Where do we most need research? Input please!

[browneyesmom]

Hey everyone... my step-daughter is currently studying Bio-Medical Sciences in grad school that is affiliated with a medical school. She mentioned my DD11's condition to one of her professors, who showed an interest in it and I understood she was going to check into people doing research on it. I was in the airport at the time, so I may have misunderstood her, but... just in case we wind up with an "in" here, I intend to make full use of it!!

 

I am working on an email to her atm and wanted to check with all of you about areas we MOST need research right now. Here is what I have so far:

 

1. 
    
   
2. The areas we most need research right now are in proving the association of auto-immunity attacking the basal ganglia following strep infection (or other/co-infections, such as myco or Lyme) as well as demonstrating effectiveness of IVIG for PANDAS kids. While it is being used with excellent success in many cases, many insurance companies do not cover it at this time because it is considered "experimental". It costs over $ 10,000 (for the infusion alone, not counting any travel), so many parents face a very difficult situation with their children.
   
3. Same thing goes for long-term antibiotic use... although not as expensive.
    
   

 

I'd welcome input as we pull together to help our children. Thanks!

[Priscilla]

well my dd has just tested positive for lyme (just missing cdc guidelines, but signficant enough for llmd and a pretty remarkably low cd57)While I am still processing this and deciding where to go with treatment, its got me wondering. I thought she was so textbook PANDAS, she has almost every criteria, and elevated titers, responded well to abx and ivig, but not enough. I have often wondered why there is such a cluster of PANDAS children in the east, where there is certainly a denser forest and higher population of tics (not that lyme is restricted to that area, probably a higher risk though). After reading "cure unknown", it makes sense that an underlying lyme epidemic could be actually causing PANDAS, along with alot of other ills. I would be very curious to see what research could find on the link between lyme and PANDAS. So many of our children our being diagnosed with it, and like I said, the cluster is interesting to me.

[browneyesmom]

Thanks for the input, Priscilla! We live on the east coast and I'd be interested to learn more about that, as well.