My 16 month old daughter has PWS on her entire left arm. They are very light, barely visible under nomal condition, but become darker when my baby is cold or crying. Is this color changing common for PWS? Will they become darker when my baby grow up? I don't whether I should start laser treatment for the PWS on her arm since they are so light. And some people told me that arms normaly won't respond to laser. Is this true? Quite frustrating. Anybody could help?
I also notice some white spots spread in the middle of the PWS, which look like nevus anemicus caused by the constricted blood vessels. I heard this kind of marks caused by constricted vessels won't respond to laser, but how about PWS mixed with the white spots? do they still respond to laser?
Are you sure that you have the correct diagnosis? I had a doctor tell me that my daughter's CMTC was a PWS when she was initially born and then we continued to investigate and found out that wasn't the case. My daughter's affected limb is always colored but is much darker when she is cold or when she cries very hard. I don't know a lot about PWS so someone with more experience may have a better answer for you but I thought I would chime in with my experience.
I have PWS on the majority of my left arm, and it will vary with the temperatures. When it's cold, it will turn almost purple. In normal temperatures it is a medium red, and becomes bright red when very hot. If they're barely visible under normal conditions, I don't know if I would consider removing it. I wasn't a huge fan of mine growing up, but definitely didn't let it deter me or look at it in a negative fashion.
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