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Newbie - Mum of diabulimic daughter..HELP!!

R

rio

Newbie
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4
Hi everyone, new to the site so hello to you all!

My daughter was diagnosed with diabetes at 12 (not a great age with hormones kicking in :( ) and developed "disorded eating" pretty soon after. She is nearly 18 and has been abusing insulin ever since. How she has managed to survive until now is beyond belief and is currently taking basal insulin to try and retain some stability. However, she is still abusing and has now confided she is taking it 3 days a week Mon,Tue, Wed, and then stopping. She is binge eating thur, fri, sat, sun and running deliberatly with high ketones to get rid of the weight she has put on in those 4 days. She can lose anything up to a stone in a week. :( She has been staying with her father who is in complete denial there is a problem, but we have spent the weekend in tears where I have managed to get her to admit exactly the extent of what she is doing so will obviously be acting immediately. I am currently researching as much as I can to find the support she needs.

We have been through the normal procedures to the point I am exhausted for looking. She has had psych help (she has up until now not responded particularly well) been referred to the eating disorders units and turned away because her BMI is not low enough (she is diabetic for gods sake and needs to eat!!) and those units are not really suitable anyway. Considering one in 3 (Yes thats about 36%) of diabetic teenagers (mostly girls) are DYING of this illness and there is no specific help absolutely appalls me. This is major problem in the UK and one which is clearly being overlooked. How many kids have to die before they do something? :evil:

If anyone can offer any advice, know of any units in the UK which might be able to help, any support groups, any campaigning going on please tell me! I am now on a mission to get this sorted and addressed so watch this space!! :wink:

Diabetes is tough enough to live with - having this on top is a nightmare. :?

I wish you all well and thanks for reading. xx
 
Hi Rio,

Sorry I have no ideas to help you, but just wanted to say hi and how sorry I am for your worrying situation. Good luck with your mission!
Sue
 
Thanks sue

Yep, its a toughie. Even if I just raise awareness on the site to parents of diabetic children and to know what to look out for it's a start. Thanks for your support anyway.

xx
 
sorry i too cant help you but welcome and good luck :wink:
 
Hi rio,

I have heard of this in the past, particularly affecting young women who face particular stresses conforming to the tyranny of an idealised body weight and shape. Your daughter has worked out how to harness the power of insulin, or rather the lack of it, to help her control her weight. I'm certain she's bright enough to realise the lasting damage she will do to her body without insulin.

Perhaps that's part of the dilemma, the power to dramatically affect body weight by abusing her medication gives her a degree of control that is denied to non-diabetics. I'm type 1 also and I sympathise with her predicament. We are burdened with an incurable condition and anything which gives us some degree of control over it can be abused without the right sort of long term care.

If she now associates insulin use with weight gain, and she's absolutely right about that link incidentally, maybe she can be persuaded to eat the sorts of foods which require the least insulin while providing proper nutritional value. If she feels her weight is an issue as important as her diabetes then restricting her carbohydrate intake, but increasing her protein and fat consumption might be a reasonable compromise.

Sorry, I know very little about eating disorders and my thought may be too simplistic to be of much use, but I hope you are able to find some support for this terrible problem.

All the best,

fergus
 
From what I read many diabetic women admit to cutting insulin either now or in the past in order to lose weight. As you say its not uncommon but for a parent it must be heartbreaking.
I've spent some time searching for resources, but you're right there seems to be nothing in place anywhere which is surprising given the possible numbers involved..
The only people I found (and you've probably found them already) are beat which help people with eating disorders, there is no mention of diabulimia on their website but they do briefly mention diabetes in assciation with eating disorders. They have a helpline so they might be able to offer you some suggestions.http://www.b-eat.co.uk/HelpandSupport/ContactourHelplines
Other than that have you contacted Diabetes UK, they too have a helpline and may be able to offer suggestions http://www.diabetes.org.uk/How_we_help/Careline/

Good luck.
 
Unfortunately, I have no answers for you but I just wanted to say welcome to the forum. I do hope you can get the help you need for your daughter. I can tell you are a really caring Mum and as a parent myself I can understand your anguish at what your daughter is doing.
I wonder if anyone on the site has a diabetic daughter of a similar age, who could be an online buddy to chat to and advise. Youngsters often take advice better from a peer than an adult figure.(Though professional help too would be ideal.) Just a thought.
I wish you both well.
 
Hi Rio
I'm 25 years old and been diabetic 18 years, I went through 5 years of high sugars monthly admissions for diabetic ketoacidosis doctors kept telling me I had diabulimia (not called that then just a troubled teenager) I didn't but I know the trouble that can come after what your daughter is doing.
If shes ready to listen to someone be honest and tell her thr truths of it I'm more than happy to offer my help. It may mean more to her coming from someone whose been through it and close to her age.
Good Luck!
 
Hi, Can I sugest you contact your local Youth Service, they often have a wealth of information and contacts with relation to lots of issues that affect young people. There information is also specifically aimed at this age group. I woundn't imagine for a second they would have any on diabulimic but they are sure to have something on eating disorders, local suport groups, health eating etc. It might help a little.

Hope you find this site as usefull and suportive as I have over the past few months. My 9year old daughter was diagnosed recently.

Good Luck, and don't forget to get some rest yourself. Your the greatest source of information and suport she has.
 
