Elissa is right. There are a few doctors in this world that know how to treat this... seek opinions from the top docs.
The doctor in St. Louis Elissa speaks of in St. Louis
Dr. Waner (he is the top doc in Vascular Anomalies and is often very open to consulting with other physicians).
You are not alone. We are here and if you would like to join a wonderful support group. Elissa and I both belong to: http://groups.msn.com/vascularbirthm..._whatsnew.msnw
Good luck. You have come to the right place for information and support.