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Negative for antibodies?

Discussion in 'Parents of Children with Type 1' started by MamaChrissa, Apr 22, 2010.

  1. MamaChrissa

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    At his endo appointment yesterday I finally remembered to ask if Jason had tested positive for antibodies. I have been meaning to ask, just out of curiosity. Seems he has never tested positive...always negative. The CDE assured me it isn't uncommon, I was just wondering how common. Again, just out of curiosity. I have no doubt he is T1 or anything like that. Just wanted to see how much of a "mutant" he was LOL :cwds:
     
  2. sarahspins

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    Something like 20% of T1's don't test positive for antibodies... so while their presence can confirm a diagnosis very easily, their absense doesn't exactly exclude it.

    I wouldn't worry too much about it... since it doesn't really change anything.
     
  3. Kunkfam

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    My son would be one of those without antibodies as well.
     
  4. hawkeyegirl

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    I know Michelle (frizzyrazzy)'s Ian doesn't have antibodies.
     
  5. Yellow Tulip

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    My DS doesn't have them either...
     
  6. Alex's Dad

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    My daughter doesn't have them...but we stop worring about it.:rolleyes:
     
  7. Colleen

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    Erik was never tested. I have no idea.
     
  8. lil'Man'sMom

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    Manning does not have antibodies either. We were told that approximately 15% of T1 do not.
     
  9. wdhinn89

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    Just out of curiosity, if you were to test negative for the antibodies, would you still pass it on genetically?
     
  10. frizzyrazzy

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    my big worry is that IF there is a cure that is based on stopping the autoimmunity, what becomes of our kids????

    otherwise I rarely think of it. He has no insulin production but he also never gets ketones. (even a bad site/ total blood up the cannula yesterday - and a 451 left us with no ketones)
    he also takes on the low end of the insulin scale - yet within normal ranges.

    so I'd like to hear what other "no-antibody" kids have.
     
  11. Kunkfam

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    I actually have the same worry for my son! Would a cure for them be different than someone with antibodies?? Would the cause of type 1 in this case be different than others with antibodies??

    As far as insulin needs and ketones go for Matthew, he does get them but very rarely and if any a small amount. He is also on the lower end of normal as far as insulin needs and the amount he needs hasn't increased all that much overthe last 3 1/2 yrs. Carb ratios and things have remained roughly the same as when he was diagnosed. Only small changes. I would be curious to see if this is the same for most with no antibodies.
     
  12. momof2here

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    This is my concern to a 't'!

    I have also thought that the more simplified approach to curing a type 1 with no antibodies is likely commonly overlooked (the big concern is to get the insulin producing cells to 'take' and not be attacked by the antibodies. Where would WE be (the children who have no antibodies) if the research began to focus on getting the cells to replenish and or 'take' without fear that they will be attacked? Would a cure be nearer? It doesn't appear that it is ever looked into, from my research on the research.

    My brother died a day after getting the booster for pertussis. The 'real' pertussis, that they quietly do not use anymore, is one of the most deadly substances known to man. I tried to tell his pediatrician that he cannot get pertussis b/c of the death of my brother. They told me they never heard of such a thing and gave it to him anyway, telling me that I didn't have a choice. Well, here we are now, in a much different internet age, where I found a book that talks about pertussis and what it has done to children (the book was out there back then but I didn't know about it) AND the signs that Johnny had, for years (which appeared as hypoglycemic episodes) are something that were talked about in the book about pertussis potentially causing type 1 diabetes (among other things). It says that the pertussis causes the pancreas to overproduce insulin to the point where it burns out the pancreas - resulting in type 1 diabetes. It says that it takes years of this burnout to result in type one. My son had (now that I know what they were) a wealth of hypoglycemic episodes leading up to type 1 - from the age of 4 on. I never knew that is what they were but I know now.
     
  13. MamaChrissa

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    OK, this is getting weird! :eek: I honestly can not remember the last time J had ketones! I believe he only had low ones at DX, as well. He is also on a low but "within normal limits" insilun need group too.

    I never thought of the whole cure dealie...but now I am, of course. ;) Interesting, to be sure!
     
  14. momof2here

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    I wanted to add that after the dpt shot Johnny was not wakeable for 45 hours. I took him in and they took vitals which seemed okay but he slept while he ate and didn't wake for anything.

    Also, he has never had ketones.
     
  15. tresmom

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    I have two kids with T1 and one with celiac so I'd say yes. One of my T1 had antibodies, but the other one didn't. My other dd also just had her TSH levels come up abnormal so they are retesting her in 6 weeks. I'd say yes still on the hereditary.
     
  16. Ben07

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  17. buggle

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    Brendan has never had ketones -- not even at diagnosis with an A1c over 15. He has very high IAA antibody.

    Remember that the antibodies that they test for are those that are 1) known and 2) have tests developed. Only at the big centers do they even test for 4 antibodies. Most labs only test for 2.

    My guess is that people produce antibodies at different times and that there are lots of different T1 antibodies that haven't been discovered yet or that they haven't developed tests for.
     
  18. Yellow Tulip

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    My son has no antibodies. He does not get ketones easily, but he does get them. He had high ketones at diagnosis and once more, during a stomach bug. Also, his insulin requirements have been going up in the past couple of months. I'd say he now takes about double what he did 2 months ago (after 2 nasty stomach bugs). Some of you mentioned your kids being on the lower end of the normal insulin needs. What is considered "normal"?
     
  19. Ali

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    Agree with this. In terms of cures relating to focusing on protecting from immune attack, all people have to take drugs to combat this when a foreign substance implanted. So those who do not test for the currently tested antibodies would still have to take drugs to keep from rejecting any insulin producing cells put in their bodies. But I agree we all worry that we will be the subgroup not covered with the "cure". :)ali
     
  20. mrcool

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    My son was negative for 2 of the antibodies he was tested for (GAD65 and ICA 512). It was explained that possibly the test wasn't sensitive enough. More likely though he just didn't have those particular antibodies.

    He gets ketones easily when sick and was in DKA at dx. And while the I:C ratios and ISF have stayed pretty much the same since dx, basals have been going up.
     

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