Thanks so much for your support today and great words of advice and comfort. I will certainly take some of the comments on board. She lives on virtually a carb free diet on the non bingeing days, excercises 3 times a week at the gym and is a very bright, articulate girl who knows more about eating well and is a total expert regarding diabetes.

I think chatting to someone who has come through the other side might help. I will show her the postings today and hope that she takes on some of the comments and realise that there is support out there, particularly from other diabetics who also struggle from time to time.

It has been a tough weekend and I am worried that we will continue to bang our heads against the wall in trying to get her the help she needs. I start again tommorrow on the long journey of finding out what is out there.. :? Will keep you posted.

Once again, thanks so much - it's so good to know that people care. :D xxx
 
Sometimes if you confront your monster, he turns out to be just a tall bloke with a skin condition and a hangover.

Your daughter needs to be honest with her diabetes team about her fears and what she's been doing, then work with them to find a regime that suits her. A DAFNE-style regime would put her in control but safely, eating if, when and what she wants, following virtually any diet plan, coping with exercise, alcohol etc with no guilt, no lies and no nagging.

DAFNE means adjusting basal insulin so blood sugar stays level 24/7, then injecting short-acting insulin to correct any highs and cover carbs as and when eaten. Therefore no need for snacks/meals at fixed times, many of the old rules disappear. Then it’s her choice to skip meals or have carb-free meals without insulin, or have carbs with insulin. Takes time and effort at first, but once established should be better all round. She can find the level of food, insulin and exercise she needs to maintain her chosen weight. See if you can get her referred to a DAFNE-trained doctor and nurse, to work out a plan for her. If the team includes a nurse who has type 1 themselves, so much the better. http://www.dafne.uk.com has a list of centres but if none listed in your area do email them for an update. Also some hospitals have their own schemes, not using the Dafne name but same idea.

Hope this helps
Sue
 
All I can suggest is reminding or telling her of the consequences:

Blindness
Kidney failure
Neuropathy
Etc.

There was a girl at... I think Caledonian university, who at the age of 23 had lost her eyesight because of untreated diabetes. Tell her that one.

Also, consider that it may no longer be a matter of actual desire for weight loss - and could have developed into a habit, a routine, that brings emotional comfort.
 
lionrampant said:
All I can suggest is reminding or telling her of the consequences:

Blindness
Kidney failure
Neuropathy
Etc.

There was a girl at... I think Caledonian university, who at the age of 23 had lost her eyesight because of untreated diabetes. Tell her that one.

Also, consider that it may no longer be a matter of actual desire for weight loss - and could have developed into a habit, a routine, that brings emotional comfort.
Click to expand...

Your 1st point, I don't think that will actually make any difference, she will know it already. I was diabulimic for years, though it wasn't called that then. My parents didn't have a clue or if they did they didn't confront me with it, giving me licenece to carry on for years. I was diagnosed just before my 13th birthday. Had first ITU visit at 17, second at 24 and last one at 27. The risks were stated and stated and sated. I could actually deliver a wel informed lecture to HCPs and diabetics alike, but actually it doesn't really make a difference. I have come out of it, went back to it with Post natal depression, came out of it again.

I'm currently a university student, doing well on the outside. Inside i am a mess, which brings me to your second point. This time weight has nothing to do with it. I have my finger firmly set on the self destruct button and I am not sure how to get it off. I was totally honest with my nurse yesterday, who i saw for about 90 minutes. I arrived after being so ketotic that I had to stop and vomit in the carpark. She wanted to me stay in, but I refused. I actually have no idea what its about this time. I have just tested my BM, 25.9, ketones +++. I am on pump therapy, my basal is switched to 50% and I haven't bolused properly for over a week. I had to yesterday in front of my nurse before she would let me leave. I contacted her as agreed 2 hours later, BM now 11, ketones reduced to ++, then I had a bm of 3.2 in the evening, that freaked me out, I took the pump off and binged.

I don't undersatnd any of this. Not at all.
 
Hey, iv put a few post on recently about problems i had a few years ago woth my diabetes, i also had the eating problem, i stopped taking insulin for 5 months to loose the weight, i ended up in hospital for a few weeks, they torl me that i was so sick that if i had caught the common cold i would have died!! i weighed under 6 stones, and looked horrible. with my blood sugars being so high..usally around 25-30 i stopped eating and becuase my stomach shrunk every time i tried to eat i simply couldn't. in 3 weeks (just before i went to hospital) i only ate half a slice of toast!! i slept all the time, and counldn't even walk up a flight of stairs without getting dizzy and falling over. the damage i did to myself will always be there, and yet 4 years later (im 19 now) i still do the same thing, not quite to the extend i did, but i miss injections and eat high sugar food, in the hope that i will always stay slim, please no body tell me that what im doing is silly, i know already, and please dont tell me the damage im doing..i already know that!! im currently seeing the hospital every month to try and get my sugars down, im doing ok at the moment but as soon as i feel a little bigger, or fatter i cut out the insulin, or self-harm, neither or which i like doing. iv been to shrinks and all types of doctors, but i just cant bring myself to stop. unfortunitly my mum tried everything to help me, but even she gave up.i now have a 2 year old daughter and i want to live to see her grow up, but im still struggling.
Your right there isn't anywhere to help diabetics with eating disorders, when i tell people about diabulimic they don't believe me, and even some doctors dont agree its a condition which is just as serious as bulimics or anorexias. i hope your daughter gets out of this horrible routain shes in, but please do not preach her, it will only make it worse.x good luck :wink:
 
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