eating disorders and type 1 diabetes

[louise65]

my almost 16yr old daughter has had diabetes since age 9. over the last 3 months she has restricted her diet, over exercised and omitting a large proportion of her insulin. as she was not at all overweight to start with she is now unhealthy low bmi. she has been referred to an eating disorders unit were she is currently being assessed. the majority of her weight loss has been achieved by not giving her insulin. her last hba1c was 13.obviously she has this very powerful fast weight loss tool in her hands and i cant,or the medical staff,get through to her the damage she is doing. am at a bit of a loss, wondered if there were any books out there that address this particular problem. any advice would be great thx in advance, louise

[louise65]

sorry if i went off a little but am at the end of my teether with all of this.she doesnt let me near her diabetes she is very secretive, hides her moniter which she only uses to check that she has ketones in her blood to check she will continue to lose weight.she is in and out of hosp like a yoyo but seems unable to stop this behaviour.its very hard to watch the child you love destroy herself and feel there is nothing you can do to stop it.she is refusing to engage with the docs at the eating disorders unit and if she continues may be admitted against her will[ or mine for that matter] anyhow am not in a good spot so will sign off for now.louise

[JDRF Volunteer SG]

I am so sorry. I was writing partly to YOU, but partly to answer the folks who are trying to lose weight who will be reading this and may get the idea to try this very dangerous method. The websites I listed may be helpful to you, for they all address this dangerous practice, which seems to be something newly popular among diabetic young women. There is a real misconception among many that insulin makes you gain weight, which is not true. Being healthy, and taking insulin to cover the missing insulin in our own bodies does not make us fat, but allows the body to use the calories that we eat.

Now, to your daughter's emotional problem... I doubt that there is a simple solution. Having read those blogs that I sent to you, it seems like once this has been started, it is VERY hard to stop. Even after complications set in, the habit is hard for these women to break. Counseling is absolutely essential, and it sounds as if you are doing everything right to help her. You had not mentioned over-exercising in the first posting, and this of course must stop. If your daughter is not rebellious, you may find that you have to take away some of her freedom in order to help her physically while the counseling is underway. Doing glucose tests with her and managing her insulin shots with her, sort of as a team if she is not angered by it may be necessary, for this takes away the freedom to abuse herself. And eating meals with her, too, to make sure she gets enough calories to survive. From what I have read about anorexia, it often is a young woman's cry for control, but she cannot have total control until she can handle it. Part of the cry for control may indeed be due to being diabetic and having to do all the carb-counting, glucose testing, and insulin shots that this requires. Many doctors think that ALL type 1 diabetics should see a counselor, for depression is VERY common.

As for what I wrote about feeling "fat", and about my own daughter at this age, my point is that many girls at this age FEEL fat when they aren't. The maturing body is different from their coltishly thin earlier years, and they feel fat when they develop curves. The point was to help you perhaps get a bit of a handle on how your daughter's brain is working to make her feel that she needs to lose weight when she really doesn't. Understanding how she is thinking is so important for you, the very deeply caring Mom, for there are some insecurities that are the root of the problem for anorexic girls. It sounds as if you already are aware of all of this stuff, but some readers probably are not as educated about it, and so I am writing to other readers of the blog as well as to you.

The real question that you are asking, it seems, is "how do I get through to this girl"? And it seems to me that maybe education is part of the answer, hence the websites I sent to you. The blog in particular might be helpful to her if she reads that she is not alone with this problem. Many young diabetics write to us at the JDRF website complaining about feeling very much alone, and this could be part of her problem.

I dunno if you checked out that last website that I offered you, but it seemed that there was a lot of information offered by folks posting about having the same problem that your daughter does. Do take some time to read through the postings and take note of some of the offerings. She is not alone. I know you are worried about her, and as a mom, I understand your feelings. I hope that her counselor can help her sort through the reasons behind the behavior and that she can get "well" in this area. Maybe some other folks will post here and give you more.

[louise65]

she is stick thin and very underweight, have been advised my medical staff she must not exercise particularly as she runs with very high blood ketones and over exercising is part of her eating disorder. sorry but i feel you have missed what i was trying to get across, perhaps i didnt write clearly enough, this child is anorexic and certainly does not need further diet and weight loss tips! this is an illness as much as her diabetes is, she is frequently told by docs that she wiil not survive, let alone also being told of the complications she faces,she cannot take it on board.this is so disheartening and makes me feel even more isolated than i did previously,no one understands. she is being seen at the eating disorders unit who understand that but not so much the diabetes, there seems to be no place for her.

[JDRF Volunteer SG]

Wow, this is so tough. Those of us who volunteer for the Juvenile Diabetes Research Foundation can attest to the horrors that are related to us by young people who didn't think that high glucose levels were hurting themselves until irreversible complications set in. I remember one 18-year-old who contacted us after she developed diabetic cataracts (yes, this is a complication caused by high blood sugar) in both eyes and was facing surgery. And another young man who has gastroparesis and is now being fed by a stomach tube because his digestive tract's nerves have been so damaged by high glucose levels that he cannot digest much in the way of real food. He is in his early 20's. Tell your daughter about these folks, and that they write to tell us that they would do ANYTHING to go back and change their diabetes control.

All that being said, many diabetic kids deal with depression, for we have a disease that takes a lot of work to maintain. No breaks, ever. Your daughter's problem has a name: diabulimia. There is a lot of discussion out on the web about this problem. I am going to copy and paste some links here for you:

http://diabetestalkfest.com/blog/?p=61

http://en.wikipedia.org/wiki/Diabulimia

And finally, the site below is a blog about this problem. Many women have written in it and many offer websites with information, telephone numbers, and locations of recovery camps. Lots of good information there, so please check this one out:

http://womenshealthnews.wordpress.com/2007/06/18/diabulimia-new-eating-disorder-among-diabetics/

And one final thought... The woman who wrote the article in the first website I gave you suggests that while a person with this problem is dealing with the emotional issues that cause her to want to lose weight (with a counselor), the parent needs to take control of the diabetes management. YOU give her her shots just like the nurses do in the hospitals. While of course she needs to take control of her own diabetes as she grows up and will be leaving home, you can help her while she struggles through the counseling by taking the load of the insulin injections off of her shoulders. Just as a temporary aid.

Now, as a type 1 woman myself, I can attest to the fact that we can lose weight while keeping good glucose control. But we have to eat less and of course adjust our insulin doses appropriately for the "diet". Perhaps she needs to be aware that this is true. And to be encouraged to talk freely with you if she feels she is gaining too much weight. At her age, the maturing body is seen by many girls as being "fat". My own daughter felt this way when she started developing curves, and she was not diabetic. She and I agreed that I would help her by telling her when I thought she needed to slim down or when she seemed too thin. And I helped her find light foods to eat that were healthy when she felt that she needed to lose weight. The reality is that many of the foods that teens love to eat now are high in calories, and our teens are also not all that athletic these days. Encouraging your daughter to take up a sport might help, too.