Hello a little advice needed

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SteveD

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Hello
I have just found this site and need a little advice.
My daughter was diganosed with type 1 last year at the age of 24. She has not handled this very well preferring to use her condition as a weight loss / body imaged altering diet. She does not test or inject consistantly during the day, saying she can control her sugars / levels by constantly drinking water. She has lost about 41/2 stone since being diganosed. Any advice for my wife and myself to help her see what she is doing to herself would be gratefully received

Thanks
Steve D
 
Hi Steve, welcome to the forum. Sorry to hear of your daughter's problems. It sounds as though she may have something called 'diabulimia'. This page explains more : http://www.diabeteshealth.com/read/...a-what-it-is-and-how-to-treat-it/?isComment=1

It essentially means that, by not taking an appropriate amount of insulin with her food, her body is forced to burn fat, resulting in weight loss. There will also be weight loss from dehydration, as her body will try to flush the excess sugar from her system in her urine. Also, in burning fat, a by product called ketones are produced - in the absence of sufficient insulin, these can be extremely dangerous and can result in a condition called ketoacidosis, which can be life-threatening. The body will also try to flush out ketones in the urine, hence your daughter drinking a lot of water.

It may be that things are not quite this bad for your daughter, but she has had significant weight loss. I think she needs the help of a health professional as using diabetes in this way is highly dangerous.
 
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Hi Steve

Welcome to the forum, although of course sorry you've had to join us...
I don't necessarily know what you can do to turn it around for your daughter but maybe my experience nay be if some help....
I was diagnosed with type 1 at the age of 21, so not much younger than your daughter. I found it a massive shock and very much rebelled against it for the first couple of years. I was very inconsistent when it came to taking my insulin, I would go weeks on end without testing. Looking back now I don't know how I managed to survive, but if course somehow I did!
At the time the scare stories and looming complications didn't really affect me, I felt so helpless and that the diagnosis was now controlling me that not doing what I should felt like the only way to get some control back. Everything seemed so out if my hands that I suppose I didn't really believe that anything I did could ever change anything anyway, so why bother...
I think the two things that triggered turning things around for me were the opportunity to meet other young diabetics. That I guess showed me that there was a more positive option. Second, the chance to go on the dafne course was central to me changing my attitude. If you haven't come across dafne it is a diabetes education course, they have a good website if you want more information. It showed me that far from being a trial, spending a little time controlling my diabetes actually stopped it being such a burden.
Of course what happened to me may be very different to your daughter's situation. If she's losing that much weight I would guess she has very high blood sugars a lot of the time and is likely risking dka, do you know what sort of readings she is getting? What part of the country are you in? Several forum members have/are setting up support groups in different parts of the country, do you think shed have interest in meeting other diabetics, or signing up to this website? Does she have much support from the hospital?
 
Hi Steve.

I've only just joined but I've been type 1 diabetic for over 30 years and know effectively the body can get rid of fat, turning to muscle once that's exhausted. As Northerner says, the ketones are extremely toxic in concentration and eventually damage the renal system.

It's not uncommon for diabetics to be in denial and try to carry on as if nothing's wrong but as has been pointed out, it sounds like there are some problems with her body image.

I also think you need to consult your diabetes specialist or maybe GP to find a clinical solution.

You must be very worried yourselves but hopefully you'll get some answers here.

Rob
 
hi steve and welcome to the forum cant reallly add to what the others have said ...good luck x🙂
 
Hello there, sorry to hear the trouble you're having. I was diagnosed aged 26 and I remember going from 7stone 12 at diagnosis to 9 stone 8 in about a month, which was quite a shock. I'd never been that heavy before, but I managed to get back down to my normal weight after I did a DAFNE course at the diabetes centre and then I was able to tailor the insulin I took to food, and eat less carbs and exercise more to lose the weight.

