Thoughts on Screening Siblings?

My oldest was diagnosed 2 years ago this March. He's 9 now. I have a 7 and 4 year old as well. The idea that the younger two might develop diabetes is upsetting to me. I know that TrialNet offers genetic screening for siblings of affected kids, and that they offer the opportunity to take part in prevention trials if the kids test positive for certain antibodies or genetic markers. I struggle with whether to have them tested, and my spouse is against it -- the upset of bloodwork, and possibly repeated bloodwork and exams if they were entered into a clinical trial. I'm curious to hear others' thoughts on this topic.

It's a tough call. I didn't for a long time, but then I changed my mind and did. Trialnet likes to screen every year, even if negative, so that's a lot of blood draws. We've chosen to do it every other year instead. My son has done it 3 times now and been negative every time, which is good to know. But it can change at any time, so it's not like it's any guarantee. (He's 13 now so was about 9 when we first went to trialnet; his younger brother has type 1 and so do I). I also give him vitamin D, omega 3s, and probiotics just in case they may help prevent it, but there's no proof that those would help. I figure it can't hurt. In any case, it's a tough call. My son hates it. He may just stop doing it at some point. I don't know if it's worth it or not. Up to you, and you can always change your mind! I'm not sure I'd do it with a 4 year old since the needles can be traumatizing, although using emla cream before you go in would help make it less painful.

After our first daughter was diagnosed we enrolled our other three in trial net. I was having a ton of anxiety over not knowing. Our oldest daughter came back positive for autoantibodies and was dx'd 2 months later (10 months after her sister). we were able to avoid dka with her. We still have our 2 younger screened every year. the peace of mind that comes with knowing we are clear another year is worth it. The screening is only 1 vial of blood. We know which lab people to ask for for the kids to minimize trauma. I definitely think it is worth it. I have enough to worry about, knowing we are in the clear for the other 2 for one more year eases my mind greatly! FYI, we also do vitamin d and omegas for the 2 non d's

We've decided against it. I just can't bear the thought of having my 5 year old son in for blood draws. I spotted my daughter's T1D before she became very ill, so I feel sure that I would do the same with my son and I am not worried about DKA if he should develop diabetes. We do watch him closely and can check his BG if we are suspicious. Aliceclones needs to know for reassurance to reduce her stress level. For me, ignorance is bliss and I know that the testing would raise my stress level. There isn't a right or wrong thing to do here, just what works best for you.

For the sake of argument, let's put aside the stress of bloodwork and the stress of not knowing as factors for a second. What specific good could the information do (i.e., whether the sibling tests positive or negative for autoantibodies)? What harm could it do? Pros and cons...

one pro: prevent ketoacidosis upon diagnosis; be more prepared for a diagnosis and keep an eye on it. Another pro: may qualify for prevention trials, some we may not even know about yet. Even delaying diagnosis a little bit could help. Con of being antibody-positive; still may never develop type 1 and thereby have unnecessary stress. Other ideas anyone?

I have my 2 year old son tested each year at the JDRF Walk. This past Saturday was the 2nd time and the blood work is no big deal. Didn't bother him at all - no wincing, whimpering, crying - nada, so I would not let that be a factor. Personally, I would rather know so we could enroll him in the trial and possibly delay onset. Every day he does not have diabetes is a blessing. Also, by enrolling children who test positive in the trial, you are helping to advance science and possibly discover what causes diabetes.

I got tested at the JDRF Walk last year as well. They told me that we would get a letter in the mail if negative, a call if positive. As luck would have it, my letter came in the mail on a Saturday, but there was not one for my son, so of course I spent the rest of the weekend worried sick. Our mail doesn't come until the p.m. so I called first thing Monday morning, all the while my stomach was in knots waiting for the right person to get on the phone and look up his results (negative).

We enrolled our 6yr old son when my youngest son was diagnosed, and have continued to have screenings for the past two years. I think it makes my youngest son feel good that his brother is having "pokes" too. Something else to consider: with research, the nurses cannot force a child to participate in a study. The children have an option and they are actually asked - do you want to get your blood drawn . . . . . . I was shocked the first time I heard this. As a parent I want everyone in my family to participate in research. Luckily my older son (now 8) was asked last time and he agreed to participate; I was so proud of him. Unfortunately, my t1d son opted out of his jdrf study. Lots of things to think about. If we found out that my older son had markers, I think we would take his health more seriously and it would be a benefit to know. Best of luck in your decision.

I think that if I knew that there was a really promising prevention intervention for antibody-positive, but non-symptomatic kids, I'd see a real upside. I guess that being antibody-positive would make you eligible for things that come up, which I might otherwise not know about, though.

I'll have to discuss with my spouse. Thanks again for all the input and thoughts.

Myself, husband, and son (3 yr old) were all tested after my dtr was dx'd at 4 1/2 (now 7 1/2). Husband and son both tested positive for autoantibodies and they continue to be tested every 6 months. Xander is 5 yrs old now and he really has no problem with the testing (finger pokes, IV's, etc...) other than drinking the sugary beverage. This last time it took some coaxing to get him to drink it all. My husband showed signs this last visit of "glucose intolerance" and they contacted him today on entering in to a study where he will receive some type of infusion etc.... to try and halt the disease. Xander understands he may some day fully develop type 1 like his sister and we have open discussions about whether he would want shots or a pump like his sister, etc.....and we have the "luxury" of possibly entering in to a clinical trial with him as well. Until then, he knows he's helping to find a possible cure for his sister and everyone else with type 1 diabetes. It has been a positive experience for us.