Research Studies for Children of Diabetics


#1

I have my son Santiago enrolled in The Panda Study at the University of Florida’s Diabetes Center of Excellence. We took him to get his blood drawn this morning (not something he particularly enjoyed). The idea is to study the evolution of non-diabetic children of diabetic parents (since they’re supposed to be at risk of getting D), to identify antiobodies early on, if/when they appear.

The folks over at UF are amazing. Any of you with young non-diabetic kids, contact them. They will be happy to enroll you and you will be contributing to an amazing study that may lead to things that all of us may benefit from one day! :slight_smile:

On a side note, it scares me to death to imagine him with diabetes. You guys that have kids with diabetes are SO ADMIRABLE! I mean, it’s rough as it is on adults. I can only imagine how challenging it must be with kids!!


#2

I thought about putting Isobel and Charlotte in the TrialNet study, but backed out. I did have Isobel tested in the TRIGR study, where they take the cord blood when she’s born, but she didn’t show any of whatever they were looking for (I’m so well-informed, huh?) It was genetic and Isobel didn’t show the gene, apparently. By the time I got pregnant with Charlotte, they weren’t taking half-siblings any more.


#3

I have a six year old with Diabetes. I have to say, it’s a challenge…
There is another study available to the siblings, parents and cousins of Type 1. It is under the TrialNet studies.
We (myself and two of my kids) just had our blood works done last week. You can get more information at:http://www.diabetestrialnet.org/


#4

Panda is part of the whole TrialNet initiative.

We got a letter from them today telling us that Santiago’s most recent screening test was negative, which means that no diabetes-related antibodies were present at this time. This makes me very happy! I am afraid of passing off this stuff to him some day… :S


#5

If we ever have another kid (big debate in this house lol) we’ll test him/her or something like this. It scares the crap out of me to think about two children with diabetes-but my husband said, if we have another child with diabetes, at least we’ll know the warning signs and we won’t be running around like chickens with our heads cut off for a few weeks-I’m sure if any of your children develop diabetes you’ll know what to do-you’re already a pro :wink:


#6

i have heard - not sure how reliable this is - maybe one of you know - that even if they identify the antibodies, there is nothing they can do to stop it - i figured being blind about it is better than a constant worry everytime my kids pee more than once in an hour - or say they are really thirsty.


#7

I have a quick question. My sons are both in football training right now. My youngest, 14, came home last night and kept complaining that his vision was getting blurry and then going right. So my husband and I were asking questions, what did you eat today, did you hit your head during practice, etc. and I decided to take his blood pressure and do a quick finger stick. His blood sugar was 167 and this was about 4 hours after a snack (7 hours after his last meal) and about 20 minutes after about 2 hours of strenuous exercise. Is this unusual or would that kind of activity bring his number up that high? I decided to check my older son’s also just to see and his was 109. Should I schedule him for an A1c or am I over-reacting? Thanks.


#8

I think it’s better to be safer than sorry. I notice with Tony right after he exercises his bs rises real quick for a bit.


#9

There is a really interesting article in the last Joslin Diabetes magazine about how they are finding a genetic form of diabetes in children diagnosed with type 1 very young–toddlers and before. If you have a child diagnosed very early, it would be worth getting a hold of this article and contacting the people doing that research in the U.S., as this is a form of diabetes that turns out can be controlled with sulfonylurea drugs rather than Insulin.

I believe the original research was done in the UK by Dr. Hattersley who is pretty much the world expert on Genetic forms of diabetes.


#10

My understanding is that they haven’t found this form in any kids diagnosed after 6 months of age.


#11

My daughter has type 1, her cousin has type 1 and her uncle has type 1, so at diabetes camp every year we get my son tested through TrialNet. My husband and I were tested the first year and now they don’t test us any more, we’re too old too.

And actually we do it not only because we feel like we are helping out with the research, but also because it seems as if the research is showing that they are having pretty good luck at stopping the progression of the disease if they can diagnose it early on. They can save the functioning islet cells from being completely destroyed. http://www.jdrf.org/index.cfm?page_id=106480
I think that the first “cure” will be that they will stop the progression of the disease. This won’t help our kids or adults that have already been diagnosed and have gone through the honeymoon phase with no more working islet cells, but hopefully at that point no more kids (or adults) will have to deal with this disease progressing to the point of needing insulin to stay alive. And if my non-d child ends up showing the precursors for diabetes at least he will be in the research pipeline and hopefully at the front of the line for this new treatment.

But in talking to a lot of other parents at camp many of them do not want to know if their non-d children have a predisposition for the disease. It would be scary to get that envelope from TrialNet and have it show that he may get Diabetes. But honestly, that chance is there already. And while I may hoover and fret every time he gets a runny nose thinking this is it, the virus that’s going to push his immune system over the edge, I still think it’s important to further the research. We’ve got to stop this disease somehow, and understanding how the body works, or breaks down, is a step in that direction. I don’t want my non-d “baby” poked and have to have blood drawn any more than the next guy, but my daughter with D has to deal with the poking and blood draws and it’s not fair either. I hate this disease and I’m going to do what I can to help stop it, and yes my poor son is too young to have a say in it so I made the choice for him and maybe that’s selfish and crappy of me, but I feel strongly about it. And although he doesn’t like getting his blood drawn, he does it without too much fuss and I like to think that he knows that it’s important.

I’ll get off my soap box now. :wink: