PANDAS

[ratlenhum]

Thanks for the kind words everyone.

 

I've actually posted here before for a while but couldn't remember my user name, and had to start a new one.

 

My son gets his IVIG at home. We flew from NY to CA to see Dr. Gupta. Our DAN sent us out there rather than write the script himself for some reason. He is primarily getting it for the PANDAS. His PANDAS profiles are the "worst I've ever seen" according to 2 different doctors and one physicians assistant. Even his pediatrician, who knows nothing about PANDAS but knows what the antibodies they tested for are, said they are horrible, scary numbers. We were basically told that my son's brain is on fire and that IVIG would be the fire extinguisher.

 

I emailed with Dr. K a while back, when the PANDAS first started and he told me something along the lines of because of teh co-morbid condition of autism, he really wouldn't see my son. I thought that was odd.

 

We didn't do a steroid burst according to how I hear others describe it. My son did do 4 Bicillin injections and saw nothing. Then he did 30 days of zithromax and saw nothing but GI issues. He did do a medrol pack and saw nothing with that either.

 

Is there a set protocol for the steroid burst?

 

Sarah, I'm definately curious to know why they don't think IVIG will help in your case. Is it PANDAS in general or just your particular situation?