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Old 03-08-2012, 07:30 PM
chuli chuli is offline
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Join Date: Mar 2012
Posts: 7
Default my Baby girl

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.
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.

Of the posts I have read, no one has really talked about whether they have SWS or Glaucoma. I want to know how it is. I don't know anyone with this conditions, and no one in the family has it. Any answers will help, thanks!!
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Old 03-08-2012, 11:51 PM
missy missy is offline
Join Date: Apr 2006
Posts: 1,794

Hi and welcome!

I'll see if I can get someone to answer this post for you, but it may take a couple of days. Hang in there!

When is your daughter's MRI?

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Old 03-09-2012, 02:41 PM
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swsc swsc is offline
Join Date: Feb 2004
Posts: 81

chuli - My name is Glenda and I'm a member of the VBF and the Sturge-Weber Syndrome Community chapter. I have a grandson with SWS. I will try to email you through this board, but you can contact me at:
swsmailbox @excite. com (no spaces). I hope to talk to you soon.
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Old 03-09-2012, 03:29 PM
chuli chuli is offline
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Join Date: Mar 2012
Posts: 7

Her MRI is for this tuesday the 13, she also has a very light mongolian spot in her right side of the forehead that goes into the scalp. Don't know how this would affect her. I cant wait for this to be done and know whether she has SWS. She also already has a little speech delay. Thanks, I will wait patiently.
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