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Nervous Mom here!

Discussion in 'Parents of Children with Monogenic Diabetes' started by EmilysMom07, Jun 1, 2012.

  1. EmilysMom07

    EmilysMom07 New Member

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    Hello everyone! After 4 years of being diagnosed with Type 1 Diabetes, my daughter had her antibody tests done for Neonatal Diabetes. The results came in the mail today. I don't quite understand the results, and I am waiting (trying to be patient) for the doctor to return my call about the results. Both antibody tests (the IA-2 and Gad-65 antibodies) were both negative, which from what I have read, means negative for Type 1 Diabetes! I've never really done any research or been told much about Neonatal Diabetes because my daughter was diagnosed at 11 months old, and I was just told it was rare by that age. I just need some answers and some advice from some parents that have been here. What can I expect with these results?
     
  2. Cookie Monster

    Cookie Monster Approved members

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    The absence of GAD65 and IA-2 antibodies together with the young age at diagnosis do make a monogenic form of diabetes a possibility. The next step would be to take some blood and send DNA for genetic testing. I think in the US the main centre is the University of Chicago but there may be other institutions that do it. This is not a quick process so sadly you may have to wait a while.

    This link from a lab in the UK explains a bit about the process. There are a number of different monogenic forms all with different symptoms, causes and treatment options. You can read up on them through links on that site too.

    Some of the terminology can be a little confusing but there are quite a few people on CWD that have experience with some of the forms of monogenic diabetes so can probably answer some of your questions.
     
  3. Amy C.

    Amy C. Approved members

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    Not all Type 1 Diabetics have the antibodies. My son was dx'd at 3 and had no antibodies. Hopefully, your doctor will return your call.
     
  4. Andy'sMom

    Andy'sMom Approved members

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    Definitely talk to your doctor about additional tests. Andy was tested through U of Chicago and they found a mutuation that caused his diabetes. It's a new mutuation only recently identified. Andy was diagnosed at 10 months so similar timeframe. He did not have antibodies either. His mutation is not like the Kir.6 mutuation, and he will always need insulin but at least we know it wasn't auto-immune. Keep pushing until you get answers!
     
  5. EmilysMom07

    EmilysMom07 New Member

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    I have heard of that mutation only this morning. I know that we will be undergoing further testing. I still have not been able to speak to her doctor about the test results that I received and where we go from here, but either way, I want to know. Thank you for the replies!
     
  6. Ellen

    Ellen Senior Member

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