September 23, 1999
Behavior
Question from Albany, New York, USA:
My ten and a half year old daughter has had Type 1 Diabetes for almost 4 years. She is now on the pump (5 months). She seems to be becoming more nervous and overly responsible in all areas of her life (especially in terms of testing, bolusing, etc.). It has made her a sort of ” clock watcher ” and it sometimes affects her sleep (getting to sleep — is it getting really late? — waking up early — is it too early to be awake?)
She is a perfectionist and a excellent student. I don’t know if this is her nature or if the diabetes has made her such a “little adult “. She seems to be crying a little more than usual, and truly seems to be worrying that something will go wrong and perhaps she’ll end up in the hospital or the pump will break, etc. She was never in the hospital for her diabetes yet, not even on diagnosis. She has never spent a night away from us yet since she was diagnosed. We do not have any willing family who feel they could safely take her and her attempts to sleep at a friends house have failed due to her wanting to come home (these tries were before the pump). She is going to a three day diabetes camp soon (two nights). She will know some kids there from her support group. She is the only diabetic child in a small school that I work at 3 or 4 days a week due to there being no school nurse. She tends to play only with her sisters and is on the quiet side, although she is active in Girl Scouts, piano, Drama Club and basketball as well as her support group and JDF.
How can I help her not be so nervous and worried about so much, especially with her levels etc.? I appreciate her being so responsible and I know she unfortunately has to, but there must be a way to help her relax a little and not be so up-tight.
Answer:
Your daughter, although a perfectionist, was happier and less vigilant before she went on the pump. If her blood sugar control was acceptable on a multiple shot regimen, then it may be time to return to such a regimen.
The pump is not for everyone, and in particular, it can place an enormous burden on children when they are not cognitively or emotionally ready to handle the increased demands a pump makes. It may be that your daughter feels overwhelmed by the responsibilities of the pump, but does not want to disappoint you by saying that its more than she can handle. She may need to hear from you that it is not a failure or a disappointment if she chooses to return to multiple daily injections. She may also have taken on more responsibility for her diabetes care than she can handle right now. Offer to take over all responsibility for her daily regimen for a while — perhaps a week or two — to give her a “vacation” from thinking about the diabetes. She may feel much better knowing that she can give the responsibilities associated with diabetes to her parents for a while. Then begin to talk with her about which aspects of her diabetes care she would like to be responsible for, and which aspects she would like you to remain responsible for. This lets her know that diabetes is a family disease, not just hers.
Finally, it may be very helpful for you to find a psychologist or other mental health professional who works with children and families who have diabetes or other chronic illnesses. Your diabetes team should be able to help you find one. Working with such a person may help your daughter feel less anxious about living with a chronic illness.
JWB
