UPDATE: I Have to Know - Got the Kids Screened

12/8/10: Just received word that both kids tested negative for the insulin antibodies! This is such good news and I am so happy, it makes me realize how different results would have really darkened my holiday spirit and possibly led to years of anxiety and guilt. I'm going to celebrate. The kids may not quite understand why, but they will!

I took my 8-yo daughter and 5-yo son in to a local research hospital for a blood draw as part of the TrialNet study. I have received information on this test for years, and because I have diabetes the researchers are interested in screening my kids for diabetes-related autoantibodies. If so, there is the possiblity of continued participation in research studies that might help prevent diabetes in others or delay the onset in my kids.Researchers told me that although both were screened out of a study at birth when they tested negative for a genetic marker for diabetes, there was still the chance.

I knew my kids would not be interested in a blood draw from the arm, based on how they have responded to vaccinations at the doctor's office. And although I watch both kids carefully for the symptoms, I didn't want to know. The presence of autoantibodies could come years before diabetes is diagnosed, so why would I want to get a bad result and have that hanging over our family for what could be years?

I don't know why I changed my mind, but my wife and I talked about it and decided we have to know. I took a day off from work and scheduled an appointment at the research clinic. Then I made plans to do fun things with the kids for the rest of the day, including tickets to see the Harry Potter exhibition in town. I didn't tell them about the test or the blood draw until the night before, and both were very upset. I had to explain from a very basic level why we don't want them to have diabetes and why they are at risk. But I assured them that the numbing cream the clinic sent out would make it easy. And if they were brave, we would go to Hogwarts.

They did very well. My daughter volunteered to go first, but wanted to sit on my lap when they drew blood. Apparently the numbing cream worked wonders, because she said, "That was it?!" when it was over. My boy was not going to be outdone by his big sister, and said he was ready but didn't need to sit on anyone's lap or hold anyone's hand. His draw went well and was painless.

I was so busy signing the study consent forms and worrying about how the kids would act that I forgot to worry about the test results. I asked a study nurse when and how we would get the results, and she told me that I would find out in about 6 weeks. Six weeks? I know this is a different set of tests but we can get A1C results in 5 minutes nowadays. So sometime in late December I should get results of the tests, and information on continued studies. I remarked that negative test results would be a great Christmas gift this year. (Later, when asked by her grandmother what she wanted for Christmas, my daughter replied that she didn't want to get diabetes.)

So I have weeks of waiting ahead of me, but I'll try not to think about it. And I hope the kids don't, either. The Harry Potter exhibit was an immediate distraction!

Best wishes on the outcome and hope that the wait is not too terribly painful. We all hope that each of our children are spared.

Thanks for the information. I have wondered if I should take my two girls (7 and 5) to get tested and what the procedure was. I have to admit that I don’t want to know…but I do. I would like to be prepared…but I don’t. Does that make sense? I hope you get good news and it will hopefully get my butt in gear to make a decision for our girls. Good luck, and your children are adorable.