There’s a lot of guilt involved in parenting, and I tend to find myself feeling guilty even over small things, like telling my sons a white lie in order to do something beneficial for them. Last night, for example, as I kissed six-year-old Guy goodnight, he said, “Come check me every five minutes all night.” I didn’t know what he was afraid of at that moment, but I knew that he needed to sleep, and the best thing I could do was to reassure him that I’d check him all night long, and let him drift off into sleep feeling secure. And so I said I would check him every five minutes (Guy did say that if I was feeding Baby Adam, then I was allowed to be late).
As you can probably guess, I didn’t check Guy every five minutes all night long, though I may as well have checked him since I thought of him all night while I fed Adam (the baby who likes to do his sleeping in the morning). What I was thinking about last night wasn’t about checking Guy every five minutes to make sure he wasn’t falling out of bed, but about checking him (and his brothers) for diabetes.
A few days ago Mike and I had the privilege of having tea with the world-renowned pediatric endocrinologist, Dr. Francine Kaufman. One of the first things Dr. Kaufman asked us was, have you tested your kids? No, we have not. According to TrialNet, “relatives of people with type 1 diabetes have a 10 to 15 times greater risk for developing the disease than people with no family history.” I don’t know if there are statistics on having two parents with type 1, but my guess is it’s safe to assume our kids are in a fairly high risk group. And let me be fully upfront with you here: I have thought about this issue many times, but since thinking about my sons getting diabetes sickens me, I tend to not get very far with the thoughts. I’ve read about various studies being done, I’ve emailed some questions to researchers, and that’s about it.
Now here is where the aforementioned guilt jumps in: Dr. Kaufman said our sons should be should be screened for the autoantibodies associated with type 1 diabetes. (Autoantibodies are proteins made by the immune system. Their presence is a sign that the immune system may be attacking the insulin- producing beta cells in the pancreas. But, here’s the catch: testing negative for autoantibodies doesn’t mean you will never get diabetes, though it does mean that your chances for developing type 1 diabetes are lower than if you had autoantibodies. And testing positive doesn’t mean that you will get type 1 diabetes. It just means that you have a greater chance of developing diabetes than if you tested negative). So nothing 100% conclusive comes out of the screening. A world expert, however, confirmed something I already knew- I should test my sons. I could list reasons why it was okay not to, but ultimately it would be nothing but fear getting the better of me, as it often does. So…
If my sons were to test negative for antibodies, it wouldn’t mean they would never get diabetes. And if they were to test positive for autoantibodies, I would then have to weigh the benefits and risks of entering them in trial studies – i.e. guinea pigging them- since there isn’t any proven way to prevent type 1 diabetes in man. And by not entering them in a study, I might be keeping them from something beneficial. I also do believe that in order to find a cure, people have to participate in studies, so in that sense I feel an obligation to do it.
There is one point that strongly sways me in the direction of testing them, and it comes from this study published in Diabetes Care. The study, which screened relatives of patients with type 1 diabetes for islet cell autoantibodies, concludes that he majority of subjects diagnosed with type 1 diabetes through the DPT-1 [Diabetes Prevention Trial-Type 1] “were asymptomatic at onset and had normal fasting glucose and A1C levels. This suggests that intermittent screening (IA followed by OGTT) may allow diagnosis of diabetes before severe metabolic decompensation.” In other words, diabetes could be identified and controlled before it had a chance to make my child sick.
I’m definitely not going to check my sons for diabetes every five minutes, but finding the courage to screen them now, and perhaps with yearly follow-ups, seems like the right thing to do. Unfortunately, the idea of taking them for a blood test makes me feel guilty, as does the fact that I might terrify them by making them think they could get diabetes. And then there’s the guilt involved with passing on lousy genes….
If you’d like information about screening for yourself or a family member, visit the TrialNet website.