The doctor is sending a script for lab work and honestly, I hope he finds something. Your responses have been super helpful. It was comforting to know I am not the only one that did IVIG and have not seen the improvement I hoped for. After reading these, I am thinking we did not keep my son on his antibiotics long enough. That would be our fault more than the doctor's.
I know many speak of herxing. I am not convinced that is what we saw, but the behaviors became so serious from various antibiotics that we would stop/change them. My son is tall and his safety was literally at stake. It continues to be a severe issue and we are currently home bound. Anxious to get the labs done. Thank you.