Klippel-Trenaunay - How important is diagnosis?
My compliments about this site. Wish I had started looking for it earlier! Well, here we go: my 18-month old daughter was born with a port-wine stain covering her right foot, leg and buttock. She's had two treatments with Pulsed-Dye Laser under general anaestesia (at 6 and 12 months) to try to fade the stain, with 0 results. We have been seeing a very well-reputed dermatologist at the SD Children's Hospital. He is very eager to do PDL surgery. He insists that our daughter does not have any of the PWS-related syndromes as there are no "lumpy-bumpies" or swellings. However, I've always felt that there's more going on than just the superficial staining. For one, her affected leg is increasingly showing to be thinner than the other. She limps a little, even though she's been walking for 6 months now, and walks well, otherwise. Then last week an electronic measuring machine at the shoe store showed her right foot is a full 6mm smaller than the other. I was in shock!! We're supposed to return to the dermatologist this month to see about a 3rd PDL treatment. After the 2nd treatment the dermatologist said we could get X-rays made of both legs if we continue to be concerned. I am really thinking she has Klippel-Trenaunay syndrome, the atrophy kind. I'm at a loss of what to do, where to go, how to make sure we're doing the right thing. I don't even know how important it is to know if it is KTS or not, and how do we find out?? Is having X-rays made a good idea? Should we find a different specialist, and if so, who? I am open to any type of advice you can give me and am very interested in your experience.