From Florida, USA:
My 10 year old son has had diabetes since the age of 15 months. My now 8 year old daughter just tested positive to the Islet Cell Antibodies. Because she was tested via DPT, I do not have any values for the test, simply that it came back positive. I am free to exit from the trials at any point in time. She tested negative previously, and I was told that she has a 40% chance that this is now a false positive. I'm not counting on it.
On Monday of this week we had them rerun the ICA as well as test for the Insulin Antibody, GADA, HLA, and an HbA1C. Unfortunately her veins would not cooperate at the time in order to draw off the blood fast enough for the IVGTT. Results will not be back for 4 weeks and again I will not be privy to the values, only whether they are positive or negative.
I have begun exploring the following theories on reversing this attack on her islet cells; including Nicotinamide, and possibly the theory regarding use of Vitamin E as well. In the United States they are testing subcutaneous injections of Ultralente two times per day and they are testing oral insulin. I have also found research regarding high levels of insulin in camels' milk and its potential use for treating diabetes (although Type 2). As well as what the HLA will reveal as to whether or not she possesses a marker for the protective gene. My daughter is in otherwise excellent health and weighs 65 pounds.
The results of her tests will not be back for 4 weeks and I want to be proactive and safe with proceeding with treatment. Any advice or assistance you can offer will be greatly appreciated.
What course of treatment would you pursue if my daughter was your child?
The purpose of a study is to find out if the treatment is useful. We won't know about the results of the treatments until the study has concluded.
As a mother of a kid with diabetes, I empathize with the writer. If it was my kid, I would continue with the DPT trial, knowing the commitment and reputation of the investigators.
Additional comments from Dr. Quick:As the writer indicates, there has been a lot of theories in recent years about what causes diabetes, and lots of different approaches have been tried, to prevent diabetes from showing up when antibodies are present in a high-risk individual. Some of these theories are sheer speculation, and others are in the middle of rigorous testing.
The writer seems to want to try to guess which theory is most likely to prevent diabetes in her daughter, and then enroll her in a study of that theory. That's something that's really counter to the concept of running a study: the results of a well-designed study cannot be predicted. And if the study has several different sub-sets of treatment possibilities, and the participant is randomized to one of these different "treatment arms", then it's impossible for any one participant to be assured of getting "the best" treatment, as the random assignment is set up to prohibit any one individual from "gaming" the study.
Finally, I would strongly discourage anyone from attempting to reproduce the features of a study without participating in the study itself. (For example, it's easy to give a non-diabetic person a shot of a small amount of Ultralente, as one branch of the DPT study will be doing). We just don't know if it's helpful or harmful. That's the point of the study: to find out!
Original posting 25 Aug 1998
Posted to Research: Causes and Prevention
Last Updated: Tuesday April 06, 2010 15:08:58
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