JAG10 Posted April 29, 2010 Report Posted April 29, 2010 I've read several folks make reference to or mention an IVIG clinical study that is either in progress or finished and in the analysis phase. Does anyone have specific info to share about this? Which docs are involved? Parameters? When it is due out?
trggirl Posted April 29, 2010 Report Posted April 29, 2010 Just bumping this up a bit. I have heard about this also and was hoping someone had more details.
Mary M Posted May 1, 2010 Report Posted May 1, 2010 I've read several folks make reference to or mention an IVIG clinical study that is either in progress or finished and in the analysis phase. Does anyone have specific info to share about this? Which docs are involved? Parameters? When it is due out? At this point, we'd volunteer to participate in such a study.
Diana Posted May 2, 2010 Report Posted May 2, 2010 Hi - yes I know a bit about the study and it is currently under scientific review at the NIMH. Dr. Swedo hopes it will pass muster by the end of Summer if not sooner. Currently it would sadly only be for kids who have had the FIRST exacerbation, only 30 kids. They want to prove so specifically that it occurs and then it remits with abx - that there is a sudden and specific, dramatic onset. The fear of letting kids in that are having a 2nd exacerbation is that they may not #1 get better with one IVIG alone and #2 - would give room for critics to say that the kids have some other strange infection....etc. You get it. They will be looking for brand new pandas cases....god forbid. I hope this helps. PM me privately if you need me to fill in more as I don't sign on often for now. Take care, Diana Menlo Park, CA
Diana Posted May 2, 2010 Report Posted May 2, 2010 OOPS Correction! Should have said "Kids who are in their INITIAL ONSET!!" NOT exacerbation. OKAy- so the study is for kids who are having their FIRST, INITIAL onset. tx, diana
JAG10 Posted May 2, 2010 Author Report Posted May 2, 2010 Thanks Diana! This is interesting. Do you know if there will be sibling parameters? I was thinking families (and their medical teams) that are already aware of PANDAS, and Swedo ect., would be more likely to catch an initial onset? Not that we would wish this on anymore of our children!
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