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

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?

 

Comments (8)

  1. Michelle S. at

    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 is great.  

    So I decided to get my kids tested because I realized that I had been worrying about it a lot more lately anyway.  I do worry when they are thirsty, or diapers are really wet all the time.  I didn’t think, for me personally, that testing them would cause a lot more stress.  I also know there are certain things I would be more strict about if I knew risk was elevated (gluten and dairy consumption etc). 

    Anyway, the good news is that the three kids we could draw blood on (my youngest of the 4 was VERY hard to test!) were negative.  I was so happy.  But it was hard to test the 2 year olds, I think it is best to wait until age 4 or so… or as you said, to not test at all if you think it is harder on you or your family.  I have a twin sister who has not been tested and I can understand why.   

  2. Leanne at

    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 did diagnose, 2 1/2 years later.  BUT – I’m so grateful for the care (through TrialNet) we received in those 2 1/2 years.  My son was given oral glucose tolerance tests every six months, and we very carefully followed his “progress” through that time period.  When onset happened, we were pretty much ready, and I will say that it was useful to have gotten through the majority of the grieving process well in advance. There’s simply too much to do when onset actually happens.  The best thing of all was that we were on high alert in the six weeks leading up to his official diagnosis (through his OGTT results we could see onset creeping up – it was fascinating, actually) and as soon as the symptoms appeared (one day, he started going to the bathroom every fifteen minutes) we pulled out a glucometer, got a super high reading, and had him on an insulin pump next day.  No coma, no IVs of god knows what to try to stabilize, no hospitalization, no long recovery at all.  It was worth it.  After all, if it’s going to happen, it’s going to happen.  You either need to grieve now or later – I decided to be as prepared as I could be, even though the initial news was pretty devastating.  But, that’s life!  My other twin has been tested annually (the twins are now 8) and has never shown any propensity to T1D at all.  Still, I keep testing him, because now I just feel like we’re contributing to science.  And, I suppose, one day his results could change – and if that happens, I want to know in ADVANCE.

  3. Jennifer Jacobs
    Jen at

    Michelle and Leanne – thanks for your thoughts! It’s interesting to hear how you came to test your kids. And you both felt good about doing it. I guess it’s something to rethink once Maya gets bigger. For now, as a new mom, I’m nervous about enough. :)

  4. Michelle S. at

    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.  

  5. Shelly at

    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 my 4 and 6 yr olds tested. I was so excited that they both came back negative! Then I learned that the results are only good for year. What?? So I had a year of relief and now we are due for another test. I plan on doing it again. It is a personal decision Jen. No matter what you decide, you are doing what is best for you and your family. All my best to you. 

  6. Craig B at

    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 be lying if I said I was not on pins and needles waiting for the results each time. Yet, positive antibodies happen less than 5% of the time, so the possibility is still small. 

    But if they are positive, I feel comfort to know that monitoring them may allow me to keep my children out of the hospital if they were to begin showing signs that T1D was coming.  And, the choice to participate in an opportunity to possibly preserve their insulin production through studies like Oral Insulin (an insulin pill that does not affect blood sugar but may prevent or delay the onset of T1D).  

    If I have options that may stop diabetes, why would I not consider it? What if it works? What if it doesn’t work but gets them through college without T1D? What if it makes their T1D easier to control in the long run? In the future, if they find a way to cure you and me, maybe a pill like this can keep it from coming back. Or…. it may do nothing…..which still tells researchers something. 

    Participating in research like TrialNet is much bigger than me, you, our emotions, or the potential 15 seconds of discomfort when the blood is drawn. It is an an example of how we can play a role in finding a cure. It takes 20,000 people to be screened in TrialNet to find 50 participants for the Oral Insulin Study.  It’s no wonder it is taking so long to find a cure.Though the fear of my children getting T1D will probably never really go away, I am not accomplishing anything by watching and waiting on the sidelines. I know that my family’s participation is for the greater good. We feel empowered by getting involved in research, to determine risk, and to find a way to stop T1D, maybe before it starts. My girls participate because they want a cure for diabetes and they feel they are helping to find a cure for their daddy’s T1D.  Are they scared that they may get it? Sure. But they also know the bigger picture. In the end, the decision is still up to you and what you are comfortable with.
    Full disclosure, I work for a Diabetes Center that conducts TrialNet screenings and T1D prevention research. My experience above is both personal and something that I deal with every day with 100s of parents and others affected by T1D.  I wish you the best of luck!
     

     

  7. Catherine at

    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 prevention; it was after I was diagnosed) and had a fantastic experience — 10 years out and I was still producing a tiny bit of my own insulin. It’s a very exciting trial and gives people who do opt for the (free) screening and find out their kids/relatives are at high risk to actually DO something about that risk. Here’s more information: 
    https://www.diabetestrialnet.org/ACD3/ 

    Best,
    Catherine 

  8. Jennifer Jacobs
    Jen at

    Actual prevention! Sounds fascinating, Catherine. Thanks for sharing. I am lookin’ you up! 

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