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  #11  
Old 08-31-2006, 11:23 PM
aidanandjack
 
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jettmom,

Please email me at sskidmore@aspenmp.com. Our children seem to have the same type of thing. My son is now 23 months. He was born with birthmarks covering both legs, his chest and back (which were lighter and more blotchy) and a couple pws on his face. He is being treated with laser surgery at uci by dr. Nelson. (he is on this website as a contact) He was first diagnosed with CMTC. Then with PWS. They just aren't sure. But with all of the potential problems that come with CMTC, they are ruling this diagnosis out.

Please contact me so we can talk in more depth.

Take care,
Shannon
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  #12  
Old 09-01-2006, 05:48 AM
robolynn29 robolynn29 is offline
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My daughter was also born with extensive PWS on her face, chest, back, legs, arms,buttock and soles of her feet as well. She had an MRI and a MRA done at 1 week of age to rule out internal and she will see a opthamologist every 3 months to check for glaucoma. Her laser treatment starts in Nov as well in Houston at the Texas Children's Hospital. I am grateful that her PWS is pink and lacy in color. The only plan to treat her face, neck and chest. Does anyone else suggest treating the other parts of her body at an early age?

Robin
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  #13  
Old 09-07-2006, 04:01 PM
jettmom jettmom is offline
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Do you mind if I ask who your daughter is seeing at Texas Children's? Is it Dr. Levy?
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  #14  
Old 09-22-2006, 10:12 PM
AMY36
 
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Have I spoken to you yet? My Son just had his 8th surgery-PLEASE contact me ASAP. AMY
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