Hi Christine & others,
Thank you very much for your reply. Your input is very helpful. The description of your daughter's condition does sound quite similar to that of our daughter Fenna. The website you recommended is really excellent. I don't know if there's a direct link to it on the VBF site already - their Conditions and Diagnoses list may be very helpful to other, still searching parents, too (http://www.cincinnatichildrens.org/s...ha/h/vascular/
I had never heard of CMTC before and it sounds like another plausible condition Fenna may have. Fenna's PWS is also marbled and my husband and I are actually thinking the stain may have lightened somewhat compared to how it looked for the first few months of her life. But it was winter then and we lived in a fairly cold house, too (which could have made the stain appear darker). It is hard to say.
Fortunately for us, we have had very few complications so far. At what age did Mimi's complications start? Did you find it easy to recognize that she was in pain and that her leg was bothering her? What symptoms did she have? Our most painful episodes seem to have been the PDL treatments. The last treatment actually burned holes in her diaper area - I'd advise anybody to leave out the diaper area when the doc is still trying for the right laser strength! But I have to say Fenna has been a real trooper and even took her first steps on the afternoon of her second treatment
. I never get the feeling that her leg is actually bothering her. Like I said she does have the slight limp and she also still falls a lot when she walks. Another thing we ignored but will look into again is that her pelvis was somewhat bent/crooked at birth. We thought/were told it was because of her position in the womb and that it would go away with time which it did (in about 12 months). It is not really visible anymore now.
Sorry for all the details I'm venting (this is my first time on a forum and am not sure if I'm violating some behavioral rule
Anyway, I am hesitating between seeing a new GP, seeing the dermatologist again, or just calling up the Cincinnati Children's Hospital vascular malformation clinic directly, although I am afraid they won't help me on the phone. Do I need a referal first? Does anyone have experience with cold-calling specialists/experts? Christine, do you think maybe it would be a good idea if I called Mimi's doctor?
Thanks again for all your help - sorry for the long-windedness,