Is there anything terminal about this diagnosis? i don't mean to sound dense but i am just starting my research and have been afraid to ask this question. It seems there is such a grand variety of levels of SWS i am not sure what is at the end of the spectrum. Thanks
gail.
mom to baby jack 7 days old with extensive PWS.

Hi Gail,

I am glad to see you are axpanding your search options.

Hank

Gail:

I hope you don't mind, but I sent you a private email.

Glenda

Hi , I read your post from January and was wondering how Jack is doing. I have a 10 week old with PWS and poss. SWS & I have so many questions and fears and really would like to chat with someone who has been there.

Mona:

Please join us on the SWSC MSN Support Group. We have a chat session tonight at 9:00pm EST.

Go here to join:
http://groups.msn.com/Sturge-WeberSyndro...tySupport/

If you have any problems, let me know.

Hope to talk to you soon

Glenda