Siblings of Type 1 Children + TrialNet

 

When I was pregnant with my second child, a lot of people had no qualms in asking me, “What are the chances this baby will have type 1 diabetes too?” Ooof. Don’t feel bad if you were one of them, but it’s just a bit of a punch in the gut for an expecting mom. And before I was pregnant with our second, many people asked me if we were going to have another child or not because our first had type 1 diabetes. Fair question, I guess, and of course it came up between my husband and I when discussing our family plan. I don’t mind answering, but I was always surprised by these very personal probes when they came from people I wasn’t super close to.

Anyway, here’s some info on what we’re all wondering…

What are the odds?

I’ve been told by our endocrinologist  that the odds are about 1 in 10 that our second child will also develop type 1 diabetes. Is there anything we can do to prevent it? No. If it’s going to happen, it’s going to happen. It’s just a matter of when. We already know that he’s genetically predisposed to it, he has a sister with type 1, an uncle with type 1, and a great grandmother with type 1. There’s some good information about the genetics of type 1 diabetes here. 

Is there a way to test early for type 1 diabetes?

Yes and no. There is a study called TrialNet that we can choose to participate in once Griffin turns one. TrialNet screening looks for five diabetes-related autoantibodies in the blood that signal an increased risk of T1D. This screening test can detect these autoantibodies up to 10 years before diagnosis.

When Lily was diagnosed, Jeff and I both participated in the study and had zero of these autoantibodies, however, that doesn’t mean that we can’t develop them. SO, that’s part of the rub about the study for me when deciding whether or not to have Griffin get screened.

Will we get our non-T1D child screened? 

We haven’t decided yet. In my mind, here’s how it will look if we choose to get him screened at 12 months:

Scenario 1: He has 0-1 autoantibodes – yay, right? Yes and no. He could develop them at any time, so it’s not saying he won’t ever get T1D. He would go back to screen every year after this.

Scenario 2: He has two or more of the autoantibodies – this means his immune system has already begun attacking the insulin-producing beta cells. But now we know it’s just a waiting game… T1D is coming, but when?

I already know all the symptoms of T1D and to be honest, I’ve already checked Griffin’s blood sugar 4 times in his 7 months of life. Yes, I’m paranoid and probably always will be hyper-vigilant about this, so I will most likely catch it early if it does come and we can avoid DKA this time around. Will getting him screened just cause me more anxiety? Maybe. I know that’s the thought process for a lot of parents in situations similar to ours.

However, in the name of our type 1 community, science, developing preventive measures, and maybe even a cure, I feel like we should participate. I just don’t want it to cause even more stress in my mama mind. If you’re in the same boat, let me know, what have you decided? 

 

 

3 thoughts on “Siblings of Type 1 Children + TrialNet

  1. Hi Stephanie!

    Thank you thank you thank you for writing this! I am in the same boat as you. My oldest, Chesney, was diagnosed 1.5 years ago when she turned 2 and just after I found out I was pregnant with baby #2. I got so many of the same questions you did…Now with our 7 month old I think we are leaning towards trial net. Not for certain but I think so. Would you mind if I shared your blog on my page? I would love for some people to read this and get some perspective from a fellow Type 1 mom?
    Thank you again so much,
    Carlynn Martin

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    • Hi Carlynn! Thanks for reading and for reaching out. My baby is 7 months old too – crazy. I think we are leaning towards TrialNet too, but still not sure. Please feel free to share any of my blog posts! I want to educate as many people about T1D as possible. 🙂

      Like

  2. Ho Stephanie, thanks for sharing information here about siblings with T1D. I have a 3 year old with T1D and we are expecting our second child this September, good to know about trial net, we will consider it too.

    Like

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