Type 1 20 year old son stopped taking insulin

I hit a patch at the end of last year where I stopped taking insulin. For me, it was a case of being so anxious about the constant monitoring, the disappointment at seeing poor blood glucose levels, and feeling like a total failure... it was so much easier to stick my head in the sand. I got through it with Cognitive Behavioural Therapy, and it has made the world of difference and has let me reframe my thinking so I'm not seeing the continual failure of it all.
I think you need to see if you can speak to him to find out if there is any reasoning behind his decision to stop. Chances are, it will be difficult for him to speak to you - it's always so much harder to talk to the people around us. If he's not able to talk to you, then it's definitely worth encouraging to him to speak to a GP.

I'm very sorry to hear the position that both you and your son are in. Obviously, the ideal situation would be if you could talk him round to at least taking the insulin while help is organised for him. There are a number of places to try, e.g.
https://youngminds.org.uk/find-help...adult-worried-about-a-young-person-in-crisis?

This tool helps you locate urgent help in your area:- https://www.nhs.uk/service-search/mental-health/find-an-urgent-mental-health-helpline

If he takes no insulin and is not producing any of his own, he will become ill and collapse. If that happens, call 999 and explain what has happened so he is treated straight away in the ambulance. Hopefully it won't get to that stage.

This is something I’ve done before.. get to the stage of being a bit ill then start again

The difficulty is he is 20 and if he is of sound mind then there is nothing you can do… and in fact the more you push the more he may fight

Make it clear you are there for him if he wishes to talk

Keep an eye on him depending on if he is producing insulin or not it could be as little as a day to several weeks until he collapses be there to get an ambulance

Maybe being in hospital where there is care, discussion and hopefully doctors to discuss the mental issues might help?

Spike55 said:

Looking for any advice that can be provided. Long story short son diagnosed with type 1 few weeks ago. A lot to take in and he's in a major depression. He seemed to be getting to grips with it. But has now decided to stop taking any insulin at all.
Has anyone got experience of this? Do we just let it go for a few days and hope he gets thru it? He is living at home just now and we're at our wits end.

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I'm really sorry to hear your plight. Does he like technology? With mental health issues he could be able to get funding for a pump and a Libre?

It's so difficult to know what to do. I did something a bit similar. I threw all my insulin away. My husband called my GP, and I came around waiting for the GP to turn up to section me (Mental Health Act) in person.

Would he talk to a GP? Or a diabetes nurse? I got a diabetes specialist nurse who was fairly blunt and gave me a choice : insulin or death. I couldn't talk to my parents because I thought they'd be ashamed I wasn't coping. They weren't talking to me because they didn't want to pry and push into my private life.

Talking to anybody at all will help.

Hi, just a thought - can you contact his diabetes team at all? Difficult age as not under paediatric diabetes team so perhaps they wouldn't talk to parents as he is over 18, but I know my clinic do many different support sessions / counselling etc depending on need, for example. The referral time via the GP might be longer so it might be worth seeing if his diabetes clinic can offer anything, or even just advice for how you can help.

Agree that making it unequivocally clear you're there when needed is helpful, trying not to judge and thankful of any steps in the right direction. I've struggled at times with my parents not understanding the reality of life with diabetes. They have obviously always wanted the best for me, but not always managed to portray that in non-judgemental ways. I never think they mean to judge, but it has made me less open to talking to them when things haven't been 'textbook perfect' in the past.

Hi, I was diagnosed when I was 13. Took 0 - very minimal insulin till around 17/18, didn’t matter what any doctor nurse teacher parent or girlfriend said I didn’t give a monkeys. I simply didn’t accept it, luckily I had a very prolonged honeymoon period so I still produced a little of my own insulin. Luckily never went into DKA or had any episodes of illness but that’s something you’ll want to keep an eye on.

Not going to lie It was the worst time of my life when diagnosed & I absolutely hated my parents, blamed them for everything. It’s going to be rough without a doubt but he will soon start to feel rubbish and take a little insulin to keep him going which is what I used to do.

Spike55 said:

Looking for any advice that can be provided. Long story short son diagnosed with type 1 few weeks ago. A lot to take in and he's in a major depression. He seemed to be getting to grips with it. But has now decided to stop taking any insulin at all.
Has anyone got experience of this? Do we just let it go for a few days and hope he gets thru it? He is living at home just now and we're at our wits end.

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This must be so hard for you, it's one thing having it yourself but when it's your child (no matter the age) you would gladly take it from them if you could. You are clearly a loving parent and as others have said you are making sure he knows you are there for him. It must be so difficult not to 'nag' him but I fear that may make him more stubborn. Of course he is going through a bereavement of sorts, the 'death' of a 'normal' life for a 20 year old. I would say continue to be patient (up to a point because it IS a dangerous thing to do). How did he come to be diagnosed, was it in a shocking way at all?

I wonder whether you could speak to his GP (with his permission I suppose given his age) and whether they could talk to him about a CGM or pump? I know it's early days for that normally but if they could give him some hope at this stage that with these 'new' devices he can minimise the finger pricking and injecting whilst he is out with his friends at least. Also, they might be able to put him in touch with other young people, on a recent course of mine there were at least 3 20yr olds who huddled together and never stopped talking!!!!!

Thinking of you in the meanwhile and I hope your son stays well. x

KK123 said:

I wonder whether you could speak to his GP (with his permission I suppose given his age) and whether they could talk to him about a CGM or pump?

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For a 20 year old id say CGM or pump, or a pump with a cgm should be yours/his main priority. Im 26 & my main reason for moving onto a pump this year was because of how advanced the technology was, if he's a typical 20 year old he will love phones laptops etc etc? I actually love showing off my pump & cgm because I think its great, plus who else will he know walking around with £3000-4000 worth of tech strapped to him. It can take a huge weight off your shoulders so its definitely the route id go for at some point once he gets used to carb counting etc.