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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.
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