Siblings in prevention trials

[Jeff]

What are your thoughts about enrolling siblings in prevention trials?

[Ellen]

What's your opinion Jeff?

I posted my response at this thread but will show it again here because I feel strongly about it.

http://forums.childrenwithdiabetes.com/showthread.php?t=46

As for sibling testing, it's a very personal decision but one that should come with lots of information and thought before consenting to participate. I believe as parents of children with diabetes, we are accutely aware of the symptoms and would recognize presentation early. Receiving news that a sibling tests negative is joyous but you must know that result is only good for approximately one year and the test needs to be repeated annually. Ponder these questions:

1. What exactly will you do with the news/information that the now healthy sibling is multiple antibody positive? Will you see that child with a black cloud hanging over his or her head?

2. How many invasive tests are you willing to put your child through? Invasive tests will be requested such as the IVGTT (intravenous glucose tolerance test) where they bolus glucose directly into the vein and force a sharp rise in blood sugar in a person without diabetes, and then they draw off blood every certain number of minutes to determine FPIR (first phase insulin response). Is it fair for a minor to be subjected to such invasive procedures while otherwise completely healthy and not able to make an educated choice of his/her own?

3. Are you willing to offer your child to be in a research study of experimental protocol whose long term effects are unknown (i.e. Kevan Herold's monocolonal antibody studies or Staley Brod's ingested interferon alpha studies)?

4. Will your now healthy child perceive him/herself as sick since the child is being subjected to invasive tests and probably already fears getting diabetes like his/her sibling?

5. What psychological counseling and preparation will you seek for the individuals and the family participating in studies such as these? Generally the studies offer little or none, so you will be on your own to handle the impact of learning your now healthy child is at increased risk of getting diabetes but no known timeframe as to when or if the child will present with diabetes.

I beseech you to think about these questions long and hard before offering your child's blood for these studies.

[Stacey Nagel]

"Will you see that child with a black cloud hanging over his or her head? "

Ellen,
All of your reasons,but especially this one are why I wont have my 2 other non D kids tested . Call it denial or whatever, but I dont want to have to think about it. I feel there is nothing to gain by testing them every year...
Stacey

[ericcolo]

Ellen,

Thank you so much for the foresight.

I have tested positive in a trialnet study for one antibody and will retest to see if it persists next month. I also signed my 8yo son up for a blood draw - my wife and I thought it would help the cause - but now I'm wondering if it's such a good idea. After delivering a stellar sales pitch on the advantages of 'numbing cream', am I now on the path of severely damaging my son's childhood?

We often forget to ask ourselves but then what? when we jump into things and your post now has me putting myself in my son's shoes, asking how this might affect him if the outcome is positive.

I guess I my wife and I will be having an interesting discussion tonight.

Thank you for helping me look into the future...

-Eric

[BrendaK]

I had myself, my 2 1/2 year old son and my husband tested for the antibodies in trialnet. Everyone was negative except for me. I was extremely high for 3 of the 4 antibodies, and I am currently in phase 2 of the study. I really hope that by having us participate in the study, we are doing something to help find the prevention and cure for diabetes. It's facinating that my mom got type 1 at 17 years old, my son got it at 9 months old, and I have such high levels of the antibodies, but I don't have diabetes at all.

I wasn't worried at all about what the results would mean for my little one. If he did turn up to be positive for the antibodies, that definitely did not mean he would get diabetes. And if he did/does, there is absolutely nothing we can do to stop it. I hope that people participate in trialnet not just to get siblings tested for the antibodies, but most importantly to help find the cure!!

I would have to think twice, though about putting a 2 year old through phase 2 of the study. Phase one is a simple blood draw, but phase 2 is a OGTT where you are hooked up to several lines in your arm for a couple of hours. If Henry were postivie, we probably wouldn't have him do phase 2, because it is much more invasive. If he were a little older, we would probably give him the choice to participate in phase 2.

I thought Ellen had GREAT questions to think through -- and it is a very personal decision.

[Barry]

If and when a drug or protocol for prolonging/eliminating onset is discovered, we'll all have our non D children in line.

[EmmasMom]

If and when a drug or protocol for prolonging/eliminating onset is discovered, we'll all have our non D children in line.

ditto.

I only have 1 other child, but his genetic risks are substantial. My father, his father and his sister are all type 1. According to research I've read his risk could be as high as 30%. We sent blood for the Trialnet studies and it was no good when it arrived, (I'm sure it was a result of the 105 degree day we shipped it on). I need to call them for another kit.
I think there is a lot to be gained with this research, and for me, even if we both came back with a high possibility of developing D it wouldn't change much. I already know he's at risk, and I'm just not that concerned about myself.
I don't know how far I would make him go with the study. I would have to weigh the risks and benefits with his results. If this research can give him any possible tools for prevention I'm all for giving it a shot.

[ramrummy]

My husband was dxd with T1 6 yrs ago, and my youngest last year at age 6. There isn't any T1 anywhere in our families, only a T2 who got it when she turned 70 (a gran of my husband's). I have 2 other boys, 11 and 13 (both in the 'at risk' age) and I have to admit I watch them closely. But I dont see anything positive in having them tested, or me for that matter, because there isn't anything they can do, yet. I we were approached for research I would have to think hard about the implications of wjat results we would find out - I would have to explain to the boys what the tests would be about and I dont want to put the burden of having the results hanging over their heads - for me its a wait and see, I'm more happy with only me worrying about their futures at the moment.

[Momof4gr8kids]

We chose to do the trial net study. We not only have alot of T1 D in our family, but alot of auto immunes as well. We gave all 3 of our boys the choice of testing. We had one son test positive, and he has already had some problems with his B/G a few times, but always has stablized on his own. He was the most interested in doing this study. We will retest him in stage 2 in Dec, his site failed part of the way through.The info that they did collect put him in a 25-50 % chance of T1 D. I think this scares him, but I also think that he is ready to face it head on. We have given him the opption of opting out, but he really wants to follow it through. He made the sweetest statement, he told me that if he could help prevent other children from having to go through D, that would make him happy.

[MrsBadshoe]

I think my older 2 kids and myself will do the inital test...Dh is too old...LOL

[Emmasmommy]

I agree with you all however I did enrole my son for a study - When he was born they took cord blood and sent it off it see if he is "high risk" it was a 1/20 chance that he would turn out to be high risk becuase his sister has D. Since my soon did turn out to be "high risk" he is in a study where i dont know what formula he is on and they check his markers every 3 months for the first year to see if anything has change after that they will follow him once a year for 10 years they are trying to see if children who have no cows protien for the first 6 months of life if it will pervent them from getting D. I felt that this was a great study in the sence that its not the invacive however I will not have my other 3 children tested or put them in any other studies.....Im doing what I can from reasurch and at the same time not putting my kids through alot. The one great thing about the study that my son is in is that he will have a yearly A1C test so hopefully we can catch it before he gets really sick like his older sister (shes 2)

just my thoughts

[Mama2H]

Do you really think it would be a "cloud" over thier head? I personally am always watching and nervous about the signs of D now that I have one child with D so the "cloud" is alread there to me. IMO if it were positive I would know that I do need to watch for it and if it were negative I could stress about it a lot less. Of coarse dh does not want to test. He would rather not know either way.