Hi Jonathan Firstly I would like to say congratulations on your new beautiful baby girl! Thank you for your lovely reply and your good advice. I really appreciate your help.
We are in the UK we are on the Essex/London border. I have emailed the support group and I am just waiting on a reply now. I hope they can put us in touch with someone that can help us. It would be great to get seen by someone that actually knows about birthmarks as my gp seems to know nothing. I'm so annoyed that we were never told anything about Sturge Weber so my daughter hasn't been tested yet. All the second gp said basically was your daughter has a pws but shes healthy get on with it! And she is supposed to be a dermatologist and should know a bit more about pws then the regular gp.
I too have been looking on the net at before and after pics and have seen some great results so am feeling more positive about things today
I would also like to wish you luck with your little ones treatment. I'm sure it will all go great for you. Will you be posting pictures of her once you start treatment? As I would love to see how she gets on.
Anyway I must go now but Thank you again