As I posted earlier, our 15 yo son is being treated for his first onset of PANDAS by Dr. Zinser out of Children's Medical Center. Just had a follow-up visit today (2 mo post-treatment) and I can't say enough about Dr. Zinser and the neurology clinic at Children's. We are dealing with a disease where the rule is that you fight tooth and nail to get whatever diagnosis and treatment you can and in many cases it's still not enough. We arrived early, were seen early, and spent a HALF HOUR with Dr. Zinser. I know some of the "destination specialists" (as I call them) do spend that kind of time, but that should be expected after the herculean effort the parents and children make to get there. Whether it's really all that unique or not, I couldn't be more pleased. He has a very sound understanding of PANDAS, fully accepts it for what it is, and aggressively treats it. Combined with our pediatrician, this is hands-down the best care our son has ever received for any illness. Dr. Zinser listens, expects parents to be fully involved, welcomes your research, acknowledges where you are right, and provides explanations where you may not be. I was surprised at how thoroughly our son was tested for every other possible illness and disorder, including Lyme, without us even asking. All the test results were reviewed and explained today. I could go on, but I have to go.
If anyone is having difficulty getting the right treatment and would like to consider Zinser/Children's, I can help. Just PM me. I mentioned other parents fighting to get treatment out there and he is willing to consider all cases.
PS - Our son received Gamunex IVIG, 1.5 g/kg over 2 days (I know some like to know). Doesn't look like any more will be necessary.
Edited by TexasDad, 11 February 2011 - 12:41 AM.