I think it would be a good idea to ask about courses at your daughter's clinic - as well as DAFNE I went on one for newly diagnosed type 1s where they taught us about the long term complications of high blood sugar - scary but she needs to know. Also maybe if you found a local support group or found some stories online about people who have complications that might give her a wake up call? For example, I remember seeing a TV programme a few years ago about a girl who went blind in her 20s from diabulimia - shocking I know, but it might help your daughter realise it can be avoided by taking her insulin. Also if you search on here for Lee Nevitt, he is a member who speaks very openly about how he ignored his diabetes symptoms for years and now has neuropathy as a result. He has made a documentary and written articles and blogs to try to help people learn from his mistakes.

Please let us know how you get on, I hope your daughter is able to accept things eventually.

Have you also thought about her seeing a counsellor? Or psychologist?
 
Thank you all for your advice.
Aymes - Your experience sounds exactly like my daughter, all about control or rather lack of it. She has already been hospitalised for dka which we thought would be a wake up call, but she still carries on as before.
She lives in Southampton and I am trying to make contact with a diabetes UK group there. I will look into the dafne course. She does have support from the hospital but does not let any of us go to the appointments with her.
 
SteveD said:
Thank you all for your advice.
Aymes - Your experience sounds exactly like my daughter, all about control or rather lack of it. She has already been hospitalised for dka which we thought would be a wake up call, but she still carries on as before.
She lives in Southampton and I am trying to make contact with a diabetes UK group there. I will look into the dafne course. She does have support from the hospital but does not let any of us go to the appointments with her.
Click to expand...

One of our members has started up a group for 18-30s in Southampton Steve, so that might be a good group to join up with if she'd like. This page gives a link:

http://www.circledrocks.co.uk/Other-Groups---Support-UK-Wide.html

There is a Diabetes UK group in Southampton, but it's only recently reformed and not very active. The DUK groups also tend to have an older membership.
 
difficulty is going to get her to listen ...if she doesnt want you involved ....i feel for you at the moment not that my daughter is a diabetic but at nearly 20 she feels anything we suggest is controlling !!! but please persevere im sure if she realises there are support groups out there NOT run by the professional medicial system but by young Diabetes who understand where shes comming from it may help ...its all on fb aswell if shes on fb maybe that might be easier way for her to access x
 
Hi Steve

I was diagnosed at the age of 21, before this I already had bulimia. Initially after my diagnosis I managed to get control of the eating problems, but it was not long until they came back with avengence. Is your daughter seeing anybody at all. I eventually confessed what I was doing and saw a CPN who was absolutely fantastic.

Unfortunately if your daughter can not see that she has a problem there is not alot you can do. Your daughter needs to see that she is going to cause herself long term problems if she does not treat her diabetes properly, but you obviously know that already. Do you know what her hba1c is?

This must be v hard for you and your wife too, I hope she sees she has a problem soon.
 
http://www.childrenwithdiabetes.com/activities/UK2010/

Take a look at this link. I know there has been a cancellation by one family of 3 people - so you might be lucky if you ring them asap. This is the second time this conference has been held here and by all accounts it is motivational and inspiring - and is open to any age and anyone in the family can go. It might be worth a try? Perhaps you could bribe her to go with you and maybe promise that you wont nag her about diabetes as long as she goes to this for 1 weekend. I think it will help to change her mind about how she is abusing her diabetes. It doesnt have any effect on her if its her parents telling her about future complications - but she might listen to 'cool' young adults who have a wealth of experience and advice that she could take on board. Of course, she may actually not be interested or even listen whilst she is there - but it *has* to be worth a try?🙂Bev
 
Hi Steve and welcome to the forum.

It is great you and your wife are so supportive of your daughter. She is a similar age to my grown up son.

I appreciate you are worried and want to help your daughter, but she has to acknowledge there is a problem before she can ask for help. Be there for her and get all the information you can. The you will know who to ask and where to start.

All I can do is echo the advice of others and wish you good luck with everything.
 
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