Vascular Birthmarks Foundation Forum - View Single Post - Parkes weber? AVM on buttock and leg
View Single Post
  #5  
Old 11-04-2008, 09:23 PM
dweiss1973 dweiss1973 is offline
Junior Member
 
Join Date: Nov 2008
Posts: 1
Default Son w/ Parkes Weber

Hi:

I have an 11 year old son w/ Parkes Weber. He has a port wine stain the whole length of his right leg. His thigh is 2" larger in diameter and his length is now 6cm longer than the left. His leg is hot to the touch and that is why he received the diagnoses of Parkes Weber. He sees a team of specialists at Cincinnati Childrens Hospital (Cincinnati, OH, USA). He recently had (2) 2" pins placed in his growth plate in his femur to slow down the excessive growth in that leg. He receives an MRI and a echocardiogram every year. He has yet to show any signs of heart trouble...thank goodness.

Please email me if you are interested in talking.
Reply With Quote