My 3 Year old

My 3 Year old has a port wine stain on the right side of his face. I have one doctor that says he has Sturge Weber Syndome and one that says he doesn't. He also has a large head he is missing 2 of the 3 jugular viens in the lower back of his head . The doctors say they have never seen this before. He has really bad headaches and the doctors are just ignoring me I think it's because we don't have money. Please can so one help me understand about the port winestain, Sturge Weber Syndrome, and the missing jugular veins. thank you!

Hi. My son has a PWS and SWS. He doesn't have any jugulars missing. Has he ever had a MRI? Seizure? Does the PWS cover the eye or very close to the eye? If so, has he been to the eye doctor? When you say he has a large head do you mean macrocaphly or hydrocyphilus? (sorry not sure that is spelled right) Where are you located? Some doctors that have never dealt with SWS don't really know what they are looking at. Has he been to the neurologist? If so is he/she the one not wanting to do anything about the headaches? Austin has headaches since he was very small infant. He is on an anti-seizure med that also helps controll migranes. If you would like to privately emeail please feel free mom2austinhunter@msn.com
Hugs,
Jinny