Worried about my son

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Liz1954

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Hi 🙂 I'm new here so forgive any mistakes!
I'm really worried about my son - he's been type 1 diabetic for 16 years, diagnosed age 10. He lives at home with me and we're more like best friends, he's my inspiration. He's never had the best control and always had a high hba1c (8.5) but in the last 2 years he's had diabulimia? and his last hba1c was 15.5. He doesn't inject the novorapid at all with meals now and will only inject 10 units of levemir instead of the 44 that the GP recommend, he drinks about 5 2L bottles of water and then other high sugar drinks every day, he sleeps most of the time and is always passing out at home, the toilet is often sticky or you can see where there's sugar dried in it, Im so worried about leaving him in the house alone or him getting DKA again, he always has ketones and readings of 20 - 30mmol on the finger prick tests, I want to help but he's an adult and is adamant he doesn't want to have treatment so worried about the complications, is there anyone who has advice of what I could say or do to help him control the diabetes better?
Thanks to anyone who has been through this or knows a better way to cope with it , Liz
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HI Liz,
Welcome to the forum.
This situation is totally outside my experience, but just wanted to say your son is lucky to have such a caring Mum and I am sure someone will be along shortly with suggestions as to how you can help.
Best wishes to you both in 2019.
 
Hello Liz, difficult situation for you, is it he refuses to accept he is a Diabetic or thinks it will all go away eventually? Your post is very concerning, your next step is to contact his DSN or Consultant for a direct consultation, I think in this case mum knows best. You need guidance from professionals his figures are very high, DKA will be inevitable if his regime is not controlled, please do this tomorrow. He`s still a young man and has a lot of life to look forward too as do you, please take care its only a phone call but be honest like you have been with your post. Kindest regards.
 
Hello @Liz1954 and welcome 🙂

I'm so sorry to hear about the worries you have about your son and his control. There is a great group dedicated to helping people with diabulimia and other disorganised eating problems and insulin manipulation. Here is the link http://dwed.org.uk/about-us-faq/. I would recommend contacting them as they are so helpful.

What has your son's diabetes team said to him in terms of getting help to get control back ? Do you know his reasons for withholding insulin, is he worried about his weight, body image etc? There are some excellent young peoples diabetic clinics at various hospitals where they are clued up on the issues facing young adults as they grow up and start to challenge things. I found the transition from paediatric care to adult diabetes clinics really hard and couldn't cope with the more blunt approach to what would happen if I didn't get good control. To be honest that approach didn't help me and I have been though the despair of years diabulimia. High glucose doesn't stop you in your tracks like a low blood sugar so you can continue for a while feeling desperately ill and tired. It alters your mood and how you look at things, I was so lethargic and completely closed to any suggestions. It took a lot of help from an eating disorders clinic for me to get on track. It took a long while for me to clamber out of my situation but when I look back I do wonder what on earth I put myself and my family through such anguish for. With good help and support diabetes is doable and once you get it knocked back into shape it doesn't need to rule the world.

Is there any one your son will confide in? Just saying out loud what you are actually doing is a huge burden lifted. Does your son work or drive? Things like keeping a driving licence rely on good records showing good control. Have you been able to tell him how much his situation is frightening you ? Can you offer to accompany him to any appointments through this really tough time ?

He isn't alone in this. It is quite a common situation in the age group 15-30. He doesn't need to feel guilty or ashamed that he is in this spiral and there is help around. This information from Diabetes UK is useful https://www.diabetes.org.uk/guide-to-diabetes/life-with-diabetes/diabulimia . The video clip is very informative covering the whole muddle of feelings, loathing having to manage diabetes etc.

I wish you both well. There isn't a quick fix but your son can recover from this period with help and support.
 
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There's a charity whose name is Diabetics with eating disorders - DWED. They are there for you and your son - please, please contact them because they are the very best folk to help you and point you in exactly the right directions as well as having personal experience in the subject matter and therefore knowing exactly what you're experiencing.

I'm extremely sympathetic - what a nightmare you are trying to cope with - but I do know that the NHS isn't exactly marvellous dealing with any eating disorder and add Type 1 into the mix, it gets harder to find the right help because people have to comprehend the full impact of both conditions. I sincerely hope you can find the help that you both need and deserve.
 
Flower said:
Hello @Liz1954 and welcome 🙂

I'm so sorry to hear about the worries you have about your son and his control. There is a great group dedicated to helping people with diabulimia and other disorganised eating problems and insulin manipulation. Here is the link http://dwed.org.uk/about-us-faq/. I would recommend contacting them as they are so helpful.

