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Who has heard of PANDAS- pediatric autoimmune neuropsychiatric disorders associated with streptococcus

We are meeting with the pediatrician tomorrow to ask whether he thinks this might be something that our 6 year old son is dealing with. I'm curious as to whether or not any other moms have been through this and have any advice as to questions we should ask, or any groups on here that might be helpful. If he has this and it can explain even a little bit of the behavior issues we've had, it would be amazing.

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kryssie78

Asked by kryssie78 at 8:29 AM on Oct. 8, 2013 in Health

Level 4 (55 Credits)
Answers (4)
  • I've heard of it, but have no personal experience with it. Bump for you. hope you get some answers.
    2autisticsmom

    Answer by 2autisticsmom at 8:34 AM on Oct. 8, 2013

  • thank you ladies :) we have had a really rough year. We've been fighting my insurance to get a neuropsych done on DS for almost a year now, and *here's to hoping* it's finally right around the corner. Anyway, last year his behavior would escalate dramatically for no reason, roughly 2 weeks after the escalation he would test positive for strep. He ended up getting strep in Feb/March/May of this year and had numerous suspensions/calls home/pick ups and other behavioral issues during this time. Well about 2 weeks ago (this year he is in a different school with a special behavior program) his behaviors started spiking again and I felt he was acting like he had strep. Other than the behavioral issues he wasn't symptomatic in anyway... no sore/red/swollen throat, no fevers, no general malaise. He was acting like a damn punk honestly. So I brought him to the pediatrician for a strep test. The rapid came back negative (cont)
    kryssie78

    Comment by kryssie78 (original poster) at 12:31 PM on Oct. 8, 2013

  • and i felt like an ass for dragging us both through the experience... (a nurse and myself to hold him down and he came up punching so i took a couple shots to the head. Not a shining day in my motherhood book.) That was a Friday. Monday's behavior was so bad he was suspended on Tuesday which was when I took the phone call from the pediatrician telling me his send out strep test came back positive.
    kryssie78

    Comment by kryssie78 (original poster) at 12:33 PM on Oct. 8, 2013

  • even the nurse that called me at home to tell me it was positive couldn't believe I only brought him in based on his behaviors. In a conversation to a friend of mine with an autistic son, I told her what the nurse said and she did some research for me and came back with PANDAS. I don't know if it's a reason, but I feel like its the first thing we've had to go on for a year now and it makes me hopeful that maybe we'll be able to get him down to his base behaviors and find out what is really going on with him.
    kryssie78

    Comment by kryssie78 (original poster) at 12:37 PM on Oct. 8, 2013

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