worried parent

[worriedparent]

Hi there don't know where to begin , I am a very worried parent of a 20 year old type 1 son , who is slowly killing himself by not taking insulin and eating things he shouldn't and always ends up in hospital with dka , his veins have all broke down and at the moment he has had his 4th line in his neck , 3 on one side and 1 on the other , I know by this that he has only another 2 lines that can be put in his neck if they can even get them in , for the last nearly 3 years he has had a regular routine , in which he goes into hospital with dka just about every fortnight , god knows ave tried everything to get to the bottom of why he does it and to try and get him to stop but he won't , am terrified now that her not gonna live til Christmas and don't know wat ta do anymore , have spoken to diabetic doctor on several occasions and he has no idea either , all I can do is sit back and watch him die its killing me to watch him suffer all the time , at the moment he has just been discharged from hospital after being in 2 weeks and has pancreitis , he still says he feels really unwell but doc said he was fine to go home and rest with pain killers but I am scared he will end up back in hospital sooner than usual , I am a very strong willed woman but it is hard when it is utr own son dying as we can see no way out of this , everyone's opinion would be much welcome in this case please XXX

 

[Redkite]

Really sorry to hear this, you must be beside yourself with worry. One of the forum members (Tina) has gone through something very similar with her 18 year old son - hopefully she will see your message and be able to advise. From what she posted, she said she was almost powerless to help, with him being seen in adult clinic and refusing to talk about his diabetes to anyone in the family. But Tina wrote/spoke to the clinic team confidentially and asked if they could prescribe her son mixed insulin, ie 2 injections a day instead of expecting him to do 4+, carb counting etc. that he just wasn't complying with.

Did the diabetes consultant see him while he was in hospital? Has there been any input from the diabetes team? I'm shocked they can just keep admitting him and then sending him home again with no action plan for what is clearly self-harm. Would your son have counselling do you think? Is he depressed about his diabetes or just in denial?

Really hope you can get the right support to help him through this.

 

[Northerner]

Hi worriedparent, welcome to the forum 🙂 I'm very sorry to hear about your son's problems - has he been diagnosed long? Unfortunately, many young people seem to undergo a rebellious period as they transition into adulthood, we have parents here in the same boat I'm afraid I can't offer any advice from personal experience, I was much older at diagnosis, so didn't have to try and deal with it alongside all the other changes that come with that age. Has he been offered any counselling? Does he know anyone else with Type 1? Sometimes it can really help to speak to others who understand. There are quite a few social groups around - Circle D is one that has groups up and down the country, and there are quite a few groups on Facebook.

 

[Hanmillmum]

Hi, so sorry to hear about your son

Has he ever opened up about why he is harming himself to anyone. Do you think he is depressed and needs some psychiatric support? His team could refer, even if it is just to explores this area. I feel its a real shame that he is suffering like this and no-one medically has taken the bull by it's horns. He surely can't be thinking straight with running his BG's high, constantly having DKA and not having his insulin - his mood must be all over the place.

How old was he when he was diagnosed?

 

[worriedparent]

Hi than for sure message , my son has had his diabetes since he was nine nearly 11year now so he knows exactly wat he's doing but still doesn't seem to stop , he is supposed to be waiting to see a phychiatrist to talk to but has been waiting months for it , the diabetic time don't seem ta know wat ta do with him he doesn't listen to anyone , he has a friend who went through the exact same thing , even thou his nev went on for this long or went this far , nothing seems to work and he is awready been on 2 injections a day for the last couple of years an still misses them out sum times ,they say he is not depressed and the diabetic doc always sees him in the ward but they just wait til his blood sugars are back to normal then send him home again til next time , I keep phoning them up and even spoke to his diabetic doc today but he doesn't seem to see any answer , and think he agrees with me that he won't see Christmas as when I said that to him he just went quiet , so I am stuck with the fact that nothing can be done , I even asked about him getting an islets transplant on his pancreas but he said that would be no good to him as he would prob still have to take insulin and because he is known not to take his medication , that after the transplant u are given a heavy cocktail of drugs which need to be taken u can't even miss one otherwise the islets will be rejected, so that was my last hope I thought maybe if I could get him the transplant it maybe help or even take the diabetes away , but we all just have to live life as best we can til the end comes , just have to take each day as it comes XXX

 

[Redkite]

Is there anyone, friend or family, who your son would confide in if they had a heart to heart about what he's doing to himself and how worried you all are? This is so difficult, almost like a drug or alcohol addiction (except in this case it's what he's *not* doing that's causing him harm) - he's got to want to do it for himself, nobody can make him, but I really hope he make that decision. When did he start missing his insulin? Was he ok with it as a teenager?

