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[IP] Prevention Studies - long



I have 3 sons - Chris, 15 (not diabetic), Eric, 13 (dx 20 months), Sean, 10 (dx 24 months). By the way, none of my kids have had the cocksackie virus (that I'm aware of anyway) and I don't think I've had it.  I figure my kids' diabetes probably started in the womb.  

We've been monitoring Chris for 12 years now through several studies.  Here's our experiences:

Age 3 (University of Florida) - islet cell antibodies negative.

Age 7 (University of Denver) - islet cell antibodies positive - other antibodies negative.  Followed up with an intravenous glucose tolerance test (IGTT) which was normal.

Age 8 (Denver) - islet cell antibodies positive - other antibodies negative.  Followed up with an intravenous glucose tolerance test (IGTT) which was normal.

Age 9 (Denver) - islet cell antibodies negative - insulin autoantibodies positive.  Followed up with an intravenous glucose tolerance test (IGTT) which was normal.

Ages 10-15 (Florida - Denver joined their study) - everything negative.  No IGTT performed.  We now have a blood test every other year to check for antibodies and won't do anything else unless the antibodies come back in which case he'll have another IGTT to see if there's a problem. Maybe they'll learn more about the disease by studying people like Chris to see how his immune system righted itself as well as studying people whose immune system fails.

I know some parents who have not had their kids tested.  They felt that if they were in the process of developing diabetes, joined the study and were given a placebo rather than the treatment, and the treatment later was found to be effective and their child wound up with diabetes, that they would be angry.  I feel a little differently.  I've already got 2 kids who have to deal with this and, if possible, I want to spare my other son.  I want to know if diabetes may be developing because he could then join the prevention study.  Yes, he may get a placebo rather than the treatment but how else can we learn what works?  I feel that this is not a perfect scenario, but it's the only game in town at this point and I'd take whatever chance I could to avoid another child developing diabetes.

Parents, if you have a child tested and antibodies are positive, that may not be a permanent condition.  When I had one diabetic child, I was told a sibling's chance of developing it was about 6%.  After the second child was diagnosed, a sibling's chance went up to 15%.  When Chris had antibodies, his chances went up again - but only to 25% which is lower than I would have expected. So, only 1 in 4 people with antibodies (and normal insulin production) will develop diabetes.  His chances are now back to the 15% that they were before.

To test or not is an individual decision - you have to do what you feel is best for yourself and your family.  Hopefully none of us will have to diagnose another child.

Pat

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