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Bearmom

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  1. Surprised that the people in the study haven't gotten more info. It sounds like the research went array and if kids didn't do well with placebo they were given ivig .. This would make the study invalid I'm guessing ?? I'm so confused by this entire study and it only makes me mad because it's so hard to people to believe in pandas that this community can't afford any blips!!
  2. I also was lucky and found a pediatrician to treat it! I would never put a 3 yr old on Zoloft!!! I would ask for Keflex or augmenting as they are what seems to work..prefer Keflex ( Cephalexin) My doc uses Keflex and NSAIDS only.. and has great results. He has over 40 patients. Do not wait because the more flares there are the harder it is to get to baseline. Good luck!! The hard thing with specialists is that they don't have the big picture! A pediatrician does and can prescribe he meds needed.
  3. Hi Friends, I figured out how to share this document ( don't mind the notes in the margins). I am trying to figure out the IVIG study results from NIMH. It seems as though the study in 1999 was successful but in 2015 it was not. I have not seen much published since I attended this conference and I am hoping that someone can help me better understand where things stand with it now. Has something been published and I missed it? https://drive.google.com/file/d/0BzX097TgW8z8dy1oTTdGZC1EbDg/view?usp=sharing
  4. The study of Ivig by Williams and Swedo in 2015 was not significant .. I'm looking for further published info but at the Brown conference they shared a PowerPoint showing no difference between placebo group and Ivig.
  5. Last year I attended a conference at Brown on PANDAS. An IVIG study done at NIMH was presented and I am curious if anyone has seen any published information on this study. The results presented were not convincing that IVIG was effective in treating PANDAS. Many families are still paying large amounts of money for IVIG and fighting insurance companies. I'd love more information should anyone have found further information connected to this study.I do have the powerpoint but it is too large to attach. I am happy to share it through email.
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