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February 21, 2003

Honeymoon, Research: Cure

Question from Dallas, Texas, USA:

My four year old daughter was diagnosed with type�1 diabetes a few weeks ago, and the endocrinology department we are working with has provided very little information about the honeymoon period or any possible means of prolonging or restoring beta cell functions. Nothing was mentioned about antibody tests or any remaining insulin cells. Also, when I asked about having her two sisters (ages three and six) tested, I was told they could not be tested unless we were chosen to participate in a clinical trial. We are supposed to meet with the team again in a few weeks, and I was wanting advice on what are the most pertinent questions/critical issues I should pursue with them.

Answer:

There is not much known about prolonging the honeymoon period except for tight glucose control in some research studies. So they have provided you with correct information. There is also not any reason to test antibody levels unless part of research study since they do not provide any help at all in treatment questions for your child.

Similarly, testing antibodies for siblings or parents is useful if involved with a controlled scientific study but not much help for the individual. It can be done but usually insurance companies do not pay for such research. If you wanted to pay the cost of antibody testing for any first degree relatives, some diabetologists suggest islet cell antibodies, insulin and GAD 65 antibodies be tested.

Nobody knows how often such tests should be done, when they should be repeated or really what their predictive value is outside of a large study. However, if they are highly positive or more than one are positive, the risks for future diabetes development are high. If they are negative, this does not guarantee that they will stay negative forever. It would be reasonable for you to have such discussions with your diabetes team and follow their advice from a common-sense perspective since there is no known prevention or intervention at the moment that is safe. Lots of research labs working around the world on such problems but we’re not there yet.

SB