2 month old baby with large PWS - Vascular Birthmarks Foundation Forum
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Old 05-03-2012, 01:34 AM
swaltjen swaltjen is offline
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Join Date: May 2011
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Alison, it does get darker when he cries, but seems to be lighter when he's in a warm bath. Last year when he was diagnosed there were slight difference in the measurement of his legs. His affected leg was longer but smaller in circumference than his non-affected leg. It does appear to me (and the pedi) that there really isn't a difference in length or circumference at this time. I just feel like all symptoms point to CMTC.

I remember reading somewhere that some symptoms of CMTC include frontal bossing and wide set eyes. Have you come across that in any of your research/reading. I can't seem to find it anywhere...anyway, my guy's forehead protrudes (in my opinion), but the pedi says its not frontal bossing. His eyes are definitely wide set though. He recently got glasses and the pediatric ophthalmologist mentioned that his eyes were set wide...

Oh well, I'll be scheduling an appointment for him soon... I think we are going to try and see a different doctor. My husband and I feel uncomfortable going back to the docs we saw last year as they pushed laser treatments and we declined.

Thanks for letting me vent!

Sarah
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