Vascular Birthmarks Foundation Forum - View Single Post - PWS on Leg - Concerned parent - what to look for
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Old 07-02-2012, 11:11 AM
abatie abatie is offline
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Join Date: Oct 2009
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Okay so first off my child doesn't have a PWS but rather CMTC but has it all over one leg so I understand the size of what you are looking at and dealing with. I had the same experience as you in the hospital-three doctors/specialists all told us "it's just a birthmark". Oh how wrong they were. One nurse told us that she felt derm. should be called and we asked her to go ahead and make the call. He actually came in and talked about CMTC that day but told us it was so rare that it just couldn't be that. After seeing him three more times over the next six months he sent us to Mayo Clinic to see a pediatric derm. who diagnosed her. A derm. is a good place to start but you may also consider a vascular specialist. I would look on the list on this site and see if there is someone close to where you live. Becca was also thought to possibly have KT Syndrome at birth. We had one doctor tell us no to that but Becca will be seeing a world leading specialist on CMTC in two weeks at the CMTC conference. Hopefully a more reassuring diagnosis that we will know is correct. PWS are not as rare a KT Syndrome. I would get it checked out soon just for peace of mind. I would leave measurements to the professionals because even among them they are always different.
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