 

[Hanmillmum]

Keep on with the psychiatric assessment, not sure what services are like in your area but you shouldn't have to wait that long, lots of NICE guidelines around self harm and depression and expected treatment/waiting times/support (both short term physical and psychological treatment and secondary services follow up) It's not for the diabetes team to decide whether he is depressed/self harming or not etc. Really - would an adult who kept seriously cutting themselves or overdosing be left to keep doing it each fortnight? Is omitting life saving treatment not the same thing? He deserves an assessment at the very least to determine whether he is fully capacitated or if there is a presence of mental illness. It's a different matter if not of course.

Hope you can get somewhere fast. Your sons team appear resigned and apathetic 😡

 

[worriedparent]

Hi , no he wasn't quite as bad when he was younger as I was doing everything for him including his injections and blood sugars but when he turned 17, the diabetic teams said he had to take responsabilty for his own diabetes, so we let him do it from there , I ended up taking control again for a bit , then was told he had to do it for himself , now he is an adult he thinks if I try and take control am treating him like a child , part of me wants to but another part says no he's an adult now he has ta do it himself,I can't always be there all of the time , I don't even get DLA for him , we have been appealing since he was 17 and they just seem to forget about us , we have eventually got a hearing next month , I have quite a lot of discharge slips as evidence as u can imagine every fortnight they add up over the last couple of years.

 

[fencesitter]

Just wanted to send some moral support, so sorry to read your story. There's a real gap in getting help for people like your son, if he was self harming in a more conventional sense (eg. cutting) he might get more attention, but this is more 'hidden' I suppose.
I think it would be worth getting in touch with Diabetics With Eating Disorders. I know he doesn't have an eating disorder, but the effect of his lack of self care is the same (DWED support people who don't take their insulin because they want to lose weight, ending up in frequent DKA. Many of them are around the same age as your son). They might have suggestions about steps you can take to get support for him. You can find them here: www.dwed.org.uk/‎
Very best wishes
Catherine

 

[HOBIE]

Good luck with this W Mum. I think it would help if he could get to talk to the right person. Sending you some support 🙂

 

[Tina63]

Hi worriedparent

So sorry to hear of your struggles. I can empathise to some degree. My son is 18 and is putting us through it too. I am thankful that things have not got as serious for us, but I do think that is partly because my son's diabetes doesn't seem to make him crash as quickly as others' does. He has never been in DKA despite serious non-compliance.

What I am going to suggest is extreme. Couldn't he be sectioned under the Mental Health Act? I am not trying to scare you or be sensationalist, but if he is harming himself to that degree (and it really does sound to me like this is mega serious) he really will end up killing himself sooner rather than later. People who self harm in other ways get sectioned, so surely this counts too. I have no idea how you go about this though. Could your GP get involved and sort something? I know this would be horrendous for you, but at least then they can force medication/procedures upon him and you can guarantee he would get seen by a psychiatric team. I just don't know what else to suggest. I sure feel I am hitting my head against a brick wall much of the time with my lad, and we haven't even had him hospitalised with it yet, so how you are coping, I just can't imagine. It's horrendous as a parent, you love them so deeply, but watch them destroying themselves, and are powerless to do anything about it.

My son's HbA1c has at long last started coming down a bit, still way too high, but that's after going onto the twice daily mixed insulin, so a backwards step really, but at least his figures are better. He never tests, he rebelliously eats bags and bags of sweets etc, now binge drinks too, and he is one very angry young man. No-one can talk to him, he sees a psychologist at the moment but from the scant information we do gather they seem to be focusing on anything BUT his diabetes and non-compliance, and I sometimes feel the psychologist is creating problems that didn't exist before! My son's moods are horrendous, he is causing massive rifts within our family, and now says he can't wait to leave home. I never imagined our lives would end up like this. We have never had 'control' of our son's diabetes as he was almost 16 at diagnosis. I am not even allowed to mention it.

