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5 Bumps

Are there any other parents out there dealing with P.A.N.D.A.S. ?? (Pediatric Autoimmune Disorder Associated with Strep)

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lizinohio

Asked by lizinohio at 11:56 AM on Sep. 8, 2010 in Kids' Health

Level 4 (36 Credits)
Answers (11)
  • No, not dealing with it but I'll bump you (I looked into years ago because I thought it was something that was impacting my son).
    FootballMom85

    Answer by FootballMom85 at 12:00 PM on Sep. 8, 2010

  • No, never heard of it!
    sstepph

    Answer by sstepph at 8:35 AM on Sep. 9, 2010

  • I have never heard of it, sorry!
    KTMOM

    Answer by KTMOM at 6:09 PM on Sep. 9, 2010

  • no, but here's a bump! Hope you get the answers you need
    Ashlynnsmommy07

    Answer by Ashlynnsmommy07 at 12:47 AM on Sep. 10, 2010

  • Thanks for bumping it, this is a rare thing and I would love to connect with other parents, sometimes it seems hopeless, sometimes it seems our son is getting better, our doctors even seem clueless sometimes...I don't know if he is getttin better or if it is wishful thinking sometiems. Our son's reflexes went from perfect to almost uncontrolable, our doctor said physical therapy is the answer, we tried it and no change. the doctor said our son's body attacked it's own nervous system, after lots of meds and bloodtest, doctor said it was good because the bacteria is out of his blood syster, another doctor said those numbers dont mean anything? so confused...
    lizinohio

    Comment by lizinohio (original poster) at 9:04 AM on Sep. 10, 2010

  • i'm sorry, i don't know,
    but here's another bump...
    and coming from a mom that has a child with hypertrophic cardiomyopathy, idiopathic hypertrophic subaortic stenosis... and other health issues... i know how it feels to be out there alone... i have not found ONE other parent whos 3 year old has cardiomyopathy in the year since she was diagnosed... no one can help, the drs tell us what the "statistics" are... which are not out there for kids but people in their 60s... ugh! hang in there mama...
    asil

    Answer by asil at 12:12 PM on Sep. 12, 2010

  • I am the mother of a 6 year old with PANDAS. For the best support group, please visit http://www.latitudes.org/forums/index.php?showforum=17
    pandasparent

    Answer by pandasparent at 8:27 AM on Sep. 18, 2010

  • Thanks, I checked out the group and I am still confused! lol every doctor we see says something different and the people in the support group even disagree about things and methods of treatment. Some say the kids are "cured" others say there is no cure. It seems like everyone's drs are on a different page and here in Ohio I don't have many places to choose from either.
    lizinohio

    Comment by lizinohio (original poster) at 6:37 PM on Sep. 18, 2010

  • nope gl
    mekarevell

    Answer by mekarevell at 2:03 PM on Oct. 19, 2010

  • I have alot of experience with PANDAS_ask away!!!!
    LadyMomDonna

    Answer by LadyMomDonna at 9:11 AM on Oct. 21, 2010

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