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  #1  
Old 07-30-2010, 05:27 PM
isavannyson09 isavannyson09 is offline
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Join Date: Jul 2010
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Default hello everyone!!

my name is holly, and my 8 year old daughter has a pws on more than 1/2 of her face, some on her neck, in her mouth/throat and covering her right ear. we have been going thru laser treatments since she was 2 1/2 years old, she had a total of 13 now, i can say we do see some lighting of it but not that much to say "wow it really works". i am getting so down on the laser treatments now, she knows what it is and cries and breaks my heart every time. i know it is something that needs to be done for her but i am so drained i sometimes find myself not answering the calls from her dermatoligist just so i dont have to hear them words.. is anyone else going thru the samething? i try my hardest to be strong for myself and her but it has been so many years and i just wish more could be done.. my new pedetrician mentioned something to me today about a new type of treatment and i was wondering if anyone has heard of it, the meds name is propanolol. i was looking for ao good site when i ran across this one.. i hope everyone is doing well and i look foward to getting to know some of you.. god bless you all and all of our angels!!!!
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Old 07-30-2010, 10:31 PM
missy missy is offline
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Hi and welcome!

Sounds like your daughter is one strong little girl!

Propanolol has been used for the treatment of hemangiomas and has shown some success. I have not heard of it being used for other vascular birthmarks, though. I haven't heard of it helping for PWS or AVM's.

Missy
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  #3  
Old 07-31-2010, 08:29 PM
isavannyson09 isavannyson09 is offline
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Well I know this might sound weird but what is the diffrence between hemangiomas and pws?? I have thought all these years it was considered the samething.. my daughter is 8 and her docs have never broke it down for me?? thanks
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