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chuli 03-09-2012 01:44 PM

pws questions
Hi,my baby girl (now 2yrs old) was diagnosed with port wine stains and Mongolian spots. She also has glaucoma and underwent trabeculectomy surgery to correct it. (dont know if she will need more)
I don't know how common it is but as she is getting older the port wine stains are showing more. When she was born she had normal skin except for the Mongolian spots covering like 75% of her body, and now the bigger she gets, the more red she's developing throughout her body. She has a red nose, and some pink marks above her eyebrows, hands(right hand more) and feet. She will undergo an MRI to determine is she has SWS. Her right side is also a little ticker than her left which is a sign of KT. Her skin changes from light pink to purple depending on her temperature.

Of the posts I have read, no one has really talked about whether they or their kids have SWS or Glaucoma. I want to know how anyone else is coping. I don't know anyone with this conditions, and no one in the family has it. Any answers will help, thanks!!

P.S. I feel totally alone, even though I know there are many people out there with this.

chuli 03-26-2012 01:10 PM

Can someone refer me to a pediatric neurologist that is not from Columbia-Presbyterian, I want to seek a 2nd opinion about my daughter's MRI. this doc doesn't really know what the findings are. Every week comes up with something different.

missy 03-26-2012 08:54 PM

I'm not sure where you're located. Columbia Presbyterian is where? We might be able to find someone to give you a second opinion. Have you written to Dr Comi?


chuli 03-27-2012 12:54 PM

I'm in New York City, no I haven't written to Dr. Comi. Thanks!!

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