sort of being a concierge service for him- just as an interim measure?
Essentially managing all the numbers for him, and even doing the injections if he wont engage. At least it would get his numbers better under control and then he would hopefully be in a place to make better decisions. Would he be able to get away with a morning, after school and and evening if he reported at a certain time to you?

Another option could be a 'big brother' type mentor or a sports coach/sports psychologist if he is sports orientated? someone away from the family and friend group, who may have experience in having tough conversations with teenagers, and understands diabetes. Are there any ex high schoolers /sports/interest /club alumni that he would look up to that would have experience with it? The school may know of some.

A discussion about consequences is an option, but I assume it wouldn't be listened to in the frame of mind that he is in.
Depending on the numbers he is looking at, would a hospital admission be an option/appropriate?
It seems dramatic, but it might be enough to shift him out of his current 'routine' and show him how serious things are.

Could you set a competition with his support group with a prize?

Another option could be to set a really big distracting goal. Doable with sustained effort, and a bit of parental support. Climb a mountain, run a marathon, gold duke of edinburgh ( do they do that anymore?) travelling to a major chess tournament, or to see reindeer, or watch a sports team...International dance competition, get a job doing x, ...whatever. At the moment he probably feels like his life is all about diabetes, and what he cannot do. But if a really really big distracting and enticing goal is set to work towards( whether training or fundraising), then having to manage the diabetes is part of the journey, (a necessary evil?) but not the main goal. Also it means he will have something else to talk about, post on his social media about, and be known at school for. Instead of the kid who has diabetes, the kid who did x.

If all else fails, bribe with a Pet? - though a bit tricky if he goes backwards. If an unusual pet, could work towards that as the goal mentioned above?
Good luck!
 
Uff, what a difficult situation for you. Wondering why he has to wait 18 months/2 years for a pump??? Would that solve the problems do you think? Is it the sheer mental effort of having to figure all the numbers out all the time?
I am at the other end of the age spectrum, 70 and diagnosed just 2 years ago and I do sometimes wonder how I would have managed if type 1 had hit me earlier.
Wondering what happened to him at diagnosis? presumably he was hospitalised for a while and was taught some ‘good’ routines and practices? I manage my diabetes better when I am out of my ‘normal’ routine, I retired last summer, and have ’special’ things to do, like holidays and trips. When my life is ‘just me and my diabetes’ it’s easy just to stay in bed and wait for my bs to go down to near hypo levels. I was told not to be too concerned with high numbers , as I won’t be living long enough for them to have a bad effect on me! I wonder what was said by the medics or maybe just incidentally by somebody. Maybe not good to go delving into that.
I think the idea of a ‘project’ to work towards or a trip is a good one. I had a trip round Northern Europe, starting at Danish Legoland, booked for 2 weeks after my release from hospital, with my 14 year old grandson. I thought the medics might not allow me to go on holiday.. but having established I wasn’t going anywhere hot… I got the all clear to travel. Grandson had a crash course in diabetes management and off we went! It saved me from sitting home those 3 weeks feeling sorry for myself and wondering how I was going to manage this business. My driving license was revoked for 6 weeks, so I couldn’t drive myself anywhere!
I hope your son can talk to someone and sort things out for himself.
sending best wishes to you and your son.
 
Long, long time T1D diagnosed at 14/15. I was fortunate to be past the worried about what other people think/ not being different phase and just in the "go away and ....." Phase of teenage life.

At that time - late 70's - there was a distinct lack of readily available information and no specialist Paeds service.


From what I have read your son may be struggling to cope with a condition that poses many long term risks that medics go on & on about and being different at a critical teenage time. Like many, including older people, he may feel overwhelmed.


There are many suggestions above and if I was to make some they would be to,

Help him own it - provide links to inspirations such as professional footballers, cyclists, pop stars (there is a clip on YouTube about one of the Haim sisters when her pump alarm goes off mid interview), even Lila Moss.​

Find the information aimed at younger people and guide him.to it.​

Shout at the medical team on his behalf.​

Make it normal, food and dosage must be his decision.​

Use the sensor info ( if I'm the UK he must be on one) to gamify his control - how long can be stay between the lines.​

Support him to work out why things did not work out as anticipated.​

Treat him normally for all the teenage stuff, but not the T1D stuff. It does not make him different from other teenagers just one with some extra baggage.​

Perhaps do a project on T1D and how treatment has developed, particularly the latest Hybrid Closed Loop tech. I am so jealous over access to that​



These are based on my long experience of life and some reflections on what I wished I had access to. I hope it provides some ideas.

Also please use the forums like these to maintain your own sanity. My mum worried about me & my T1D all her life and I loved her for it.
 
I write as a T1 diabetic diagnosed aged 8 in 1969, lots of good advice in the comments above.
My heart goes out to you as parents in this position and also to him. From the perspective of a young person, this is a dreadful disease to get not least because it gives other people, your parents, the doctors/nurses the right to tell you to be ‘ good’ and continually pass judgement on every last detail of your life, including what you eat and when. Constantly you’re told of you don’t pay attention to your control, your ‘numbers’, awful things can happen now or later. With hormonal and other changes in adolescence controlling the numbers isn’t straightforward. The best piece of counselling advice I received and would pass to him is to get angry, it’s not fair, grieve, every day if you have to. Also know that insulin is your friend in this, it will let you take your life back so take it regularly. In time you can work out a way to manage this as you. Without it taking over your life or you having to become an inspirational role model.
Conscious of course that I do not know your son or his circumstances or the conversations you have had. I hope my own experience may be of some help.
 
 
Hi, I can only comment from a personal perspective…
As a T1 diagnosed at 32, I’d ALWAYS been slim and no problem with weight gain, then you’re put onto insulin and you do gain weight - even as a 32 year old woman this was distressing and I pretty quickly, in my mind, made the link that taking insulin = getting fat. Stupidly I did what your son is doing, only worse. I pretty much stopped taking insulin altogether.
This is, unfortunately a pretty common phenomenon with T1, couple this with your son being a teen and not wanting to feel different from his peers and you have a whole host of things going on in his head. Diabetes is as much as much a mental battle of wills with yourself for many. I still have that urge to NOT take insulin and lose weight - getting someone for him to talk to is a posmove - are there any Diabetes UK family support groups in your area? If so they’re a really good place to start as there’ll have been other parents of teens who’ll have a far better insight into how to deal with this, and will be able to offer support. I really wish you all well x
 
Hi my son was diagnosed at 14 with type 1 and for the first 6 months it was great then he started doing what your son is doing and ended up in critical care twice with dka. He then unfortunately went through a drinking faze which ended u with other hospital visits. He just didn’t want to be different, he didn’t want to have diabetes. He is now on a pump and this has helped loads but I think for him it has just been an accepting thing and maturity. He is now nearly 17 and doing well. Hopefully your son will see what he is doing and hopefully accept that he needs to look after himself. My son didn’t engage with anyone I tried to get involved but has now started speaking to his Camhs worker and is on a training course. There is light at the end of the tunnel. X
 
This is awful and you have obviously drummed it into him the importance of taking the insulin I was a bit Blaise about it once upon a time until I had to go into hospital over a cut that was not healing and was infected on my thumb I was placed in on the acute diabetic ward and it was a real eye opener for me seeing people with all kinds on limbs and fingers missing it struck home I need to look after myself better and although not 100% fully under control as I have the odd day off it’s a million times better would be be up to going the hospital with you to see what could happen to him or show him some videos maybe? Good luck with it u must be out of your mind with worry x
 
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