Have any of you gotten your other children tested just because? I have had growing suspicions lately about our 9 month old. And I have been checking her BG on occasion here at home. Most of the time she is in a normal range but somtimes I get a number that is a little higher. No where near as high as my 2 year old was, but still it makes me wonder if the process is starting in her. I was wondering if getting her tested for the autoantibodies would just help put my mind at ease (or prepare us for another child with diabetes). She doens’t mind me checking her so I will probably do a few more checks before her 9 month checkup on Monday and talk about it with her Peds doc. I really hope it is just me being neurotic. But I was just curious if anyone else had their other children checked just to be sure the antibodies were or weren’t there at the time.
I have debated this myself. We found out in Nov. that my oldest was type 1. Since thing I am scared to death that my 3 yo might have it. I was told about a quick blood test that they can run to see if they are predisposed to the disease. I have tested my 3 yo first thing in the morning and got a semi normal number. She does show some symptoms, tons of urination and frequently thirsty. However she has always been this way. Its not something that is new. She has never shown any signs of DKA so I try not worry. I know its hard. I guess the only thing that you can do is what you are. Why are you worried about your 9 mo? Is he/she been showing signs? I know another MOm Tracy Baker has had her other child tested and he did end up developing type 1. So it might not be a bad idea. All it can do though is say that they are predisposed, not necessarily that they will get it. I will find the name of the test for you.
Thank you so much. She seems to be more irritable and it seems like her urine output is more than it has been. She is not necessarily drinking more. I don’t know…she is just reminding me of how my son was before he was really showing obvious signs. I have asked the docs about getting other siblings tested when Rory was diagnosed and they said it isn’t recommended to do that. And when I have asked again at other times they say the same thing. I would think they would want to, to better see how it starts and how it progresses. But I think I will definitely ask to have it done. I wonder why more places don’t test like they did for your family, Sarah? It will just really help put my mind at ease, otherwise I am always going to read into her behavior and worry that it is diabetes. Thank you for your replies. I will post how it all turns out.
The test is called “Trailnet” Sorry it took so long.
Hi there I have had both of my boys tested with just the test the peds ran in the lab( because their dad is also Type 1) at there well visits and they never showed anything but I would strongly suggest that you ask about the TrailNet. Mikey was dx and when he was still inpatient we had Owen tested and I came back positive and they wanted us to do a conformitory test and about 1 week before those results came back Owen started wetting 4 to 5 diapers at night so I knew we didnt need the test results. If they come back positive on the TrailNet they might not ever develope it or they could but it makes you a little more aware. If you have any questions feel free to contact me…
Thank you so much. I will definitely ask about that and push to have it done. Should I have them test my oldest daughter also? She has never shown any signs but, maybe just to know for sure, like you said to be more aware. That way I know if she too might be predisposed to it and be more mindful of her behavior as well. What is it like managing 2 little ones?
We have Santiago enrolled in TrialNet since he was 1.5 years old. Every year he gets screened for GAD antibodies and C-Peptide level. We were first working with them through UF in Gainesville, FL. Then, Stanford and now Oakland Children’s. They have lots of hospitals that work with them and it’s highly advisable to get your other children tested.
Thank you I will talk about this with their Dr. on Monday and I will let everyone know how things work out.
I would have all the siblings tested. It would be to your benefit and also for the research on a genetic link. It has been a real experience with both of the boys and daddy having it but at least they will have to eat the same and have each other to turn to as they get older.
I just had my son tested. he shows no signs (9 yrs old) my daughter was diagnosed feb 5 (she’s almost 11)
We just had my son tested for the antibodies. Our center does it, they take a vial of blood. we will find out in 6 weeks. If he has the antibodies then he can go on this clinical trial that has been shown to “stave off” the diabetes for maybe 4 years. I though that was worthwhile.
I think it looks like the same test Sarah M did. It could put your mind at ease and maybe even help if you are near one of these clinical trials, they told me no downside, it’s an oral medication.
