I Don't Know How to Help my Son.

[colleen]

I am a single parent whose son was diagnosed with type 1 diabetes on his 13 th birthday, he is now 19. He has been in hospital with ketoacidosis 3 times, the last time when he was 16. Since then, he only does one injection each day of Lantus slow acting insulin - the minimum to keep him out of hospital - but doesn?t inject quick acting insulin each time he eats so his blood sugar is always much too high. He doesn?t do any blood tests and hasn?t done for years.

He underachieved at school, left with some GCSE?s at 16 to do a catering course at college but he hated it and dropped out without a qualification. He went back to sixth form college to do A levels but didn?t work and was asked to leave. Since then, he has been receiving job seekers allowance but hasn?t made any effort to get a job and doesn?t know what he wants to do.

He has often seemed depressed, retreating to his bedroom to play computer games for hours and days on end, eating junk food, chocolates and sweets and drinking about 6 litres of diet coke a day. I have wondered if he has diabulimia.

I have tried every avenue I can think of for advice on how best I can help him but ultimately, I?ve always been told that it?s his life, his body and that there is nothing I can do to change his behaviour - he has to want to do it for himself.

He seems angry about having diabetes and has been offered counselling and the help of a psychotherapist specialising in diabetes but has refused all offers with the words, ?therapy is for mad people.?

I feel like I?m walking around our home on ?eggshells?, he is extremely moody and difficult to live with, hard to engage in conversation, manipulative, controlling and blaming of me. Underneath, I know he?s a funny, bright, kind and gentle young man but he?s lost and so am I because I don?t know how to help him.

I have good days and better days and sometimes like now, I feel frustrated, worried and at my wits end.

I?d be grateful for any advice.

 

[novorapidboi26]

This part of life was the hardest for me personally, so I can sympathize with you, although I was out on my own by then............

The only thing that might help is an educational course like DAFNE, which will educate him in an a simple, easy to understand way, and let him meet other diabetics with the same problems, it might encourage him to face his diabetic demons.......

No doubt the bad blood sugars was responsible for his educational problems.........

Even get him on here, just realizing there are others going through the same thing is helpful, and means also that its not some doctor shouting at him......

 

[Steff]

Coleen hi and a warm welcome to the forum x
theres at least a couple of people on here with sons of very similier ages to yours so im sure when they see this they will jump in and help you out x

 

[Northerner]

Hi Colleen, welcome to the forum. I'm very sorry to hear of your son's situation, it really does sound like he is very much in denial about his diabetes. Unfortunately, his unwillingness to inject for his meals probably means he is carrying high blood sugar levels most of the time and this will be having a profound affect on his moods too, likely making him prone to depression and less able to start to deal with things - I would say he most certainly needs help from an outside source if he refuses to listen to you. But if he refuses to consider it, I'm not sure where you stand with it.

The worst thing about this type of denial and resistance to manage his diabetes is that, if he just spent those few minutes each day doing what is needed, then he would feel much better and not have it nagging away at him all the time (which it must do - his anger and resistance are no doubt due to the guilt and frustration he feels about it all).

We do have other parents and members who have been through this, or are going through it, so hopefully they can offer you some practical advice of how to get him the help he needs.

 

[Robster65]

Hi Coleen. Welcome 🙂

Wish there was some magic idea we could come up with. I presume you've tried the DWED website regarding the diabulimia ?

It does sound like he's lacking any self-esteem and is full of anger and resentment. Does he have any friends or relate to anyone at all ?

Rob

 

[Tina63]

Hi Colleen

Sorry to hear all you are going through with your son, to some extent I can empathise. My son is 17 and we have been through a similar, though not quite so serious situation these past few months. My son too was only injecting his Lantus (which is kind of amusing as he finds that the most painful of his injections) but of course like your son realised it's the one thing that kept him ticking along, high, but ticking along. He too is a computer addict, drinks Pepsi Max by the lorry load and does go out and buys large bars of chocolates/bags of sweets and eats non-stop. I suspect he doesn't inject too much as he realises if he did his weight would be shooting up. By eating and 'forgetting', his weight is pretty stable. How he hasn't ended up in hospital I don't know. My son was only diagnosed just over a year ago though, so we haven't been struggling so long.