What has your son's diabetes team said to him in terms of getting help to get control back ? Do you know his reasons for withholding insulin, is he worried about his weight, body image etc? There are some excellent young peoples diabetic clinics at various hospitals where they are clued up on the issues facing young adults as they grow up and start to challenge things. I found the transition from paediatric care to adult diabetes clinics really hard and couldn't cope with the more blunt approach to what would happen if I didn't get good control. To be honest that approach didn't help me and I have been though the despair of years diabulimia. High glucose doesn't stop you in your tracks like a low blood sugar so you can continue for a while feeling desperately ill and tired. It alters your mood and how you look at things, I was so lethargic and completely closed to any suggestions. It took a lot of help from an eating disorders clinic for me to get on track. It took a long while for me to clamber out of my situation but when I look back I do wonder what on earth I put myself and my family through such anguish for. With good help and support diabetes is doable and once you get it knocked back into shape it doesn't need to rule the world.

Is there any one your son will confide in? Just saying out loud what you are actually doing is a huge burden lifted. Does your son work or drive? Things like keeping a driving licence rely on good records showing good control. Have you been able to tell him how much his situation is frightening you ? Can you offer to accompany him to any appointments through this really tough time ?

He isn't alone in this. It is quite a common situation in the age group 15-30. He doesn't need to feel guilty or ashamed that he is in this spiral and there is help around. This information from Diabetes UK is useful https://www.diabetes.org.uk/guide-to-diabetes/life-with-diabetes/diabulimia . The video clip is very informative covering the whole muddle of feelings, loathing having to manage diabetes etc.

I wish you both well. There isn't a quick fix but your son can recover from this period with help and support.
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Hi Flower, thanks so much for the reply
I've heard of Dwed online and they look far more helpful than some of the doctor's advice! They just keep saying my son is non compliant or lazy with his diabetes care, definitely more serious than that! I went with him to the last appointment as he's never happy about going and often skips them altogether, the nurse complained about his sugars being 17.8 and him being too skinny, no suggestions though :/ it is definitely about his weight as he was bullied in school about being overweight and after becoming diabetic and gaining a lot of weight then. I was really happy whe he started a fitness program and healthy diet - I even joined in! Sadly I think that was the start of him skipping insulin, he was a healthy 11 stone but kept wanting to lose more weight, I didn't think much about it until he had keto acidosis and had to go into hospital and was 8 stone. He has openly talked to me about not injecting for a while but sometimes I wish he'd tell the doctor or diabetic team as it worries me so much, hopefully someone at Dwed can get him to talk about it reasonably!
 
Hi Jenny,
Thanks so much for the advice, I'll definitely try Dwed
Seeing him almost collapsing or having to go to hospital with keto acidosis and having drip lines is so scary, also seeing documentaries about people dying or losing a limb from this makes me so upset, I just can't imagine why he would do this, I know not eating enough or too much exercise is really common (most of us did it when we were younger! Everyone wanted to be like Twiggy) but skipping insulin is so frightening as a parent, especially when your child is grown up and you can't do a whole lot to help unless they want to! It's sad but true the NHS is still clueless about how serious it is and how they still call it non compliant or just lazy diabetes control, when somebody loses 100 pounds in a few months and has 2 collapses it's obviously more serious than missing 1 or 2 injections but they never really listen! I'll get in touch with Dwed and see why help they offer as they look like they really understand it better than I do,
Thank you so much for the help And wishes, really appreciated right now 🙂
 
Hi Liz1954,

Have your son's clinic mentioned diabulimia at all? Underweight with persistently high glucose and DKA episodes after previous better control should ring some alarm bells especially as diabulimia is now talked about more openly. Could your son write it down for the clinic or send an email about his situation. Saying it out loud to my consultant was the turning point for me to start to get appropriate help instead of being told I needed to pull my socks up and improve my control.

It is incomprehensible to someone looking on as to why an insulin dependent diabetic would deliberately withhold insulin . It is the most precious drug that has saved our lives yet for an incredibly complicated web of reasons and emotions that override normal thoughts we start to withhold it. I knew what I needed to do to help myself but I couldn't do it. Getting out of it took a few tries and a few years as obviously you do put weight on initially as you are generally very underweight. I had to grit my teeth and do it for my survival but it is a very powerful illness to start to overcome.. I still can't say exactly what pushed me down that slippery slope but sadly insulin manipulation has devastatingly effective results in terms of weight loss and that control is addictive despite the very high risks to health. :(

Please speak to the people at DWED for advice. Diabulimia is a niche complex illness that requires specialist help and I really hope your son can get that help and understanding to start to get to a better place.

Please let us know how things go for you both. Best Wishes. 🙂
 
please make sure and get him help from somewhere .Lifes to short i lost 2 brothers who were very slack with checking bgs etc.they rarely tested sugar levels and basicly guessed insulin intake he really needs support from diabetes specialists
 
Take care. Hope you get some help!
 
Hi Liz, we do understand your worries about your son, so do give our Helpline team a call to talk through these concerns in more detail. Tel: 0345 123 2399, Mon-Fri, 9am-6pm. As others have previously mentioned, you can also get support with diabulimia from the charity Diabetics for Eating Disorders (DWED). DWED run two Facebook groups – one for people with an eating disorder and one for family, friends and carers. More info and contact details can be found on our website here: https://www.diabetes.org.uk/guide-to-diabetes/life-with-diabetes/diabulimia

All the best to you and your son
 
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