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April 6, 2006

A1c (Glycohemoglobin, HgbA1c), Behavior

Question from Glen Burnie, Maryland, USA:

My 16 year old daughter has been diabetic since she was 17 months old. Until she was three and a half years old, she was under the constant care of a pediatric endocrinologist. Learning to care for her diabetes was difficult, but her doctor helped out a lot.

Then, until she was seven years old, her mother and I did not do very well caring for our daughter’s diabetes. We did not see an endocrinologist on a regular basis because of we moved six times in that time period, and my daughter’s mother and I divorced. Her A1cs ranged from 9.0 to 13.0 during that time. From the age of seven until the age of 14, my daughter lived with her brother and me. Our home life was much more stable and I was able to control her A1cs and keep them within the 5.5 to 7.5 range. My daughter was not much help in doing this though. She has always had a difficult time keeping up with the daily regimen of blood glucose checks, recording her blood sugars, and taking her insulin injections. Puberty did not help at all either. She knew what her responsibilities were in caring for her diabetes, but she was growing more irritated and apathetic to it all. She has been to a couple diabetes camps and has had several sessions with a nutrition counselor.

She is now 16 years old and has been living with her mother for the last two years in Watertown, New York, 75 miles north of Syracuse. During that time, her A1cs have been very high, in the 9.0 to 13.0 range. Her mother has had a very difficult time helping our daughter care for herself. Our daughter has grown weary of the daily grind of caring for her diabetes and now her health is suffering.

In the past two years, she has been admitted into the hospital for her diabetes. Her legs and feet hurt constantly. One doctor said she has the feet of a 50 year old diabetic. She has ketones very frequently. She has lost a lot of weight. She was about 110 pounds, but now weighs 89 pounds at 4 feet, 11 inches. She is sick a lot and stays home from school more often now.

Her current doctor is trying to get her on an insulin pump. We are hoping this will help. For the last few years, her doctors did not want to put her on the pump because of her inability to check and record her blood sugars, as well as her ability to follow her insulin regimen. What more can be done for my daughter? I feel as if we (our family and her doctors) are not doing enough. Her mother tries very hard to help care for her, but she can’t be with her 24 hours a day. I live in Maryland and try my best to coach and encourage the both of them over the phone. Her health is growing worse and I worry I might lose her.


From: DTeam Staff

I think that your concerns are correct. It sounds like your daughter skips insulin frequently. Perhaps she also has an eating disorder as well. We coined a term for this many years ago called diabulimia. All this is extremely dangerous and she could die from an episodes of ketoacidosis, have a heart attack or a stroke. Since the problem is a psychological one, often associated with depression, low self-esteem, anger, etc, the solution must involve a skilled psychologist. I do not believe that such people do well on insulin pumps since they just have a different way of omitting insulin. The pump does not magically make decisions about food, monitoring, insulin, but only delivers insulin in a different fashion.

The solutions that have worked for us are as follows under such circumstances:

A parent does all the blood glucose testing and logbook keeping, five times a day
A parent measures and actually injects all the insulin all the time
At school, the school nurse actually does the blood glucose testing and actually administers the insulin.

This immediately stops the problem with DKA and omitting insulin but, of course, does not solve the depression and anger nor the eating problems, sneaking food, etc.

In in the long term, unless these problems are addressed and corrected, you are also correct in that her possibility of significant eye, heart, kidney, nerve problems is extremely high. The good news is that improved control and lowered A1c values allow the body to start healing and reduce these short and long term risks.

So, please have mom go back and talk to the diabetes team and get your daughter into counseling.