Hi Everyone, it’s been a long time since I posted but here goes. We had a visit to the endo yesterday and the woman from trialnet came in. My husband was diagnosed at age 4 with T1 and Jake at age 2. They are the only people on either side of the family with T1 or T2 diabetes. The woman offered that our other son Mike and me could be tested to see if we have the anitbodies. We declined it. Knowing either way wouldn’t make a difference in the end result… we’d still have to wait for it to happen with Mike before we could do anything.
I’m just wondering what you all would have or already have done? Are there benefits to this that maybe i’m not aware of?
To me it just all seems like a crap shoot. The way I figure it… my husband’s side of the family supplied the diabetes and my side has a handful of other autoimmune diseases that didn’t exactly help probably.
My husband was dx at the age of 16 months so when my oldest son was dx at the age of 3 we had our other son tested through Trailnet and in about 3 weeks were told that he did show possitive for the antibodies but the time we were about to do the comfomatory test he also started showing the symptoms and he was offically dx less than three months after his brother.
I had him tested for my piece of mind, I know it is not a exact test but it made us a little more aware and was able to catch it early so he didn’t have to go into DKA. Some people say that the test just makes you worry more about whats to come but in my case I was glad we did it.
I myself didn’t have it done on me because I am almost positive what side it came from. I don’t know if this helps any but good luck and God Bless your family in your decisions.
Hi,
I’m glad you posted about this. My son was Dx’d about 16 months ago at the age of 17. I immediately started looking for clinical trials since I am a site director for a research center. I discovered Trialnet’s Natural History of diabetes study and our center is now a TrialNet site. We run blood samples for people all the time. People want to contribute the the NIH’s efforts to build a 200,000 sample database from which researchers hope to glean insight into what makes people get T1 DM. They understand that a simple, anonymous blood draw will move the science of understanding this devastating disease forward. They understand that being quick to the diagnosis can preserve islet producing cells and early interventions may even allow a person to be insulin free in some clinical trials.
I am always amazed that families decline the chance to know if their child has the autoantibodies because they think they wouldn’t do anything differently. Knowing the autoantibodies are in one’s system allows you the option to be extra careful. It gives you plenty of time to participate in the other aspects of the TrialNet studies which look to delay onset… there are many benefits and no downsides.
Everyone lives near a TrialNet site. Go to this website and find your closest center and bring your family.
We had my daughter, my husband and myself tested. With our daughter, I wanted to know if she was at risk. Not that I would do anything other than watch, really. Turns out I test positive for two of the antibodies yet have not developed T1D. They have been following me for 5 or 6 years. As far as I am concerned, if they can learn something from my remaining in the trial, all the better. There is not much I can do to find a cure, so this is my contribution.
Thanks everyone! and let me applaud everyone who actually does go through all of these trials and studies to try to help all of us.
Daneenm… what kind of follow up have they done?
My mother in law kind of turned my husband into a guinea pig when he was a kid and he’s very adamant that we don’t do the same with ours. We have agreed that as long as it doesn’t require any additional blood draws (on top of the ususal ones every 3 months) or other testing we will do it… but this one would have required a blood draw that Mike wouldn’t have normally. I’m open to hearing the benefits but I’ve yet to have someone tell me what they really are.
As far as knowing whether or not he’s at risk… That in and of itself really isn’t enough for me. We caught Jake extremely early because we knew just what to look for. His A1C at diagnosis was 8.3. His goal now is just under 8 (until he can recognize his lows on his own, the dr has us run him a little higher… plus he’s only 3). The doctor’s figured his pancreas had only been malfunctioning for less than a month when we caught it. What else could the test really tell us?
Plus i guess the idea of having to get my other baby stuck with a needle when he doesn’t absolutely have to just breaks my heart. Jake gets enough “pinches” in day.
I think there are alot of benefits. First of all, you son would know to be more aware of any symptoms when he is off on his own . Also there are some research studies you can participate in if you test positive for any of the antibodies. The reseach could help prevent diabetes. Why wait until it’s too late when you can be proactive. Most of the studies offer compensation. My older son did not have any of the antibodies. BTW at my endo, they do the trialnet clinics every month so I’m sure there will be another opportunity if you change your mind.