I have called and spoke with a representative from TrialNet. There currently isn’t a clinic near us , but they can send us the kit to have the blood work drawn at our local Dr.s lab. In order to participate everyone has to be at least 1 year old so I decided to wait until this summer when Ava turns 1 and then get everyone tested at the same time. By then she said there may even be a clinic up and running near by. Our Pediatrician didn’t think it was necessary but she supported my decision to do it. My husband hasn’t been so sure of the idea either, he thinks it will make me worry even more if one of them is positive. But I think it is worthwhile and the other kids if not just research in general. One point he was concerned about was how a positive result might affect someone getting insurance coverage later on? Does anyone know anything about this?
From what I understand (I used to work for a major insurance company) They cannot discriminate against you for this reason.
Thanks for the information! After reading this thread, I have submitted the screening information and will call tomorrow to enroll. My son (3) was recently diagnosed, and although, I knew my other son was at a higher risk of developing T1 because of this, I did not know they could screen him periodically. This website rocks! Knowledge is Power! Thanks!
i know this post is old, but i though i would throw my hat in the ring. We have 4 kids, and our 2nd daughter was diagnosed last year. This past summer i started having concerns about my oldest daughter, and i had a doctor tell me that if i am going to be stressing over it, than i should go ahead and figure out which kids to be worried about! My oldest daughter came back positive with a 50/50 over the next 5 years. Because of the test we were able to get additional screening done, and she was officially diagnosed in october. we were only able to catch it so early because of the results we got from trialnet. "Ignorance is bliss", but since we are all parents of a T1 we can't be ignorant any longer, so now "knowledge is power"
I can't imagine what it must be like with 2 children with diabetes. I mean, I know in a way it must not seem like anything new, but still very stressful in my eyes. I give you a lot of credit. Some days I can barely keep it together with my son.
To be honest, we haven't had the testing done yet. The Dr.s always talk me out of it, (Rory's endo.) My husband has still been hesitant with the idea. I never know what to do anymore. My oldest has never shown any signs, my youngest (the one I was having concerns about) doesn't seem to be showing signs now either. I have still tested her from time to time, whenever she is particularly cranky, thankfully always within range. We have just learned she has a very intense personality! But she is so tuned into everything her big brother deals with that she even asks me to check her too and she doesn't fight me when I do.
I know this idea for testing them is always in the back of my mind. I know I will continue to worry one way or the other. I guess I am just hoping and wishing for the day that if a test does come back positive, it can be prevented completely from that point on.
I periodically get concerned about my older son because he is still in pull ups at night -- can't hold his urine overnight and floods the bed, and that always freaks me out. But then, of course, I'll take his BG in the morning and it comes back at 80 and I feel stupid. Still... I think maybe a trip down to Joslin this summer would be a good idea.
My 10 year old Daughter is Diabetic but my 7 year old son is not. I have thought about checking his BG at times but I don't think he will let me. I think he would be too afraid and I don't want to push him. So far he has not shown any other signs of being diabetic. Are there signs/symptoms that might indicate that he could become diabetic?
We checked my oldests blood glucose the first time when she had the same summer cold as her sister. It was the first time that my then only diabetic daughter had keatones with a virus, so we checked to see what it was doing to my oldest. She had eaten less than 5 minutes before, but we got a 210 reading, her numbers came right down, but after that we started the screening process. Even with that the DRs said it was probably nothing and that she most likely wasn't D, but they started doing every test there is to make sure. Turns out we were right to be concerned. Before she was able to get the clinical diagnosis she just wasn't feeling very well. There was no weight loss, but she didn't gain either. Her coloring was off, and she was pretty moody. Both of my girls are very competitive swimmers, and my oldest was very frustrated because she wasn't making any of her swimming goals. We didn't see any of the typical symptoms until right before clinical diagnosis happened, and even then it was very subtle (thirst, bathroom trips). She is starting hormone swings, so all the symptoms were easily explained away if we wanted, but all together we knew it was D. My oldest said she felt so much stronger, and like her old self once she finally got her first dose of insulin. I was so proud of her, when her sister was diagnosed she couldn't watch her do shots or checks, but by the time she was diagnosed she took over shots and checks within 2 days of leaving the hospital. We don't give our kids enough credit, they are amazingly resilient!