Teen with T1D and eating disorder

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HaveFunMom Posted: Tue, Jul 9 2013 9:12 PM

Help.  My daughter was diagnosed with T1D 2 1/2 years ago.  She is now 15.  After being in the PICU at diagnosis...she was in decay KTA, and only 72 pounds, she regained 19 pounds in 3 months.  A nurse in the ER told her insulin would make her gain weight, then after being so sick for several months, she regained over 20% of her body weight in a very short time.  She looked healthy, but it really freaked her out.  Last spring, she became anorexic.  Through counseling, she mostly recovered.  But, a different food obsession developed.  She is still underweight, but not as bad as last year.  She obsesses constantly about food and rarely leaves the kitchen.  She avoids carbs.  Her blood glucose is very high--last A1C was 10.0.  Daily bGs fluctuate wildly.  We have changed endocrinologists, and tried different counselors and psychiatrists--most of whom want to lock her in an eating disorder hospital.  She has no support group.  There isn't one where we live--only one for the parents--not the kids.  She is at a diabetes camp this week, and I am praying it gives her some HOPE.  She is depressed, and irritable, and feels that her life is always going to be horrible now because of diabetes.  She went on the Tandem Tslim pump in February, from shots, and management has only gotten worse.  I am desperate to find her care that will address the fear of insulin, fear of carbs, fear of going low.  I know that is the root cause of the eating disorder.  Putting her in a hospital that forces her to eat seems awfully punitive.  I wish we could address the root cause THEN the resulting disorder.  I think diabulimia is certainly a possibility, but I don't believe a conscious one.  If Joslin has teen support groups, I think I would fly up there with her (we are in Virginia).  I am exhausted trying to find help for her, and continually failing.  It is devastating watching her struggle so.  Please help?  Thanks.

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Debbie replied on Thu, Jul 11 2013 4:54 PM

I am sorry for the delay in replying to your post.  It sounds like you have a lot of valid concerns about your daughter's health.  At the current time, we do not have any support groups for teens with diabetes.  We offer fun events for Joslin teenage patients and their families, but we don’t have any teen support groups at the current time.  I would recommend that you continue to address these concerns with your daughter's diabetes health care team and I hope that you can find a mental health counselor that will be able to help your daughter.  There is also a hospital in Virginia that has a diabetes specific program.  I do not know much about this program but you may want to contact them for more information: http://cumberlandhospital.com/chronic-illness/diabetes-and-eating-disorders/  Good luck!


-Debbie Butler, MSW, CDE


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