Hi Kim,
I was looking at some of the resources here on this site for people with Sturge Weber Syndrome. This support group was listed:
http://swscommunity.org
Perhaps that group would be helpful to you. Most people on this forum are dealing with hemangiomas so you might not get too many responses about your specific need. But maybe others on the Sturge Weber community will have had some similar experiences that would be helpful to you. Good luck!
Shannon