My daughter was just diagnosed with Parke-Weber Syndrome by the Boston Childrens Hospital. They reviewed her MRI, Dopplar, and pictures of her and came to the conclusion that it is Parke Weber Syndrome. I am scheduled for an appointment in January, being I am living out of the country now. Melanie´s left thigh is 5cm wider then her right and she has appox. 1 cm difference in length. Melanie left leg is very warm to touch and has slight redness. Melanie is a normal active 7 yr. old and has no pain or problem walking. I am very confused of what the future holds for Melanie and I am just curious if any other parents have had their child diagnosed with Parke Weber. If anyone know where I can get more Information about this vascular malformation PLEASE help us with our insecurities. Boston Childrens Hospital has been extremely wonderful. But I was just wondering if anyone has gone through what we are going through and what the future holds for our precious child.
??? I would love to here from anyone out there. They say we just have to sit and wait. Puberty they say is when we have monitor Melanie more. ???