Do you have a husband or partner? If so, how are they dealing with it? Or any other children yourself?

I'm sorry I can't offer any other help. I feel my situation is dire enough (and there is more I am not prepared to go public about) but as I say, my lad has never gone into DKA (yet) so how on earth you cope I really don't know.

Scream, shout, jump up and down, do anything, but make sure SOMEONE listens. You/your son needs help, and you need it NOW. I am mad for you at your team's attitude. It stinks. But then what can anyone do when these young people are classed as adults and therefore of sound mind (supposedly) to make their own decisions? We have been cut out of our son's care for quite some time now, even when he was below 18, which made me mad, but I am not pushy and didn't dare oppose it. He would have gone mad had I butted in anyway, but I feel I was dismissed and now all his anger and resentment is levelled at me.

I'm rambling. Sorry. Is your GP any good though? Could you go there and really really lay it on thick about how utterly despairing you are and desperate to get some PROPER help?

I do hope something gives very soon. Please keep us informed of any progress.

Thinking of you.
Tina xx

 

[Hanmillmum]

Hi worriedparent


What I am going to suggest is extreme. Couldn't he be sectioned under the Mental Health Act? I am not trying to scare you or be sensationalist, but if he is harming himself to that degree (and it really does sound to me like this is mega serious) he really will end up killing himself sooner rather than later. People who self harm in other ways get sectioned, so surely this counts too. I have no idea how you go about this though. Could your GP get involved and sort something? I know this would be horrendous for you, but at least then they can force medication/procedures upon him and you can guarantee he would get seen by a psychiatric team. I just don't know what else to suggest. I sure feel I am hitting my head against a brick wall much of the time with my lad, and we haven't even had him hospitalised with it yet, so how you are coping, I just can't imagine. It's horrendous as a parent, you love them so deeply, but watch them destroying themselves, and are powerless to do anything about it.

For this he would still need that initial psychiatric assessment and if his GP or Diabetic consultant faxes/phones through an "urgent" referral to the correct Community Mental Health Team, then son could be seen (depending on their policy) within 24hrs. If he is deemed high risk but unwilling to accept hospitalisation from that initial assessment the assessor will request a Mental Health Act assessment.

 

[JodieK]

I realise this is an old thread but am keen to follow it through. I am in the same situation as worried mum and would like to know the outcome of her story. My 23 year son has ASD and has been refusing his insulin since he was diagnosed with T1 1 year ago. Until now he has been in honeymoon and has survived by taking just one long acting shot every few days. He would avoid taking his insulin at all costs due to anxiety and would wait until he started to feel unwell before injecting. Over the last few weeks things have got worse and he has been in hospital every week with ketoacidosis. Today he was sectioned into a psychiatric ward for assessment. Although I know
It is what he needs to keep him safe, I can't help feeling distressed and anxious about the situation. I would welcome the opportunity to speak to others in a similar situation

 

[Northerner]

I realise this is an old thread but am keen to follow it through. I am in the same situation as worried mum and would like to know the outcome of her story. My 23 year son has ASD and has been refusing his insulin since he was diagnosed with T1 1 year ago. Until now he has been in honeymoon and has survived by taking just one long acting shot every few days. He would avoid taking his insulin at all costs due to anxiety and would wait until he started to feel unwell before injecting. Over the last few weeks things have got worse and he has been in hospital every week with ketoacidosis. Today he was sectioned into a psychiatric ward for assessment. Although I know
It is what he needs to keep him safe, I can't help feeling distressed and anxious about the situation. I would welcome the opportunity to speak to others in a similar situation

Hi Deborah, welcome to the forum 🙂 Very sorry to hear that you find yourself in a similar situation to the original poster of this thread Unfortunately, we haven't heard from them since , so don't know what the outcome was.

