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Screening for Type 1 Diabetes

By Karrie Hawbaker

Public Relations Manager

Posted:  9/18/2012 6:56 PM

Tags:

You may remember today’s guest blogger Amanda Griswold from earlier this year, when she and her husband Brett shared with us their unusual love story. Today we’re lucky to have her back to talk about the couple’s decision to have their son screened for autoantibodies predictive of the development of Type 1 Diabetes through the research program TrialNet.

Since I’ve worked at Medtronic, diabetes has been a big part of my life. Not only have I had two roommates with diabetes, but four years ago, I met and fell in love with my now husband who was diagnosed with type 1 when he was nine years old. I can honestly say though, that diabetes was never quite as top of mind as when I got pregnant. Being the spouse of someone with diabetes, I immediately wondered if our soon to be child might also one day be subject to the autoimmune disease. When interviewing pediatricians one of my major questions was their experience with diabetes. So of course when my co-worker asked if I was going to put my son, Nathan, in TrialNet – an international network of researchers who are exploring ways to prevent, delay and reverse the progression of type 1 diabetes – I was eager to have the conversation.

If you’re unaware of TrialNet, it allows immediate blood family members to be screened for autoantibodies that are predictive of the development of type 1 diabetes. Having my son tested seemed like a logical choice since the chance of a child getting diabetes is higher when it’s the father who has type 1. But to be honest I had doubt. The biggest drawback for me, was putting my 12 month old child through the pain of having his blood drawn. Getting shots at the pediatrician was hard enough on me! I sat and wondered what kind of mom it made me to have him tested.

• Was I doing it for him or for myself?
• Would I do this each year?
• If he gets tested yearly, would he ever resent me or his Dad for making him go through the process?
• Was it fair to him to put him through this?

On top of questioning the pain and hassle the research might cause him, I also wondered what would really change if his antibodies came back positive. He has two parents who are pretty deeply involved with diabetes. His dad lives a very full life with type 1 and I know Nathan could too if he was ever diagnosed. So would knowing benefit any of us? Luckily for me, I have someone close to the research who I could reach out to for some advice – our Chief Medical Office, Dr. Francine Kaufman.

I went into my meeting with Dr. Kaufman more hesitant than I thought I would be. I had started talking myself out of putting Nathan in the trial. But, while Dr. Kaufman and I spoke she made one comment that completely changed my mind. By having my son tested we were helping the diabetes community with research. Hopefully, this research will eventually lead to a cure or even to a reason why people get diabetes, and one day maybe it could be prevented.

Shortly after Nathan turned one-year-old, we decided to take him to Children’s Hospital of Los Angeles. While driving down I could not stop thinking about my poor little guy’s reaction to a blood draw. Before being a parent I would not have thought it was a big deal, but now, being a mom, I realize that no parent wants to cause any additional pain for their child. Once we arrived, we filled out some paperwork and then a nurse came in to draw his blood. He of course cried the whole time and in my mind it took absolutely forever. Once we were done he continued to cry so he was given a bear to help calm him down. While the teddy bear worked, the second he noticed the band-aid on his arm, he began to cry again. Knowing my son, I advised that we needed to take the band-aid off and he’d stop crying. Of course it worked, and we were all done! Nathan was completely fine.

It took a few weeks but I did get Nathan’s results back – negative.
(Note: If the results had been positive, Nathan likely would have enrolled in the study which is aimed at preservation of islet cell function from early treatment. And, even though the results were negative, we can have him screened annually for the presence of the antibodies.)

It was definitely a sigh of relief to us. In addition to contributing to diabetes research by participating in the study, I’m also much less paranoid about Nathan having diabetes. Prior to the test I had asked my husband to test him at least a few times. Since we received the results back, I haven’t asked once. I’m not quite as concerned if he’s peeing a ton, drinking more water than normal or acting cranky. 

In the end, I know that he could still develop diabetes even with the antibodies being negative, but for now I am a little less concerned. Can I guarantee that we’ll be back in March when Nathan turns 2? No – I still worry he’ll resent us for making him go through this process (even though it was quick and next time we could even have the kit shipped to our pediatrician’s office). But, I’d like to think that I’ll raise a son who will endure a little pain to help with research about a disease that affects his Dad (as well as millions of people around the world) each and every day.
 

Comments

Joan Stephens

Posted on Tue Sep 18 19:57:00 GMT 2012

I had the same dilemma when my son was about 11. I had his blood sent to Joslin in Boston for an antibody test. I questioned myself why I was doing it. I decided that if he was positive we could do something right away, It was negative and he has not been tested since, He is now 40 years old and diabetes has not shown yet.

Kerry tilghman

Posted on Tue Sep 18 21:08:34 GMT 2012

We too got involved with trial net after my oldest son was diagnosed with type 1. We too looked at it as a way to aid the research for diabetics. To our surprise our second son is positive for the antibodies, and our other two were negative. We never considered the what ifs of a positive result. This caused a ton of anxiety and while we could go forward to the next step, my son was too upset. Also, it is a blind study so while I would do anything ro delay or prevent diabetes for him, we were not guaranteed to get the oral insulin. The anxiety was taking over and after long discussions with our family dr. we decided to back out.

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