I feel too at times like I am hitting my head against a brick wall. What can you do??? I don't have any practical answers I am afraid. My son has been kept under the children's team for the rest of this year so as parents we probably have more involvement than you with his team. Do you have any phone numbers/email addresses for his DSN? Is it worth trying to get in touch with her? Our DSN has said that if things don't improve the psychologist attached to the team will sit in on his next appointment and take him away for a one to one chat, not really giving him the opportunity to say no, and not having to go back a second time for it where he could refuse. I wonder if your team could offer anything similar?

At Christmas time my son's HbA1c hit 12, and the consultant told him this could not go on. Fortunately he still listens to the team (rather than nagging mum of course) and hasn't yet considered not turning up to appointments, so they said they had to find a way forward. He did admit to not injecting at school as he didn't feel comfortable doing it there, then admitted 'forgetting' once a day made it easier to 'forget' again. They offered him 3 choices, sticking with his current regime and doing it properly, going onto the 'old' way of 2 injections a day, or the compromise he has chosen, of using mixed insulin Humilin M3 in the mornings to cover breakfast and lunch, then Novorapid for evening meal/snacks and Lantus still at night. They also want to see him monthly at the moment, big pain for us, and for him too I suspect, so I am hoping this too gives him the incentive to start getting things under control.

I can't say things are brilliant, I strongly suspect he still 'forgets' his evening/snack Novorapid quite a bit, but at least he is injecting the Humilin as well as the Lantus, and we are starting to get the occasional reading within range. He too before this had gone months without testing. I wonder if your son's team could add something like the Humilin to his regime. I know you still have to get him to do it, but if he has the occasional extra injection of mixed insulin too that would work longer than the Novorapid, so bring some decrease in his levels.

It is a total nightmare being a parent of someone this age. We sway from complete loveliness to almost hating each other, it's horrible at times, yet lovely at others. I feel I want to pick my son up and shake him (no hope at 6'2") and just say DO IT FOR GOODNESS SAKE!!!

Hope things start to sort themselves out soon.

 

[Fazza]

A friend of mine is in exactly the same situation as yourself. She has a daughter who very often goes out drinking and on many occasions has ended up in hospital as she has had too much alcohol for her body to cope with.

Her keytones have been sky-high on several occasions so she's had a ride in ambulance for that as well!

I'm not sure there is a great deal you can do, other than just being there and listening to what you son has to say about his Diabetes. I guess if you tell him to do something he'll automatically rebel and do the opposite!

You can get some great leaflets from Diabetes UK so it might be a good idea to get some from their website and leave them in his room, he can then read them at his leisure.

Do his friends know he's a Diabetic - if they did I'm sure they'd be supportive which would really help?

 

[Adrienne]

Hiya Colleen

I really feel for you. We are a few years behind you yet, my daughter is only 11 but been type 1 for those 11 years.

I belong to the cwd email list which has members with children of all ages, even your son's age so it might be worth joining that and seeing if anyone can help you.

However the reason I am posting this now to you is that someone on the cwd email list just posted a link to an article. I just read it and the first thing I thought of was you, even though I have only read your message once and didn't know how to respond. I guess its a message really from the man involved and his mother and the reality of what can happen. I don't know if you think it may help if you can get your son to read it somehow. It may get him thinking.

Also is he on facebook. There are loads of type 1 teens on there in a secret group, I may be able to get the details. Also if you are on fb there are loads of us on there as well who can give you support but your best bet for friendship and support from other parents with type 1 is cwd.

http://www.littlehamptongazette.co....diabetic_s_life_changing_transplant_1_3500040

 

[Tina63]

Adrienne

Hi, I have just read the link you put above. I am perhaps being a bit thick here, but I thought that type 1 was an autoimmune disease, therefore surely the immune system would attack the new pancreas just like the old one? Have I maybe got that wrong? But I thought that's why pancreas transplants are pointless? Just wanting clarification on that. Surely if that was the answer, every type 1 would go on the transplant list if they so chose?

