Screening for Type 1 Diabetes: What’s a Mom To Do?

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Trial Net BrochureI recently visited my endocrinologist for a routine checkup. I was in the waiting area reading, texting, and, well, waiting. A woman who works at the office – she helps coordinate research – sat down next to me and introduced herself. She asked if I’d heard about diabetes screening. She handed me a brochure that read, “Can Type 1 Diabetes Be Prevented?”

I thought, Apparently not. I’m in a diabetes center.

Under the title was a picture of an idyllic-looking family. Mom, Dad, Son, and Daughter. Smiling like they didn’t have a care in the world. It wasn’t clear to me who had diabetes, who knew they were genetically-at-risk for diabetes, and who didn’t have diabetes in their cards at all. It didn’t matter. They were content. The only thing missing from the picture was a genetically-at-risk golden retriever.

The woman went on to ask me if I had any siblings.

I told her Yes.

She asked if they’d be interested in screening for type 1 diabetes.

I told her that I doubted it. One’s over 30 and the other is close. And we come from a long line of worriers. 

Then she asked if I had any children.

I nodded my head. I knew where she was headed.

She said that my daughter could get screened for type 1 diabetes when she turns three.  She asked what I thought about that.

What I thought was this:  screening Maya would be a great thing to do if I wanted to stop sleeping at night.

But I didn’t want to be rude. I thanked the woman for the information and told her I’d consider it.

My emotional decision was No, thank you. But when I got home, I thought about it on a rational level. And I understand why people screen their loved ones.

First:  it helps advance science.

Second:  there’s no concrete way to prevent type 1 diabetes now, but maybe there will be a way in the future. If you’re in a database of at-risk patients, you’d be the first to find out.

Last: in the very best case, the person tests out of diabetes. No genetic risk. Everyone jumps for joy.

But.

Of course remains the dreaded possibility; the one where the test says that your most precious cargo might get diabetes.   

I suppose if you’ve got a good head on your shoulders, you could just put the information in your pocket and carry on.

But if you’re anything like me, the knowledge that your child MIGHT get type 1 diabetes would be terribly debilitating.  

Once you have the information, then what?

Do you wait around for diabetes to strike?

Does every “Mommy, I want another drink of water?” give you heart palpitations?

If prevention – not just talk of prevention – but actual prevention was a reality, my perspective would be different. But right now, it just seems like an easy way to cause unnecessary stress.

I took a psychology class in college and I remember learning about self-fulfilling prophecies. If I think that something is likely to happen, it will happen. Maybe it’s silly, but I believe in that sort of thing.  

Right now, I have no reason to believe that Maya is likely to get diabetes. So why give myself a reason?

In the meantime, I respect everyone’s decision to test or not test their children. And I’d love to hear from you. If you could find out the odds, would you?

 

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8 Comments on "Screening for Type 1 Diabetes: What’s a Mom To Do?"

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Catherine
Jen,  Thanks for the post! For what it’s worth, you might want to look into the PREVENTION TrialNet trial being run by my old endo (a Type 1 himself and fantastic researcher, Kevan Herold from Yale). They’re screening close relatives of people with Type 1 and seeing if they can prevent onset in those who are at high risk by treating them preemptively with a drug called teplizumab. I can tell you a LOT more about this if you want (or just google it and my name) but I was in one of the original phase 2 trials (not for… Read more »
Craig B
Your post matches what I and many others with T1D go through.  I have had T1D for 31 years, my younger brother for 27. To say the least, there is something going on in my family related to diabetes risk. I have two daughters (11 and 13) that I hope will not be diagnosed, but that fear will probably never go away. Chances are, you already fear Maya might have some level of risk of developing T1D, regardless of the research study being offered to you. My girls have been in TrialNet for 4 years, and so far, no antibodies. I would… Read more »
Shelly
Hi Jen, I think every parent with T1D goes through the same emotional roller coaster. I felt the exact same way that you did. Why would I want to know this??? I likened it to knowing when and where and how you would die (morbid thought, I know). I would rather go through day by day happily ignorant. But then I realized what you realized: that prevention is something possibly on the horizon. And also, the earlier treatments the better if diagnosed. I wanted to be in that database. And finally, I realized that knowledge is power. So, I got… Read more »
Michelle S.

It is an emotional experience no matter what Jen…. i certainly think it is best for the beyond babyhood stage.  I admit that I surprised myself by bursting into tears of relief when I was emailed the results.  Leanne, I am sorry to hear one of your twins has it, but its an interesting point you make about preparing yourself so you were able to cope well when the diagnosis came.  

Leanne
I did get my two younger kids tested.  Although my husband and I are not diabetic, we were eligible because my oldest child diagnosed with T1D at age 27 months.  And, onset nearly killed him.  For me, I realized that I never wanted to be “unaware” that my child could get diabetes, ever again.  I had my younger twins tested as soon as they were old enough – just after their second birthday.  I got the news that you DIDN’T want to get.  One of my twins was at the highest risk for developing T1D within five years.  And he… Read more »
Michelle S.
hi Jen!  I did decide to test my kids this summer.  I pretty much had the same thoughts as you until this past winter when a dietician with diabetes told me about getting her three kids tested. Her youngest was positive, but she explained that it just meant she had certain auto antibodies that raised her risk.  Not having them is not a guarantee you won’t get Type 1, and having them does not mean you definitely will develop it.  over the years, when they have repeated the testing, her daughter’s levels of auto anti bodies have gone down, which… Read more »
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