Sam’s TrialNet

I took baby Sam to his first TrialNet appointment today. If you haven’t heard of TrialNet, it’s a program that aims to prevent Type 1 diabetes and preserve insulin production before and after T1D diagnosis. They conduct clinical trials related to this goal and they screen individuals with relatives who have T1D for autoantibodies. The testing is free and does not go through your insurance at all. Screening can start at age 1, and can be done yearly for siblings up until age 18. (Side note: I was screened, too, last year. I had no antibodies.)

TrialNet has screening locations set up all around the country. We’re lucky in that our local Children’s Hospital houses a TrialNet location. If you don’t have a location nearby, you can order an at-home kit, or a lab kit that you take to Quest Diagnostics.

So what does a TrialNet appointment entail? A simple blood sample. For Sam, it specifically was 2 cc (2 mL) of blood. This sounds simple, but with a small child, the process of giving blood is likely a new experience, and a potentially painful one.

Here are some things that really helped our experience:

  • I made sure to arrive at the appointment a bit early to have time to confirm any personal information or sign any hospital forms.
  • Once in the exam room, I got out a few of Sam’s favorite toys and got down on his level to play. This helped get him comfortable with the room.
  • I rubbed a bit of EMLA cream on each elbow pit to help numb the area.

The study coordinator came in to go over and sign forms. She then had a child life specialist paged. A child life specialist is someone who helps families emotionally in medical settings. For Sam, this means providing age-appropriate distraction. The two nurses then started popping in. Sam was a bit wary of them at first, but warmed up to their presence. Once the child life specialist arrived, we took several minutes to just interact with her while the nurses finished getting set-up.

One thing they did was use this really cool light that let them look for veins in his elbow pits and his hands. This helped them pick a location that would likely work well for the blood draw. We then sat in a big chair together with Sam on my lap and board over top, so sort of like a high-chair. On one side were the nurses, on the other was the child life specialist. We worked together to distract Sam as the nurse worked. They sprayed a teeny-tiny amount of numbing spray, which I doubt did much, so I was glad I had put EMLA on earlier. They quickly had the needle in and his blood draw was over within a minute or two. Sam really only had one moment where he tried to grab at what the nurses were doing, but other than that he was great! No crying at all!

And what will they do with that blood? They will test it for specific autoantibodies associated with T1D. When testing is done they will send a letter, or give us a call, depending on what they find. Results take four to six weeks.

So now we wait.