Thanks Fred. I had considered the “baby life insurance” issue. Although I didn’t think in terms of funeral expenses per se . . but more so being able to get in on a plan young, that allows for increases in coverage without medical exams. It is also a consideration for T1’s taking a job . . some employers offer life insurance plans without medical exams, and some of them are “portable”, you could continue the plan / payment after you leave the company without a medical exam.
Seems like “cool” math ! ? !
don’t know if it’s cool or not… it’s a much higher number than if just one of us had diabetes, but it’s still an 83% chance of them not developing it.
I think the fact that it’s no where in either of our families sort of took the edge off when we (briefly) considered whether or not the genetics of diabetes would play into our decision to have kids.
I’ve had my share of panic moments, too, and during those that 17% looms pretty large.
Wow, yeah. I meant the calculation of the math itself . . NOT the fact that there is a 17% chance . .
My husband struggled with the concept of not having children due to the DM . . we had some interesting “discussions” as you can imagine .
My father is a T1, diagnosed after I was born. He said if he knew I would be Diabetic, he would not have had me. When he found out I was pregnant he was upset and said I shouldn’t have kids! I am so glad I had my daughter. It is part of life, you never know what your kids might or might not get. My co-workers 5 yr old son came down with diabetes and none of them have it.
Whoa ! That’s “heavy” . . . that sort of information must be a strain in the relationship? That was exactly the nature of the discussions with my husband . . My point was that since my Mom’s brother and father had T1, if my parents had not chosen to have children . . … My point to my husband was of course that he wouldn’t have me to fall in love with! This was not his firm feelings on the matter, he was certainly just considering all of the issues.
I’ve had T1 for 24 years now and no family history of diabetes. When I was pregnant with my son 10 1/2 years ago, I went as far as a genetic counselor to find out if I might be the one to start the family history of T1. She told me that genetics really don’t play as active a roll as people think. I now have a 10 year old and an 8 year old diabetes free…so far. I too worry when they drink excessively and pee a lot. It’s probably a typical diabetics paranoia.
That’s good news ! I’m sure that its a fair amount of “typical paranoia” . .I see it being somewhat of an extra concern when there is stong family history no matter what the statistics tell you. There is another member on here (whom I have know since she was young . .) she has T1, she just lost her brother to T1, and both of her young children have T1 . . . My heart goes out to her. . . .
I am sorry to come into this discussion six months late, but i need some help. I just had my 7 year old daughter tested for diabetes. I am at T1 diabetic. She was showing fatigue, thirst, and already has auto-immune disease (grave’s). I tested her with my device and fasting is 90. we did blood work- she showed positive for GAD65 ( which I am not really sure what it is- but it is related to the dagnosis of diabetes). Her other antibodies were normal. Yesterday we went in for more bloodwork and a glucose tolerance test. the docotor called last night and gave me information about trialnet. what are the benefits for MY daughter with this study? I know the results are for the greater good and possibly could be benefical to her. i am curious to know for those of you who have invesigated it, what are the pros and cons for it. we currently get blood work done once a quarter to manage the thyroid medicine. Will this oral insulin prolong her diagnosis of diabetes? What good is the information about her antibodies? what do you do with that? Is it a wait and see game? Please help! thanks!
Hi, Dlinda, I’m happy to share my experience. I joined TrialNet as a research coordinator because having my son in the previous prevention trial was so valuable in terms of early diagnosis and peace of mind, and because I saw how much had been learned just in the time he was in the study. I don’t have type 1, but have grown up with it (my older brother was diagnosed in 1955!).
First, TrialNet is an international network sponsored by NIH, JDRF and ADA and has attracted the best type 1 researchers. They come together to select the most promising protocols and are able to reach lots of families, fill studies fairly quickly, and then, of course, get answers quickly. There are TrialNet sites throughout North American, but you can also request a test kit to take to a local lab. You could have the sample taken at your daughter’s quarterly appointment (just one poke!) The test is free and results are available in about 4-6 weeks.
Family members at risk can be followed closely, and the majority of those who develop diabetes are diagnosed prior to any clinical symptoms. Some family members may be eligible for a prevention trial. Right now TrialNet is looking to confirm the delay in onset that was suggested by the DPT-1 results testing oral insulin. Other prevention studies are planned for the future.
Benefits to your daughter would include close observation and, if she were to develop diabetes, probably an early diagnosis. Early treatment might preserve insulin secretion (longer honeymoon.) If she is enrolled in a prevention trial it’s possible the onset of her diabetes could be delayed. You’re right, some participants will be on placebo, but the early diagnosis and treatment would still be of benefit. For me, another benefit was peace of mind. I knew my son was at risk, but I knew that if he was developing diabetes we would learn about it at a study visit. It may sound odd, but for me that meant I didn’t have to worry between visits. Plus, I had access to leading diabetes researchers and research coordinators. When he was diagnosed the family had some time to prepare before he started taking insulin, he stayed totally healthy and his honeymoon did last longer than most. I also knew that I had done everything possible to prevent or delay his diabetes. Both my son and I are proud that we did make an important contribution to understanding type 1. Plus, this was a very low-risk therapy. There are no known risks to taking oral insulin. As a protein, it’s digested and has no effect on blood glucose levels. The theory is that the gut will recognize insulin as harmless and the immune system will be retrained to stop its attack on the pancreas.
Also, it may help to know that results are confidential, and don’t go to your insurance company or into your daughter’s medical record. More information can be found on the website, www.diabetestrialnet.org.
Please let me know if you have more questions. I’m very much in favor of having kids screened, for their sakes and to learn more about the disease, but it is a personal choice with no “wrong” answer.
All the best,
Christine
Yes, I am. I don’t think the genetic testing was out when my Kids were young. No, I would not have had them tested. 1. My Daughter wasn’t in “like” with needles or blood tests so it would have been unnecessary torture for her. 2. It would’ve been kind of pointless since it couldn’t tell us “when” they would get Diabetes if they tested positive. 3. I am well-aware of the symptoms of Diabetes so if something caught my attention, I would test their sugars at the appropriate times. That didn’t bother them since it was a small pick and they saw me doing it many times daily. Plus they knew it made me Happy seeing a Good result. 
They are in their 20’s now and thankfully NO D.