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December 12, 2001

Community Resources

Question from Montegut, Louisiana, USA:

My daughter has had diabetes for about two and a half years, and even though she is currently seeing an endocrinologist, her blood sugars have averaged 300 mg/dl [16. 7 mmol/L] for almost a year now, and I am tired. He is our third doctor. I cannot find a pediatric endocrinologist who will see her and help me manage her diabetes. I have exhausted my resources. The large children's hospital in the city is not the answer since they used her for research. Does anyone know of any pediatric endocrinologist in our area? I would be willing to drive just about anywhere. I am watching her just get worse, so someone please help us.


I am worried and surprised that you felt the pediatric endocrinologist at the children’s hospital just “used her as research.” I don’t know who you saw or how the research project that they were recruiting her for was presented to you, but I personally know some pediatric endocrinologists in your area who are first rate clinicians! Was there some other problem? Personality conflict? Language issues? Perhaps they made suggestions or found issues in home management that you objected to? You may be limited, unfortunately, by who may be in your insurance network.

Additional comments from Dr. Donough O’Brien:

I sense that you and your daughter would really fare best with a diabetes care team comprised of a nurse educator, a dietitian and a medical social worker as well as the doctor, and which has a 24 hour telephone contact.

You should know too that Institutional Review Boards have to approve all clinical research protocols and that there are the strictest rules against pressuring families to participate in research without fully informed consent.

Additional comments from Dr. Stuart Brink:

Don’t give up. You need to find a diabetes team — doctor, nurse or combination — who can help you problem solve since the values you describe are very elevated — and keeps her current as well as future health at very high risk. Most such youngsters are skipping insulin, falsifying blood glucose data or just not getting the appropriate insulin dose.

The first thing to do is to make sure that this is not the case by doing all blood glucose readings with direct adult supervision — and making sure all food is weighed and measured so that dietary compliance is not a problem. If an adult is directly supervising or giving all insulin injections, then omitted doses stops being a problem. If blood glucose readings are directly supervised and logged, charted, graphed together, then patterns can be established. This usually solves the problem — in my experience, about 95% of the time. There are still some rare individuals who need very unusual insulin regimens. This can be identified in this fashion as well, of course. If you do this style of close monitoring, then you can resolve the questions of noncompliance and nonadherence once and for all — and then either identify a method for solving the problem or move onto other possible explanations.

If you cannot find a local specialist, then you may have to travel to one of the big centers elsewhere in the country. Ours or many others do consultations with similar patients all the time from all around the world with special arrangements by having families stay in a local motel or hotel while our team of specialists analyzes the situation.