Thanks.
Tina

 

[Northerner]

Adrienne

Hi, I have just read the link you put above. I am perhaps being a bit thick here, but I thought that type 1 was an autoimmune disease, therefore surely the immune system would attack the new pancreas just like the old one? Have I maybe got that wrong? But I thought that's why pancreas transplants are pointless? Just wanting clarification on that. Surely if that was the answer, every type 1 would go on the transplant list if they so chose?

Thanks.
Tina

Pancreas transplants are very difficult Tina, because of the dangers of digestive enzymes leaking out diring the operation and literally eating the patient - this is why it is safer to do them as a combined kidney-pancreas transplant so the pancreas can be kept intact, but they are not pointless, just very rare and hard.

More frequent these days are islet cell transplants - new insulin-producing cells are transplanted into a persons kidney. I'm not sure about the autoimmune aspects, but anyone receiving a transplant of any kind is likely to need powerful anti-rejection drugs so perhaps it is this that prevents the new pancreas (or rather its beta cells) from being attacked?

 

[Adrienne]

Hi

Just to clarify I didn't post this link to frighten Colleen's son about a transplant necessarily, it was more about the message from mother and son really.


Re the transplant from what else I have heard about this particular story was that he needed a kidney transplant as they were failing or whatever and so they did a pancreas one at the same time.

People do not have pancreas transplants on their own, it is generally with the liver or kidneys if they need transplanting.

So even if this chap had islet thingys it wouldn't have helped his kidneys so whilst in there with the kidneys the pancreas was renewed as well.

I'm led to believe by some stories I hear that they can work well, you do rattle through all the anti wotsit drugs you have to take being a transplant patient though.

I don't know this at all and could be totally wrong but the auto immune bit may have damaged the original pancreas but if you put a new one in there surely there would have to be another trigger (how unlucky that would be) to make that one go wrong and become type 1. Maybe being a transplanted pancreas would fail before an autoimmune thing took hold perhaps. No idea but a thought.

🙂

 

[trophywench]

Both people I know who have had double transplants, it was because of kidney failure. One because she never looked after her diabetes in her teens (now early 30's registered blind and already had one kidney transplant - that kidney was now failing after approx 8 years because she still never looked after her D.) and the other had 'benign' tumours in both her kidneys. As she said 'They call em beingn because they aren't cancer, but how they can describe them as that when they are still killing the kidneys, is beyond me!'

 

[imtrying]

I am a single parent whose son was diagnosed with type 1 diabetes on his 13 th birthday, he is now 19. He has been in hospital with ketoacidosis 3 times, the last time when he was 16. Since then, he only does one injection each day of Lantus slow acting insulin - the minimum to keep him out of hospital - but doesn?t inject quick acting insulin each time he eats so his blood sugar is always much too high. He doesn?t do any blood tests and hasn?t done for years.

He underachieved at school, left with some GCSE?s at 16 to do a catering course at college but he hated it and dropped out without a qualification. He went back to sixth form college to do A levels but didn?t work and was asked to leave. Since then, he has been receiving job seekers allowance but hasn?t made any effort to get a job and doesn?t know what he wants to do.

He has often seemed depressed, retreating to his bedroom to play computer games for hours and days on end, eating junk food, chocolates and sweets and drinking about 6 litres of diet coke a day. I have wondered if he has diabulimia.

I have tried every avenue I can think of for advice on how best I can help him but ultimately, I?ve always been told that it?s his life, his body and that there is nothing I can do to change his behaviour - he has to want to do it for himself.

He seems angry about having diabetes and has been offered counselling and the help of a psychotherapist specialising in diabetes but has refused all offers with the words, ?therapy is for mad people.?

