A DISTRESSED MUM! Pls help. - Vascular Birthmarks Foundation Forum
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Old 11-13-2009, 02:40 PM
henghweehwee henghweehwee is offline
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Join Date: Nov 2009
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Default A DISTRESSED MUM! Pls help.

Dear all,

All mums & dads would have been through what I went through. From the moment your child is born with a birthmark that is totally alien to you. To finding out the possible sickness and problems that may come with PWS. Now, my baby Lauren is almost one year old. She has extensive PWS on half of her right face, stretching from her forehead to her neck, right hand and back and also covering a portion of her left face. She has glaucoma on her right eye and did one surgery and been using eyedrops to maintain the pressure in the eye. Lauren had her MRI done when she was 2.5mths old and was cleared of SWS. Her developmental growth has been great and on track. She had 3 lasers so far only on the right side of her face (since our derm said to do it in phases) and slight improvements (the marks are almost gone on her forehead) can be seen BUT on our recent visit to our dermatologist, he said to stop for a few years after her 4th treatment cos it will be difficult to pin her down. We always suggested G.A on her but he was concerned since she is only a baby. And, he seems more emotional than us while treating her.
I know all of you out there may have been asked these questions millions of times but pls...help me cos I know how it feels like to be laughed at as I do have a big patch of birthmark on my entire left thigh. Can you imagine my baby girl having to go through up to 10 times of mocking of what I went through???!!!
I truly will appreciate if anyone of you out there can advice me on the followings:-

1. The truly best laser treatments to treat PWS
2. The top dermatologist in the world (I heard they are in America). A few names will be great!
3. The top ophthalmologist cos our doc suggested a 2nd surgery and yet she cannot be sure of the success rate since glaucoma is a life-time illness.

Mums and dads, I really hope to hear from you all soon.

Regards,
Sharon
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