NIH PANDAS study

[_Misty_]

I thought I posted a reply earlier today and it didn't show up. Hmmm. Anyway, Yes! She's accepted and we fly out Sunday. There is some concern that she won't meet the severity requirements, but we'll just have to see when we get there. I don't know exactly what they base it on...her OCD is almost constant, but her particular Obsessions and Compulsions allow her to function for the most part. She has some separation anxiety and trouble falling asleep and wakes and comes to our bed during the night, she having some defiance and age inappropriate behavior and one mild tic. We homeschool, so we can trudge through most of it. If she was in public school I don't know that she would be able to go or do her work in a classroom setting. I have to sit beside her and constantly redirect her attention because she is SO distracted. She requires complete one on one attention for school. Most of her OCD stuff is reassurance seeking, so it is really wearing me down. I can't have any thoughts of my own because she is constantly rattling off her thoughts and questions. I am still apprehensive about the spinal taps, but we're desperate to get her better. The study is coming together really quickly.

 

michiganpandas- I was wondering that about severity. If she was as severe as she was with her first episode there's no way we could have travelled or gotten her to participate in tests. She was raging or running from us or crying and having meltdowns for hours a day. They wouldn't have let her on a plane without us giving her something to calm her down.

 

JPDad- You go for a week the first time, a week 6 wks later and then 2 visits that are only overnight. My husband won't go the last two times and he's scraping by on leave for work. I have three year old twins who will stay with grandparents...that's the hardest part for us. In the long run, though, we feel it's worth it to have a chance at free IVIG with all our travel paid.

 

tpotter- Wow! You've done a lot of treatments. I'm not looking too far ahead just yet, but I do have an appointment with one of the PANDAS docs in the back of my mind. We'll see what happens this week with the study. If she doesn't get accepted, My next step is to ask to change her antibiotic to Zithromax (she's on amoxicillin). We did 5 days of Zith about a month ago that helped a little but now she's getting worse and worse. We've been in this exacerbation for 6 weeks, but we haven't made any changes for a few weeks because we were working on getting into the study.