TEDDY Diabetic Research Study

Wow. When I originally wrote this out, I was absolutely spent...

When we returned home from a week’s trip to Michigan (which involved car troubles and searching around for a new car while Doug and I were in separate states), I opened a letter in the mail. The letter was from the TEDDY Study (The Environmental Determinants of Diabetes in Young). It stated I should call them regarding Liam’s test results, from labs that were drawn when he was a newborn. When in the hospital, we were asked by a student at the Medical University of Georgia whether or not we wanted our kids tested for their potential in developing Type I Diabetes in the future. It was of no cost to us, they also used existing blood already drawn from Liam and Ava…Why not?

The letter I opened for Liam looked very different from the letter I received when Ava was born. Ava’s letter basically stated she has an “average” probability of developing Diabetes I. Liam’s letter didn’t speak of results, but basically told me to call on his results. Not good, I thought.

So, I called. I learned that Liam has a higher chance of developing Type I Diabetes Mellitus than average. I bawled. Ava has a .05 possibility (average). Liam has a 3% possibility. These #’s seem EXTREMELY low, but are never the news you want to hear about your child.

We were invited and signed-up yesterday to be part of a research study (TEDDY) funded by the National Institute of Health. It follows children from 3 months all the way through their 15th birthday, to determine if the child develops autoantibodies to the cells in the pancreas which create insulin. Repeated and consistent test results with positive autoantibodies (involving more than one autoantibody every three months) could signal the beginning of Type I Diabetes Mellitus (aka T1DM). The study can’t be started on a child if they are older than 4 ½ months old, so the time was right to get involved.

A few things I MUST say:

- Liam DOES NOT have Type I Diabetes. He has a certain pair of genes and a gene sub-type that put him at a higher risk (3%) than the average population of developing this auto-immune disease.
-Type I Diabetes Mellitus is not familial.
- Liam is a big kid. T1DM doesn’t have anything to do with his size.
- T1DM isn’t related to Type II Diabetes, which is “Adult Onset Diabetes”.
- “They” don’t know what causes a child to go from having a genetic predisposition to T1DM, to actually having / developing T1DM.
- Those children (and adults) with T1DM require shots of insulin on a daily basis or they will die. These are the EXACT words the Research Coordinator told me.
- We don’t have to do anything different than we have been doing. (Other than research the heck out of this stuff and be as vigilant and aware as possible). I did start giving him Cod liver oil, as I found that Omega-3 fatty acids are thought to be “protective” and drastically decrease the chances of a genetic predisposition turning into T1DM. Interestingly enough, we gave Ava cod liver oil everyday when she was little, as it is thought to be great for brain development and many other things. So, I was planning on giving Liam cod liver oil anyway, this just made me go out and buy it that much more quickly…If I have to cram it down his throat until he turns 18, so it will be…
-There are no fast answers. We will be part of this study until he is 15 years old, Lord willing. If he develops T1DM, we would no longer be part of the study, understandably.
-Meeting with the study coordinator yesterday (who is in her 50’s, a parent and has T1DM), I felt more at ease, knowing that we don’t need to change anything we’re doing. In fact, some test results in the future may come back with one autoantibody, but we’ve been told that even one autoantibody’s presence doesn’t mean T1DM. More than one, and over multiple tests (one test every three months until he is two, one test every six months after he turns two) could mean that T1DM is a possibility.
-I typed “Type I Diabetes prevention” in Google and found an interesting article published just yesterday. It stated there was going to be a T1DM Convention in Seattle TODAY at a certain hotel. There are researchers at this convention from Sweden and Seattle who are discussing a vaccine for T1DM, which will only prevent T1DM but will not adversely affect / compromise the remainder of a child’s immune system. So, being the crazy person I am, I looked-up the hotel on-line, called the “Event Director” of the hotel and left a message at 9 a.m. ET this morning. SHE CALLED BACK this morning and told me that she passed my message along to the Event Coordinator who was in direct contact with the researchers attending the convention. So, I PRAY for a call back from the researchers in the next few weeks (and will be persistent about it) in hopes that Liam could be deemed eligible for a study of a more aggressive nature. I’m not sure if they’re looking for his genotype or not, but if they are, I will let them know we’re here!!!
-All this to say that there may be ABSOLUTELY NOTHING to worry about, as he could potentially NEVER EVER develop T1DM. They just don’t know what triggers its development. The Research Coordinator told me they wonder if it is a specific chain of events in a child’s life that must occur in a certain order which bring about T1DM.
-Even if he does not develop T1DM, a gene has been passed from myself or Doug to Liam, which he could also potentially pass onto his descendents. The information / data this study is able to obtain could determine why Liam (and the other 7,000 children they are following worldwide) DOESN’T develop T1DM. This information will hopefully be something that will help pinpoint exactly why someone with the gene for it does / doesn’t develop T1DM.
-As I stated, no one knows what exactly triggers T1DM. Things that are being researched are: psychological stress, introduction of cow’s milk, timing of introduction to certain foods, diet, something occurring in-utero in the last month of pregnancy, intestinal viruses, other viruses, hygiene (there is a larger # of those affected by this in Westernized countries), lack of exposure to certain viruses / bacteria. They just don’t know. So, as you can see, one could become crazy trying to control these variables in their child’s life. The list above sums up a child’s first two years anyway, in my opinion… Knowing these things, we will keep doing everything we’re already doing.
-Currently, there is a study in which those with a genetic predisposition to T1DM take pills for a few years. It has been found that this “delays” the onset of T1DM by five or so years. (It is thought that taking the pills allows the body to become used to insulin, which is basically what T1DM is fighting off..- I said that rather crudely, but hopefully you get the point). Doing so will allow a child to become competent enough to take care of themselves with regard to possible insulin injections, if their predisposition eventually turns into T1DM. And my thinking is…why not delay it by a few years, so a cure can be found and the child will never HAVE to develop T1DM?
- I was beside myself every time I talked about this the past few days, until we met with the Research Coordinator. She relayed that, of the 1,300 children they are following in Atlanta, approximately 22 of them will eventually have T1DM in their lifetime. I pray that Liam is not of the 22. Even further, I pray there aren’t ANY that develop T1DM!!! I am now more at ease with the numbers and am thankful we’re part of this study. Now that we know he could potentially develop this disease (even given the low % of probability), I will be doing everything within my power to keep him the healthiest little guy, leading the most normal of baby / toddler lives possible.

Please pray that this is only a wake-up call, that Liam doesn’t ever develop T1DM and that the information the medical staff is able to obtain from Liam will be of great benefit in stopping this disease in its tracks once and for all.

Thankful for every ounce of health & Ava and Liam chuckles,
Shelly, Doug, Ava and Liam

Update: I was told that none of the children that are part of this research study have been diagnosed with T1DM, fortunately. Chances are 93-97% that he WILL NOT develop T1DM. For now, it is in God's hands, and we can't worry about it. I am much more at peace after hearing these #'s a month or so ago (updated 02/13/09).