If you have not looked at our list, please do:
http://birthmark.org/node/47
Dr. Comi is in Baltimore. You can contact her through our Expert feature. She is the expert for SWS, but she can help answer some of your questions
http://birthmark.org/experts.php
Everyone in Virginia is more south than you, perhaps. But there is not a single doc listed in MD that I haven't heard good things about.
Parents with experience, more direct experience, will be along soon, though.
Missy