Seeking PANS doctor

[laurieinMD]

Greetings! I am new to this forum but, alas, not new to PANS/PANDAS. My now 15-year old son had his first PANDAS episode when he was three, diagnosed (by our pediatrician) when he was six. He improved a lot with prophylactic antibiotics and a tonsillectomy, though mild TS and OCD symptoms would come and go.

 

Then, rather suddenly about a year ago, his OCD took a dramatic turn for the worse. Really, really bad--hours every day spent on ritual cleansing; unwilling to eat or drink all day at school; all sorts of things becoming "contaminated"--streets, towns, even the entire state of Pennsylvania!

 

He is (somewhat halfheartedly) doing ERP therapy, but I would also like to address the medical aspect of the problem. I fear that the offending trigger this time is viral--he was diagnosed with mono a few months ago. Even before that, he was tired all the time. And he has a rather unusual medical history, which includes two bouts of viral meningitis when he was five and six years old.

 

So I think it is time to see a doc who really understands the wild world of autoimmune OCD. We are just outside of DC, and some have recommended Dr. Latimer, but I have also read some rather negative comments (outside of this forum). Dr. Trifiletti in NJ sounds amazing, and I'd be willing to travel for someone who is really able and willing to figure out what is going on with my son. It's so hard to get my son to go anywhere, I really want the doc we see to be the right one. I'd love to hear recommendations from the parent/experts on this forum!

[Chemar]

bumping up for others to see

[LNN]

PM'd you, as past public discussions of doctors have gotten heated. So we try to not use full names of doctors and I'd only be comfortable sharing my experiences privately. To view a PM, look in the upper right corner of the forum screen and you'll see an envelope to the right of your screen name. Click on it to go to your private mailbox.