We recently had a newborn baby a few days ago and I wanted to some advice and support with all the new information we are finding out. Our little angel was born with a PWS on her right cheeck, under her nose and a little patch above the eye.
As with the internet these days, I am starting to get really concerned with everything spiralling out of control. We are working hard to get an appointment with a top doctor in the next two weeks. We are meeting the eye doc on Wednesday.
We have a few basic questions?
What are the steps to rule out Sturge Weber?
What is the best laser for Port Wine removal?
How early can you start the treatments?
Are there any behaviours that she has right now to know she has Sturge Weber?
Please write back if you have any feedback. We are so worried and would love to hear from you.