Hi Elena and Julie & everyone else,
Thanks much for your replies. I am very moved by your offers to help us! It is heartwarming to get these responses and be able to talk at a "normal" level about our case of PWS, instead of having to downplay it. I also heard a lot of the well-meant "just wait it will fade with time" from people. One mom in the zoo almost attacked me because she thought my daughter's leg was caught in the back carrier. I guess the fact that she was smiling and sitting happily was not enough to show she was fine
We are in the San Diego area, so not really next door to Boston or Minnesota. I do have the feeling I should see someone who is really familiar with KT because if she has it (which I still really think), she has the much rarer atrophy type. In most descriptions of KT you don't even read about this possibility. I think it is the same as what that golf player Casey Martin has.
Now I am mostly debating who to see next. After reading so many posts and websites, I am thinking it may be worth the trip and go see the experts who really know KTS, instead of hoping that our local dermatologist will look through his books again after our repeated visits.
Yes Julie, I am also thinking I do not want to continue PDL therapy unless we know for sure it is the right thing to do. I guess I don't need to tell you what it feels like to put you baby through those surgeries and then have the dermatologist tell you with a smile "Yep! No results at all!" I get very bitter and am amazed that so many people here are nonetheless upbeat and have time to reply to others when they have so much to deal with themselves. I guess I'm just at the angry/worried-sick stage where you feel so confused/misunderstood and are at a loss of what to do next.
Now before we may schedule again with the dermatologist I have scheduled to see a new GP next week and see if anything comes out of that. Hopefully by then I will have some names of people the GP can refer us to!