I feel like I?m walking around our home on ?eggshells?, he is extremely moody and difficult to live with, hard to engage in conversation, manipulative, controlling and blaming of me. Underneath, I know he?s a funny, bright, kind and gentle young man but he?s lost and so am I because I don?t know how to help him.

I have good days and better days and sometimes like now, I feel frustrated, worried and at my wits end.

I?d be grateful for any advice.

Hi Colleen. I am not a parent, but am diabetic and have been since I was 10....and I put my parents through this.

Please, please, please can you either get him on here and I for one would be happy to direct message him, or get him to join some sites on facebook?

What he's doing is dangerous (I know you know this already) and unfortunately just telling us doesn't always reach home. I would be more than happy to talk to him and try and help if I can. There is a diabulimia awareness facebook page and I have to say, it's reading people's posts on there with all their complications that now keeps me more or less on the straight and narrow.

From what you've said, he sounds depressed, in denial about his diabetes and is using insulin manipulation. I also was all of these (though my denial I think stopped me from being depressed) I also binged on junk food and sweets and chocolate and cake, and didn't inject so I didn't put on weight. These may be all the same things you are saying to him, but I know when I was going through it all if anyone tried to get involved, all I'd think in my head is 'you have no idea what it's like'.....but I do. So maybe talking to others like me who've been there would mean he'd listen...

I really, really, hope I can help in someway, or that he starts to change his management of his diabetes soon.

If you would like to talk more (to someone who's been through it) please do feel free to drop me a message as well.

Hugs.

 

[colleen]

re: I Don't Know How to Help my Son

Thank you everyone for your replies, I am moved by your kindness and concern.

Not wishing to seem unnecessarily negative, I feel there are few options open to me and that there is very little I can do. I can't make my son seek help or change his behaviour if he doesn't want to himself. He doesn't attend hospital appointments so he doesn't have (nor wants) a team to advise and monitor him. He has few friends and he doesn't want to talk to anyone about diabetes or being diabetic. He has his head firmly imbedded in the sand.

In a rare moment of openess, he told me that he thinks there's no point to anything, he's been told what will happen if he doesn't control his diabetes and as he isn't controlling it, there's no point - I'm not totally sure what he meant but I couldn't get any more out of him other than that he doesn't think he has anything in his life to be happy about.

I can see that he is avoiding growing up and want to help him become a responsible, independent and happy person with a fulfilled life but I'm afraid of doing the wrong thing.

I don't want to be cruel but should I give him an ultimatum, that if he doesn't seek help, get out of bed and look for work and stop using me as a verbal punchbag and make a contribution to the household then I'll take his computer away and if that doesn't work, ultimately ask him to leave?

 

[Robster65]

Hi colleen. I can totally see how you feel cornered and caught between being a mum and a victim.

I'm thinking completely off the wall, but is it possible to have him sectioned on the grounds that he's a danger to himself ?

He might at least be forced to have an assessment and go through some basic therapy.

I'm sorry if this suggestion is upsetting but I can't think of anythign else offhand.

As you say, you either put up with it and watch him decline or take drastic action that involves risk.

Rob

 

[Mark T]

...I don't want to be cruel but should I give him an ultimatum, that if he doesn't seek help, get out of bed and look for work and stop using me as a verbal punchbag and make a contribution to the household then I'll take his computer away and if that doesn't work, ultimately ask him to leave?

I tend to come from the sledgehammer to crack a nut school of thought - which this approach would most definitely be. But sometimes being direct is the thing you have to be.

However... (and it's a big one) you have to be prepared for, if you ask him to leave, he might just do that.

 

[Northerner]

..In a rare moment of openess, he told me that he thinks there's no point to anything, he's been told what will happen if he doesn't control his diabetes and as he isn't controlling it, there's no point - I'm not totally sure what he meant but I couldn't get any more out of him other than that he doesn't think he has anything in his life to be happy about....

