Getting your other children tested

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Permalink Reply by Sarah M on March 12, 2009 at 10:58am

We did happen to get both our children checked for the autoantibodies, as well as myself and my husband. The only reason we got it done was for a family study being done in our area. They checked all in the immediate family of the diagnosed child, and then will check the non-d child once every year after to keep an eye if that will ever change. My husband is type 1, he carries 2 of the 3; my son is type 1, he carries all 3; my daughter and self don't carry any.

If you want the test done to put your mind at ease, I'm sure all you have to do is ask. I'm surprised it isn't automatically done when another sibling is diagnosed.

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Permalink Reply by Christina Luis on March 12, 2009 at 11:03am

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.

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Permalink Reply by Natalie on March 12, 2009 at 11:43am

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.

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Permalink Reply by Sarah M on March 12, 2009 at 1:06pm

The only reason we were lucky enough to have the test done was for this study that is being done in our area. I do believe this test should automatically be done for immediate family upon a diabetes Dx though. The strange thing before Noah's Dx, is that he was also a regular heavy pee-er. Always as a baby he drank a lot and peed a lot. He loved milk, a lot.

I hope that even though your doctor doesn't recommend the test you desire, you are able to push for it. The one thing I've learned is that you sometimes have to be a strong advocate for yourself and your family. If one doctor won't do it, I'm sure you can find another who will.

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Permalink Reply by Christina Luis on March 12, 2009 at 12:47pm

The test is called "Trailnet" Sorry it took so long.

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Permalink Reply by Manny Hernandez on March 12, 2009 at 2:59pm

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.

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Permalink Reply by Natalie on March 12, 2009 at 3:07pm

Thank you I will talk about this with their Dr. on Monday and I will let everyone know how things work out.

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Permalink Reply by Tracy Baker on March 12, 2009 at 1:27pm

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...

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Permalink Reply by Natalie on March 12, 2009 at 2:46pm

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?

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Permalink Reply by Tracy Baker on March 12, 2009 at 3:07pm

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.

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Permalink Reply by Wendi on March 27, 2009 at 9:43am

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.

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Permalink Reply by Natalie on March 27, 2009 at 10:01am

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?

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