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August 3, 2001

Behavior

Question from Wayne, New Jersey, USA:

My 13 year daughter, who has had type 1 diabetes for a little over a year and been on an insulin pump for eight months, had really good control for the first several months on the pump (hemoglobin A1c was 7%). She is very intelligent and has no trouble calculating proper bolus amounts, measuring the quantity of food and using nutrition information to calculate carbohydrate grams, but her last A1c was 8.1% and her control has not been good. My daughter sometimes forgets to bolus for food, has been snacking, and gaining is weight. If her blood sugar goes above 200 mg/dl [11.1 mmol/L], she often becomes antagonistic and weepy, and then it is frequently difficult to get her to test her blood sugar or even to allow me to test it for her. This often happens if she doesn't want to go somewhere with the family. For example, yesterday her older sister wanted to go shopping for a friend's birthday present, and my daughter did not want to go. I tried saying we would wait one-hour before going so she could finish watching her television program, but that she had to come with us. The discussion deteriorated, and she began crying and saying I didn't trust her to stay alone. In a way this is true because I don't want her to be alone in the house for several hours more out of concern that she might go low and no one would be there to help her. (Since she has been on the pump, my daughter has not felt low unless her blood sugar is below 60 mg/dl [3.3 mmol/L], and several times with exercise she got to 45 mg/dl [2.5 mmol/L]before she noticed.) She would not test her blood and she hid her hands under her arms and refused to let me test her blood. She is as strong as I am, and I couldn't pull her hands out. Finally, I slapped her, and she let me get to her finger to test. Her blood sugar was 290 mg/dl [16.1 mmol/L]. I gave her a bolus, and two hours later, she was fine and pleasant to be around. Of course, we didn't go shopping. This is not the first time such an incident happened. I think that she conveniently forgets to bolus for food so the family will have to stay home to deal with her health. She likes staying home and is happiest reading a book or otherwise amusing herself. I think she is depressed which is much more pronounced if her blood sugar is high. I took her to a psychologist once, but she has refused to go again. I don't know what to do. I try to remind her to bolus whenever I see her eating. I am hesitant to try to restrict her eating because I don't want her to develop an eating disorder. I feel that she has found an effective way to control the family, but she is harming herself to do it. Her endocrinologist says that she recently entered the second stage of puberty. Is this a common problem? What should we do?

Answer:

By her behavior (as opposed to her words), your daughter is letting you know that she is not capable of making safe choices about her diabetes care right now, and that the burden of the daily demands of her diabetes are too much for her to manage on her own. As you already know, insulin pumps are nothing more than one of many ways to administer insulin. For some, the pump offers flexibility in their schedule and reduced frequency of low blood sugars, which make living with diabetes much easier. For others, (in particular those that had hoped it magically take away the need to think about diabetes, or those that tend to forget to bolus), the pump is not the best form of insulin administration. It is possible that the pump is not the right choice for your daughter at the present time.

Right now, your daughter is struggling, and this struggle is affecting the whole family. It is vital that your family (not just your daughter), begin working with a mental health professional who is familiar with families who have a member with diabetes. Ask your diabetes team for a referral. If they can not help, ask your local American Diabetes Association affiliate for some names of people in your community.

Your daughter Is only 13. She does not get to choose whether or not she goes to therapy with the family. Please seek the help your family and your daughter needs as soon as possible.

JWB