Does your son fear the injections? Has a pump been suggested? This would involve fewer interactions, as the pump catheter only needs changing every two or three days, and it would mean no extra injections during the day. There's more in formation about insulin pumps at http://www.inputdiabetes.org.uk/

Hopefully, someone who has been in a similar situation will respond - or possibly the original poster will be prompted to post an update. Can I suggest also contacting the Diabetes UK Helpline service, as they may be able to suggest other resources and routes for help? They can be contacted via https://www.diabetes.org.uk/helpline

I hope you are able to get your son the help he needs, it is truly a cruel situation to find yourselves in {{{HUGS}}}

 

[Redkite]

I realise this is an old thread but am keen to follow it through. I am in the same situation as worried mum and would like to know the outcome of her story. My 23 year son has ASD and has been refusing his insulin since he was diagnosed with T1 1 year ago. Until now he has been in honeymoon and has survived by taking just one long acting shot every few days. He would avoid taking his insulin at all costs due to anxiety and would wait until he started to feel unwell before injecting. Over the last few weeks things have got worse and he has been in hospital every week with ketoacidosis. Today he was sectioned into a psychiatric ward for assessment. Although I know
It is what he needs to keep him safe, I can't help feeling distressed and anxious about the situation. I would welcome the opportunity to speak to others in a similar situation

This is very difficult for you. Has your clinic suggested an insuflon cannula? This is manually inserted into the abdomen, and the insertion needle is withdrawn, leaving a plastic cannula under the skin, with a little bung above the skin. All fast acting injections are then done by inserting the injection pen needle into this bung. The insuflon cannula can stay in place up to a week, before a new one has to be inserted, thus it's just one needle prick instead of 21+. However the long acting insulin would still need to be injected directly into skin, because you can't mix them through the cannula (there is a "dead space" of about 0.7U that sits in the cannula until the next insulin dose pushes it through into the body tissues. Is he using lantus (glargine)? This stings when injected, so might be better with levemir to reduce unpleasant sensation when injecting.

 

[Northerner]

This is very difficult for you. Has your clinic suggested an insuflon cannula? This is manually inserted into the abdomen, and the insertion needle is withdrawn, leaving a plastic cannula under the skin, with a little bung above the skin. All fast acting injections are then done by inserting the injection pen needle into this bung. The insuflon cannula can stay in place up to a week, before a new one has to be inserted, thus it's just one needle prick instead of 21+. However the long acting insulin would still need to be injected directly into skin, because you can't mix them through the cannula (there is a "dead space" of about 0.7U that sits in the cannula until the next insulin dose pushes it through into the body tissues. Is he using lantus (glargine)? This stings when injected, so might be better with levemir to reduce unpleasant sensation when injecting.

Could it be used with a mixed insulin? Not ideal, but better than no insulin.

 

[HOBIE]

Really good luck Deborah 🙂. You have our support. Please ask if it helps.

 

[stephknits]

what a horrible situation, very sorry to hear your story. Has anyone got to the bottom of why your son refuses the insulin? Is it the needles, is he in denial about having diabetes? Hopefully the psychiatric team can get to the bottom of it and begin to address the cause. As Hobie says, we are all here to support you, do let us know how you get on.

 

[Redkite]

Could it be used with a mixed insulin? Not ideal, but better than no insulin.

Not sure, I don't know how the long acting would "break down" while it's waiting in the cannula. My son had an insuflon cannula when he was on MDI because he was having so many injections a day, but it could only be used for his novorapid.

 

[JodieK]

Hi thanks for the suggestions guys. It's comforting to know there are people listening. Lots of staff have suggested the pump but this was ruled out by the community and diabetes nurses due to the risk of hypos. It would be fine if he would let the community nurses support him but he refuses to engage on any level andbecome volitile.

I had never heard of the cannula. It would be worth considering but my sons main problem seems to be health anxiety. I think that any thing inserted into his skin will pose a problem for him. I have ordered him a libre patch for trial which would illuminate the need for finger pricks. I suspect even this will cause him anxiety. He doesn't deal well with any change and his problems are complex. A combination of rigid narrow thinking, resistance to change, anxiety and hypersensitivity which all leads to denial and avoidance. His anxiety overrides his decision making. The section was a last resort and the plan is to assess him once he has had a few weeks of insulin inside him and see what the issues are. He has already started refusing in the hospital. It's a heart wrenching situation.