PWS, Seattle area - Vascular Birthmarks Foundation Forum
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  #1  
Old 10-15-2013, 08:11 PM
wa_mom wa_mom is offline
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Join Date: Oct 2013
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Default PWS, Seattle area

Hello!

I am a mother of a 2-weeks old baby Kate with a port wine stain covering her right part of her scalp, forehead, eyelid, neck and temple. We have just started looking for treatment options, and of course this all is so overwhelming in the beginning. We would love to connect with parents of kids with PWS for support and to share experience of treating PWS in WA. Please drop me a message if you would like to do so too.
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  #2  
Old 10-16-2013, 01:50 PM
missy missy is offline
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Hi and welcome!

Other parents will be in soon ... hang in there!

Anything VBF can do to help you out, please let us know.

Missy
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  #3  
Old 10-17-2013, 02:27 AM
Lorna Lorna is offline
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Default Pediatric Dermatologist

Our little girl has a PWS that covers half of her nose, forehead & scalp. We have been seeing Dr Robin Hornung at The Everett Clinic. She is also doing her monthly laser treatments at Bellevue Children's. We are very pleased with the care we are receiving & are noticing great results! She is 8 months old & her fifth treatment is tomorrow. People are commenting that they can hardly see it anymore!
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Old 12-09-2013, 03:05 PM
ashleymarie4 ashleymarie4 is offline
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I also live in Seattle, ballard area, and have a 2 year old son with a pws on the right side of his face. We have gone to Seattle children's from the beginning for eye checks and laser treatment. We see Dr Robert Sidbury and he is amazing! We have had 8 laser treatments and the difference is remarkable. Please let me know if you have any questions! Post here or message me...I am happy to help provide info!
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  #5  
Old 02-01-2014, 10:21 AM
rebamarvin rebamarvin is offline
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My son has had 2 checks for glaucoma, both time when he was awake. First time they put a metal thingy to open his eyes (he was less than 1 day old!!) The second time, i breastfed him and he opened his eyes long enough for the doctor to see them. I am not aware that they have tobe under GA for the check up.
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