newborn baby boy with PWS on almost half face - Vascular Birthmarks Foundation Forum

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Old 07-11-2010, 02:50 PM
teardrop2 teardrop2 is offline
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Default newborn baby boy with PWS on almost half face
hello to all who we suffer together, each in his own way, the heavy load of birthmarks....

4 days ago, i gave birth to our second son, baby boy...we were so happy cause nothing seemed wrong...he seemed all healthy and normally looking boy...we did noticed red cheek, but we thought it is the cause of birth delivery....the nurse said everything was o.k. after sleeping and resting for some hours, i have seen our little baby again, and immediatelly i noticed the port wine stain. ofcourse i didnt know that that's it....i realised this after searching myself a lot on the internet during last days since i came from birth center. the pediatric doctor sent us to further researches, in order to hopefully deny Sturge-Webers syndrome.... so everything is still possible for us....one minute i cry and next minute i search all the possible sources to find help. but i have very low hope, cause if i understood right the PWS, it lasts all life..... i dont know about laser treatments, do they really help or it is only a slight change, but the stain remains....i wonder also when it is possible to start this laser treatments with such a little child...i come from Slovenia,Europe. Does anyone know which is for me the best place for laser treatments.... i wonder also, are PWS not removable with plastic kirurgy....? please share your information and experience with me, if they are similar....thank you so much!!!
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Old 07-11-2010, 10:47 PM
missy missy is offline
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Get in touch with Dr. Tombris about where to go at

http://birthmark.org/experts.php He will give you advice!!

Congratulations on your new baby!!!

Missy
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Old 07-14-2010, 02:39 AM
kaykay kaykay is offline
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congrats on the baby ! I hope you are able to access everything you need for your baby boy. Good luck
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Old 07-14-2010, 08:57 PM
fromhungary fromhungary is offline
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Hello.

I'm from Hungary, Szeged. My 22 month old doughter has PWS on her back, bottock, and leg. In Hungary, the doctors don't do laser treatment for younger then 5-7 years old children, because they don't want to do general anesthesia for babys if it is not neccesary.

Congratulations on your little boy. Try to forget PWS just for some minutes, and be happy together. I know adults, who live happy life with PWS, so don't worry so much.

Contact me if you want: editmakra@gmail.com

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