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[quote=Anonymous]I'm a NP. Best neurologist in the area for PANDAS/PANS is Latimer in Bethesda. Long wait for first appointment, doesn't accept insurance. Many travel to specialists in other parts of the Northeast, such as CT or MA, including us.

If you can get accepted in the NIH study, do it. We couldn't get in it for a number of reasons. We had a very difficult year in which our child went from normal to totally falling apart before we finally figured out it was PANDAS/PANS (caused by long-term undiagnosed sinus infection). A very long course of antibiotics along with a  short dose of steroids resulted in a big improvement but still no where near normal, and 8 months after diagnosis my child and our family were still really suffering. It took IVIG to get my child back to being  functional -- my child also had an immune deficiency that we hadn't known about until bloodwork showed it. That immune deficiency got us insurance coverage for IVIG, thank God, because it runs $10,000+ per treatment.

Six months after IVIG my child is doing better than she's done since all this started and is on no ongoing medications (except allergy medication, which was needed pre-PANS) but we may do ongoing IVIG's if our child keeps getting infections and going into PANS flares due to immune system problems. PANS is really really rough and traumatic-- hang in there -- but there is hope and seeing your child finally start to come back after treatment is....no words can describe how much I treasure every normal moment that we have now after living through the depths of PANS.

The best public forum for advice from those who have been there is at latitudes.org. You might head over there for support and information.[/quote]

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