Our 3 year old daughter has a significant facial port wine stain, and we are looking for VBeam laser treatment in London and the south east which can be done under anaesthetic. We did do some treatments when she was a baby but stopped when she became more conscious of the procedure and the place we went to is unable to do anaesthetic. We are also expats so will need to do this privately not on the NHS, and Great Ormond Street have a backlog so we have been unable to get an appointment there.
Any similar experiences that can be shared would be hugely welcomed.
Written by
PWSParent
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Hello PWSParent and welcome to the Changing Faces online community! Thank you for posting your story here. Other members of the forum will certainly agree that seeking the right help for your child when having a visible difference can be a long and often challenging process. Hopefully sharing your experiences with the community and reading about other people’s experiences will be helpful even if it doesn’t provide you with any specific answers.
That being said we try not to talk about particular named doctors, clinics, etc. in the forum following the HealthUnlocked rules that would not allow the names of specific commercial organisations to be posted here. Other than that, it is okay if people want to ask questions and talk about their own experiences or give their opinions as long as it's clear that it's given as a personal experience and isn't recommending anyone or anything specific. Hope that makes sense and please continue to share your thoughts and journey here.
I hope you find this community a safe and welcoming space to access some support and connection with the members on here.
I also have a PWS too. I have had treatments (privately funded by NHS) in Oxfordshire however that was as an adult. I am not sure if the clinic I went to would treat children. I can give you the details privately (e.g. not on this forum as it’s not allowed) if you like? Contact me via my private messages.
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