New IVIG study?

[Priscilla]

I may be a little late on this one, but I just watched a video YOU TUBE and Dr Susan Schulman stated that there is new a study underway for IVIG treating PANDAS, I think 30 children are to be studied. I just want to see if anyone knows about this. Where is it being done? can we follow the study?

[thereishope]

To my knowledge the study isn't underway yet, but you can check the NIMH to see if they are recruiting. The study she is refering to, they touch base on in the recent NIMH post

http://www.nimh.nih.gov/about/director/index-ocd.shtml

[P_Mom]

Yes, Vickie is right. It hasn't started yet. I was contacted and did a practice phone screening with them. They wanted to see how their screening was working and how the parents felt about it. They ask you a bunch of questions, then, they score you. If you fit in the range of severity they want for this IVIG study, you will probably qualify. I was told to answer the questions as if this just started with my younger son back in 2007 when he was BAD. He scored well within' the range for admission to the study....but, this was just practice. He wouldn't qualify now. One catch is...your child has to be in acute initial onset, OR, in first major exacerbation to be considered.

[Priscilla]

Thanks for your reply. We have been fortunate enough to have IVIG covered by our insurance, just completed 2nd infusion on Aug 28. I would just like follow the study, very interested in the results. I suspect my dd has been suffering from this for a long time. Acute exacerbation in April still not under control. I think it was building since last dec though. Just trying to be patient and give time for IVIG to work.