momtocrj

Hello mok and all those looking in OKLAHOMA- I am new to posting on the forum, but not new to the forum at all...I've been reading it for about a year. We have a fantastic physician in OKLAHOMA CITY area (EDMOND--NORTH OKC) he is: Peter Stanbro, Stanbro Healthcare Group Associated with the University of Oklahoma and very familiar with Moleculera (the lab where the CUNNINGHAM panel is now funded/researched in) and PANDAS- he is the original doctor who pointed us down the road of PANDAS before we had ever heard of it. He is trained and was on the tenure track at Boston Children's (I know it has been getting some bad press but he must have left before the downfall began). Now, we know all too much about PANDAS and too closely. I honestly don't know where we would be without Dr.Stanbro and our willing and loving PCP who was originally quite hesitant (until we got very positive ASO and Anti-dnase). I would wholeheartedly recommend Dr.Stanbro and if I was a PANDAS parent not too close to OKLAHOMA, I would be willing to drive hundreds of miles for him. He never gives up, he works hard to figure out the puzzle and find solutions. I have never seen a doctor work quite like him. He is very personally involved in my son's life and in finding the best treatment for him. Problem solver. More info about my child: 11 y/o boy started symptoms around age 6 multiple strep throat diagnosis before that time (first was very, very severe case of strep throat) Originally diagnosed with ADHD-age 6 OCD symptoms started and included bathroom obsessions (having to take a bath after each time and having to strip off clothes to sit on toilet), MAJOR sleep disturbances, Some vocal disturbances (not quite to the point I could say they were tics (whistling), autism spectrum type things like having to be red on monopoly or not able to move forward Originally (and still) treated with Adderall (immediate release, 30 mg at 7 am, 20 mg at noon) (after trying many other ADHD meds) and Prozac (10 mg) Presently on the above meds in addition to Cefdinir (OMNICEF) and has been treated for 6 months (originally tried Azithromycin but didn't see significant improvement. Found near immediate response in area of SLEEP and 2 months or so for response in other areas like obsessions) ASO/AntiDNASE ALWAYS elevated--VERY ELEVATED--Slowly decreasing (but still double the upper limit of normal) since starting antibiotics NEG strep throat cultures while VERY POSITIVE blood tests CUNNINGHAM PANEL was done during a non-exacerbation and he was on the line between Pandas Likely and Pandas unlikely Have not done IVIG but would really like to