It is the same as WYOmom described. A blood test every 6 months (very much like the 3 hour glucose many of us had to do when pregnant). Since my daughter did not carry the antibodies at the time, she has not had repeat testing. We need to have her tested again since these can develop over time. Honestly, if she was positive for antibodies, i would have her do the every 6 month monitoring because that would help us to know if anything was changing. Also, there are a number of studies for the newly diagnosed that work to prolong the onset.
My son was dx at 20 months, so I do understand the need to run them higher. Really, even at 10, we are running higher than adults aim for, just because the ‘need’ to stop when feeling low is still not reliable - Do I stop playing with my friends or just ignore it and keep going.
At any rate, as with all things, participation in TrialNet is very personal decision. If it works for your family, do it, if it doesn’t don’t do it. My family chooses to participate for the reasons I mentioned.
I am Type 1 diabetic, my son was diagnosed last year at age 8 and my father (dx at age 1 over 70 years ago and older brother (dx at age 12) are Type 1 as well. We did decide to have our familly give blood for research and my husband tested himself for antibodies. I don’t know if knowing about the antibodies would be beneficial but knowing you are negative would be a relief. Take care, Jodi…Ps…We never got my husband’s test results yet so we will ask at our next hospital visit.
we had the option of testing my younger son when my older son was dx. , we declined knowling just waiting for the shoe to fall would drive us especially my little guy crazy. he mentioned the other day he has been thirsy ( not really) and said he would probably be in a comma if he really had diabetes! yes he is already a little concerned about his health. he is now older than his brother with type 1 at diagnosis and genetically very different so we are hopeful. just my opinion! good luck. we all know there are no preventitive steps to be taken for type 1 and you know the warning signs of impending problems and all so i would spare the needle!
Myself, 2.5yr old son, and husband were tested almost a year ago this month when our 4.5yr old dtr (only person on either side of family to have Type 1 diabetes) was diagnosed. I was negative, my son has one, and my husband has 3(the same ones as my dtr). My son had no problem with having blood drawn. As a matter of fact, they did it twice because he was + for only 1 autoantibody and they wanted to make sure it wasn’t false-positive. Neither time did he cry or throw a fit. That is probably the exception to the rule…but it’s just a poke. There are worse things in life as we all know. They FINALLY went in for the next phase of the test last week. For the glucose tolerance test my son and husband had an IV placed for the frequent blood draws and they used EMLA cream on my son for that. No fussing for the poke. He fussed over removing the tape at the end! Neither my husband or son’s bg readings changed more than 2 points throughout the entire test. I don’t know what they will learn from this information but we are participating in something greater than ourselves and possibly to help further the efforts to find a cure for this and other autoimmune diseases without much effort on our part. My husband said the most annoying thing about it was just finding the time to go do it. We all know nothing is going to stop Type 1 from happening but I figure why not open yourself up to other options like studies with the purpose of extending pancreatic function as long as possible. And why shouldn’t you know what’s “in” your body? If my husband had known that he had these autoantibodies we may have made different decisions when it came to having children. Now, they are here, I love them more than ANYTHING in the world, and I would NEVER not want them but had we known we would have been able to make a more informed decision, and it may have been different from what we have done.
I waffled on this question, and at first did not get my non-D son tested. I didn’t want to know, didn’t want to worry. Then I read more about type 1, and decided to test. He was negative for the antibodies, thankfully. He’s gotten the test twice now, to see if he becomes positive. But it’s not an easy decision. I’m trying to do things that might be preventative in any case, like giving vitamin D, probiotics, omega 3s. They may not work, but at least it’s something I can do.
For more info on the possible causes of diabetes I’ve made a website, www.diabetesandenvironment.org.
I wanted to give you the link to a new TrialNet screening website that we just launched last week. I hope it will answer all your questions and make your decision easier!
