MY SON JACOB IS 11 YEARS OLD HE HAS A PWS AND AVM BEHIND HIS EYE AND THEY THOUGHT HE HAD STURGE WEBER BUT HE HAS NEVER HAD ANY SEIZURES. HE HAS HAD 8 LASER TREATMENTS AT SHRINERS BURN HOSIPTAL IN GAL.TX. BUT I REALLY SEE NO CHANGE . HE HAS HIS EYES CHECKED EVERY 2 MONTHS. THEY DID A ANGIO GRAM WHEN HE WAS 5 AND THE DR TOLD ME AS LONG AS HE HAS NO SEIZURES THEY WOULDNT TOUCH IT . WELL HE HAS GLAUCOMA HAS A LEARNING DISABILITY JUST READING. BASICALLY I NEED TO FIND A DR. THAT WILL NOT LEAVE ME WITH WHAT IFS .IT HAS BEEN 6 YEARS AND I DONT KNOW WHAT TO DO WHAT IF HE HAS A SEIZURE AND HE IS AT SCHOOL OR JUST AWAY FROM ME I CANNOT GET ANY DR TO HELP MY SON IN OK. IT HAS TO BE SEEN OR TREATED THERE IS NOWAY I CAN GO ON LIKE THIS.
An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate
medical professionals for evaluation and/or treatment, provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and
supports research and programs that promote acceptance for individuals with birthmarks.
Information accessed through the VBF is presented in summary form
in order to impart general information relating to the diagnosis
and treatment of vascular birthmarks. Such information is not complete
and should not be used as a substitute for a consultation or visit
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through VBF website is not exhaustive and does not cover every aspect
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care related questions regarding this matter, please see your physician
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