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Grant - Positive Results for GAD65 and ICA

Discussion in 'Parents of Children with Type 1' started by momandwifeoftype1s, Dec 6, 2009.

  1. momandwifeoftype1s

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    Grant (non-diabetic son) was tested last year for Trialnet, and he was negative. I just got a call today that his results from this year (end of October) are positive for GAD65 (biochemical marker found at time of diagnosis) and ICA (islet cell antibodies). He was negative for IAA (insulin auto antibody and ICA 512. I hope I got this right... :eek:

    He's moving on to Phase II of the Trialnet study, and he'll have an oral glucose tolerance test, AIC test, and genetic test to see if he has a protective gene.

    He may be eligible for the oral insulin study (to prolong his pancreas' function) if the results of his oral glucose tolerance test show that his insulin auto antibody is not positive, his oral glucose test results are normal, and that he has an absence of the protective gene. Of course, the oral insulin has a possibility of being a placebo. We won't know. We also want to help with research for all families, so it's not just about Grant.

    I'm sad about his positive results, and I hope that he does not develop diabetes before the Phase II testing (in February). I hope that his tests come back negative. I hope we're doing the right thing with Trialnet studies. Grant -my angel... :(
     
  2. bgallini

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    That must be scary. I hope he doesn't develop D. They say that having the autoantibodies doesn't mean you'll get D. But I think it's a good thing to do the Trial Net study. You may be able to prevent him from getting D or delay it at least. And you are helping with the research!
     
  3. momandwifeoftype1s

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    Well, it's a tough call as parents to know what is the "right" thing to do. We're doing what we think is best for our family. Luckily, Grant thrives on positive praise and the attention from the wonderful Trialnet site coordinator. They use Emla cream to numb his arm before they insert the IV in his arm. Grant has been having pee accidents this year, so I'm not entirely surprised that his results were positive. I just hope that my mommy insticts are wrong. We'll see...
     
  4. OSUMom

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    Grant really is an angel. He is sooo precious!!! ....and he and everyone in TrialNet are my heroes. You all are in my thoughts and prayers, Amy. Hugs
     
  5. momandwifeoftype1s

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    All our kiddos are heroes. :cwds:
     
  6. OSUMom

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    Absolutely!!!! :cwds::):cwds: ...including the adult kids! :)
     
  7. 2type1s

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    Amy...just now reading this. I've been putting off Bailey repeating her trailnet...guess I'll take her next time. I'm so sorry. I will of course pray that all ends well. Call me if you need anything.
     
  8. slpmom2

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    I'm sorry to hear about Grant's results. I hope the Phase II testing tells you something other than that he's headed for D.

    My older dd (non-D) was just re-tested, too. I don't expect any changes from her negative results about 18 months ago, but I'm kind of holding my breath until we get her results back.
     
  9. momandwifeoftype1s

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    Always bad news when you get a phone call with test results on a Sunday. :( I had completely forgotten about Grant's test. Ah, well. Such is life...
     
  10. Daniel's Mom 1993

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    Amy, I will be praying that Grant remains non D. I think it is good to do the trials as it helps them learn so much that will hopefully help with a cure for our kids or grandkids. Keep us posted.
     
  11. momto3girls

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    My oldest daughter tested positive as well. They told me she was positive for three out of the four antibodies that they test for (don't think they told me which one was negative). We went for Phase 2 back in October and about a month later they called with her results and said after Phase 2 they found that she is positive for only 2 out of the 4 antibodies right now. When we went to Shands Hospital for Phase 2 they told us that she had a 50% chance of developing T1 within the next five years. After she tested positive for 2 instead of 3 they changed it to a 25% chance. We have to go back every six months to be retested.
     
  12. slpmom2

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    Did they offer her the opportunity to participate in a prevention trial? Or do you need to have 3 or 4 antibodies to qualify for that?
     
  13. Judy&Alli

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    Amy have you ever tested his bg? Sorry about this but if you can prolong it that would be great. Hugs to you Amy!!
     
  14. StillMamamia

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    Amy, HUGS!!!
     
  15. momto3girls

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    When we went initially and they said she was testing positive for 3 out of 4 they told us the 4th one is the one that she would have to be positive for in order to participate in the prevention trial. So for now I guess we just wait, watch, and pray.
     
  16. momandwifeoftype1s

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    Yes, I've tested him this past year because of his peeing accidents at school and home (unusual for him). He's had several numbers over 125 (up to 187), but never above 200. His numbers have been steadily creeping up in the past year, but it's not consistent. He usually hovers around 100, with some odd "off" numbers. He's always thirsty, but that's not usual for Grant. I am really trying hard to restrain from testing him at home. He doesn't mind the finger pokes, and sometimes even asks for a test (I know that sounds weird). We know that we would catch it quickly if he were to develop D. Connor was in the 400's when he was diagnosed and not in DKA. There are some "benefits" of being hyper-aware of the symptoms with two family members who have type-1 diabetes. It does cause me anxiety though. :(

    We hope that he is not diagnosed when they're doing the oral glucose tolerance test and AIC. He wouldn't be eligible to continue with the trial if he's diagnosed (no chance of the oral insulin), and we'd have another child with D. We have decided not to do the Phase II testing until after the holidays and his birthday (day after Christmas). His testing will be on February 15th, since he has that day off of school.

    I'd appreciate any prayers/good thoughts that they'll find that he has a protective gene while they do the study and/or that he just plain never develops diabetes even if he has the markers for it. I also am praying that he won't develop D before February 15th, which would automatically make him ineligble for the study. So many factors...
     
  17. Sherry Wendi's Mom

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    I too received the news that one of my non-d kids tested positive for 2 of the antibodies. I did not think to ask which ones, as this is all new to me. Robert is scheduled for the next battery of test next week.
     
  18. momandwifeoftype1s

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    It is hard to know what questions to ask while you're receiving lousy news. I tend to write everything down, but that's because my memory is terrible. Please let me know how things go with Robert's tests. I'll be thinking of you both.
     
  19. momandwifeoftype1s

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    I don't if there is a significant difference in the chance of getting D between the different antibodies. I know that Grant tested positive for GAD65 and ICA (Islet Cell Antibodies). He was negative for the IAA (Insulin Auto Antibody) and ICA 512 (I think???). I know that during the phase II study, they will do a genetic test to check for the presence of a protective gene. He will not be eligible to continue with the study if he has that gene. I'm sure there are many, many factors contributing to Grant's risk of developing type-1 diabetes. Having a brother and dad with type-1, my own autoimmune condition, and now having positive 2 positive antibodies - doesn't sound too great. Who knows, though? I hope that your daughter continues to avoid getting diabetes. I can probably understand what you're feeling, if that helps you in any way. Hugs to you and your daughter.
     
  20. momandwifeoftype1s

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    By the way, I appreciate everyone's input and support here on CWD. This is something that I don't want to share on Facebook or with local friends/family. Only you guys get it, so a big thank you! :cwds:
     

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