From New Fairfield, Connecticut, USA:
My 13 year old daughter has recently been put on an insulin pump, with remarkably good results, but since she started, she has been refusing to do blood tests and to read anything that has any connection to food management. Her A1c was 8.5%, which the doctor says is good, but I'm concerned about her refusal to take care of herself. Is this unusual? Is there any solution other than hoping a certain amount of maturity will eventually kick in?
I can't tell from your letter, but the implication is that despite this non-adherence to diabetes management and glucose checks, your daughter's hemoglobin A1c is lower. This happens way too often, in my view as I have seen patients (and their families) get "intoxicated" by the freedom that the insulin pump provides. Despite my preaching over and over to families that "the pump is not an artificial pancreas that will automatically give more insulin when the sugar is high and won't automatically give less insulin when the sugar is low", some patients get really lax about their diabetes management. I am not trying to preach now, but, as you've realized, the pump is often more work, not less.
While you wait for maturity to kick in (when does it ever happen -- even in non-diabetic kids?), there are some things that you can do. I'd strongly consider the input from a mental health professional or psychosocial worker who has worked with children with diabetes. Warning and threatening your daughter of dire consequences won't work, and threatening to take the pump away may be helpful, but antagonistic. Why not "take over" your daughter's diabetes (at least a little bit) like you did when she was first diagnosed? You check her glucose. You write down the values in her logbook. You review the basal rates and count carbs with her (when you can).
Forge an understanding ahead of time with her that the diabetes is not just her illness, but your family's. Be certain that your skills are good with carb-counting, etc. However, don't be afraid to cut her a little slack if the HbA1c is indeed better. Sometimes the ends justify the means.
Original posting 13 Oct 2001
Posted to Behavior
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