Today, I'm taking a detour from my usual diabetes chat to share something a bit more sensitive. If you're a parent like me, with type 1 diabetes, you've probably wrestled with the question: Should I get my kids screened for diabetes? I started wondering about the risk of my kids getting type 1 diabetes before I even got pregnant.
Now they are 12 and 10.
I've had letters and messages over the years inviting me to enrol them into screening programmes, first in Australia and now living in the UK. For years, I was on the fence about getting my kids screened for type 1 diabetes. A part of me was scared. I was worried about the potential for positive results and the ensuing anxiety. I didn't want to burden them with the possibility of this rubbishy condition.
I also wasn't sure it would add anything to our lives - after all, what's the point of knowing that they are high risk if we can't really do anything about it? And what do they think about all this?
Fast forward to earlier this year and the question came up again. I saw on Twitter some information about the ELSA study in the UK and did a bit more digging.
It's a test for kids age 3-13 to assess their risk of developing type 1 diabetes. The initial screening is all done by post. The information is well set out on their website. I discussed it with my husband (who was open to it) - knowing our kids' risk could potentially empower us to try treatments that can delay the onset and manage the situation proactively, rather than being caught off guard was enough to convince us.
Then I spoke to the kids about it - it's their bodies and I wanted them to be onboard too. They weren't that worried about it, they just wanted to know about how much blood they had to give and would it hurt.
So, we did it. I ordered the kits from the ELSA study. I got the kids to fill in the cards with their blood. It was quite a lot of blood but only took a few minutes. They both thought it might be tricky for a three year old to fill up but it wasn't a big deal. No tears. I posted the samples.
A few weeks later I got a text for each child then a letter. Low risk. Not no risk, but low risk.
Obviously I feel relieved, but even if the results had shown an increased risk, we would have been armed with the knowledge to handle it head-on and had an action plan.
There's no right and wrong here - I totally get that for some people the idea of screening and dealing with being told the kids are high risk for something that might never happen is too stressful and not worth it, but for us it has been a good experience.
I just wanted to share this to make people aware that screening options are out there, something CAN be done if your loved one flags as high risk, and that the decision is totally up to each individual family.
Thanks for reading 😊.
I have a 5-year-old and have been vacillating on this since she was born. I have the kit from the US TrialNet initiative and still haven't done much with it, mostly with the logic that the extra info cannot be used in any direct way. But recently I read about the teplizumab approval (https://www.ajmc.com/view/teplizumab-approved-by-fda-to-delay-type-1-diabetes), which means now there is something to do potentially. So maybe we'll get child screened soon...