It's a terrible shame that he can't be made to realise that diabetes, if you give it some respect and time, does not have to interfere in your life to any great degree. Ignore it though, and yes, it will grind you down and ruin things for you. If he broke his leg would he simply refuse to ever walk again because there was no point? Unfortunately, his probable high BG levels will be colouring his moods and judgement, making it difficult to see the life he can have. Something that always makes me buck my ideas up when I am feeling down about my diabetes is to think about the achievements of Team Type 1 - a world-beating US cycling team comprised entirely of people with Type 1. One of the hardest, most demanding endurance sports in the world and they all have diabetes - nothing is impossible if you look after yourself. I am currently reading a book about a man who has flown around the world solo - with Type 1. He was a fighter pilot in the RAF when he was diagnosed and immediately stripped of his license to fly, but he battled his way through the bureaucracy and managed to get a license again and achieve things any non-diabetic would be proud of.

I do wish he could/would meet with others in his predicament and realise that the dreadful potential consequences of diabetes are far from inevitable these days, and prospects are improving all the time - but you HAVE to take advantage of what's on offer.

Sorry, I wish there was something I could say or do - you are in an awful situation but I hope that one day, and soon, a light bulb will come on and life will become good for him.

 

[Pumper_Sue]

Thank you everyone for your replies, I am moved by your kindness and concern.

Not wishing to seem unnecessarily negative, I feel there are few options open to me and that there is very little I can do. I can't make my son seek help or change his behaviour if he doesn't want to himself. He doesn't attend hospital appointments so he doesn't have (nor wants) a team to advise and monitor him. He has few friends and he doesn't want to talk to anyone about diabetes or being diabetic. He has his head firmly imbedded in the sand.

In a rare moment of openess, he told me that he thinks there's no point to anything, he's been told what will happen if he doesn't control his diabetes and as he isn't controlling it, there's no point - I'm not totally sure what he meant but I couldn't get any more out of him other than that he doesn't think he has anything in his life to be happy about.

I can see that he is avoiding growing up and want to help him become a responsible, independent and happy person with a fulfilled life but I'm afraid of doing the wrong thing.

I don't want to be cruel but should I give him an ultimatum, that if he doesn't seek help, get out of bed and look for work and stop using me as a verbal punchbag and make a contribution to the household then I'll take his computer away and if that doesn't work, ultimately ask him to leave?

Hi Colleen,
have admit to not reading all the replies, so someone will prob have already suggested this to you.
Would you consider writing to your son's GP in confidence as a concern for welfare and have a home visit for him?
Your son is obviously crying out for help and badly depressed due to his high blood sugars everything will also seem even blacker than would be expected, so nothing will seem reasonable to him at the moment. There is pos a comunity DSN who can come for home visits as well.

 

[Twitchy]

I was just wondering - it might be worth calling DUK to see if there is a young people's support group in your area? Maybe if you could somehow get him to go & meet some other teens in the same boat he might start talking to someone.? I appreciate to get him to go might require some blatant blackmail along the lines of 'if u don't go the computer games are being taken away, if you do, i'll buy you a new one'? Is there a family member he trusts & respects who you could maybe ask to help put across to him how his behaviour is unreasonable & the effect it's having on you? Or is there a bug juicy carrot you could use maybe (hols?) to bribe him to share his test / dose results with you & demonstrate that ye is at least starting to think about things?

I hated my diabetes most when i felt impotent to control it - i wonder if not seeing an immediate reward to any effort testing & injecting is putting him off? Has he done anything like dafne, or could he be persuaded to gicd ut a go?

I really feel for you - i hope you have someone(lots of people!) supprting hou through all this too, it is so distressing when someone you love behaves like this. Xx

 

[Hanmillmum]

Hi, from what you describe of your son's behaviour, his apathy and dispondance, he is harming himself via neglect - he sounds v depressed, I agree with Sue re: approaching his GP with your concerns as a first port of call, would your son accept help for his mood, an assessment from mental health services? Some psychological support or anti-depressant therapy ?
If this could be addressed it may go some way to motivating him to look after himself, and his diabetes.

Best of luck, must be incredibly difficult for you x