Type 1 diabetes: your child's risk
In general, if you are a man with type 1 diabetes, the odds of your child getting diabetes are 1 in 17. If you are a woman with type 1 diabetes and your child was born before you were 25, your child's risk is 1 in 25; if your child was born after you turned 25, your child's risk is 1 in 100.
Your child's risk is doubled if you developed diabetes before age 11. If both you and your partner have type 1 diabetes, the risk is between 1 in 10 and 1 in 4.
Lately I have worried quite a bit that my daughter will get T1. I don't know why I'm so worried. Yes, it's an awful disease and it's very difficult to grow up with it, but it's not like it's a terminal illness. We have great options available these days that makes treatment so much easier than it was years ago, and we know more. Back when I was a child, we didn't even know what carbs were. We just thought that, if you had T1, you had to follow a low-sugar diet. We followed the ADA exchange diet for years. We also thought that an A1c under 9 was just fine. We didn't know that it should really be more like 7 or below. Now, we have pumps, CGMs, and know about carb-counting and A1c's, so we're much better off. So why am I so worried all the time?
Some days the worry overwhelms me. This past Tuesday, for example, I went to my weekly new moms group, which is a Bible study and a playdate (combined!) that my church offers. I love the other moms in my group-- they are great resources and we've really formed a supportive, cohesive group. None of them, however, know about my T1, because I'm very private about it. Anyway, I noticed my daughter was eating a few cereal pieces from her "snack trap" when she set it aside and made a beeline for another child's sippy cup, which was partially buried under some diapers in the child's diaper bag. My daughter grabbed it and obviously wanted water. I picked her up and gave her own sippy cup to her, and she CHUGGED the water. Then she pushed the cup away, took a breath, and then grabbed it and chugged some more. I panicked. My heart pounded and I started sweating, and the room felt like it was closing in around me. I just knew. I knew without a doubt that she must have T1. It was the worst feeling. I left the group before anyone else, took her to the car, put her in her car seat, and got out my meter, while I was wiping away tears. I took her shoe and sock off of her left foot and lanced her heel. She cried, but not for too long. I think she just didn't like me holding and squeezing her heel to get a drop of blood. My heart pounded the whole time. Then the number appeared: her bg was 107. Perfect, since she'd just eaten some carbs. I was so relieved. I couldn't believe I had let myself get so worked up over this. She was just a little thirsty, probably because she'd been eating and playing. What an emotional roller coaster.
I decided that I can't take this wait-and-see-for-the-rest-of-your-life stuff. I need to know if she has the genetic makeup that puts her at an increased risk for T1. So I emailed a coordinator for the TrialNet Study, and am waiting on a package from them, which will include a blood test kit. I plan to get a lab to draw blood from my daughter and then have the kit sent to TrialNet and wait for the answer. I need to know. If she's at risk, then at least I can prepare myself and start researching the drugs available that might prolong the honeymoon period. If she does not have the genes, then I can let myself relax a little.
If anyone has input on the TrialNet study, I would love to hear about your experience with it. I hope it can provide me with the answers I'm seeking.