Vascular Birthmarks Foundation Forum - View Single Post - PWS/KTS - Infant - What to Expect your first visit
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Old 11-30-2012, 06:07 AM
kelmel kelmel is offline
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Join Date: Aug 2010
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Hi mikerd,

Thank you for sharing. I do not have personal experience with PWS on the body or limbs, however my son has had multiple treatments for his facial PWS.*

Sounds like you have asked all the right questions and have the best answers available from your doctor. I've had similar discussions with my son's dermatologist.*

This forum has been helpful to me in taking into consideration aspects of treatment that are more personal and individual in nature. Keeping in mind the risks of anesthesia, we decided to start treatments when he was an infant. His PWS covers half his face and felt it was best to treat aggressively to avoid as much of the psychological impact that a facial birthmark can have. Many of the heartfelt contributions here played a role in that decision. I may have come to a different conclusion had his stain been on an area of his body that could be covered with his clothing.*

The skin after treatment is tender and may swell. That has been our experience. *Being on my son's face, healing as been a relatively smooth process. I only offer him food that is easy to chew, not too messy to avoid wiping the face, and moisturize often. I'm trying to imagine how difficult it would be to keep an energetic crawler or toddler from aggravating the skin. That part of the process may be easier if you wait until she is old enough to understand that post op is a time to lay low and watch a lot of t.v. while covered in a coat of Aquaphor.*

All that being said, I would still make the appointment with the specialist and have things lined up so that you are not stuck on a waiting list when you feel that it is time to start treatment.*

Good luck and I hope this helped.*
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