Lisette has started a Facebook Page as it is easier for some of us to stay in contact, we are looking for more information about SGS and people with it to join us and pool our information. Please join us and share. https://www.facebook.com/groups/1391983947709314/

Excited for this! Have been looking for others with SGS for 4 1/2 yrs!

I hope you join our FB group if not, I would love to talk to you hear. Finding people is difficult and navigating some of the sites can be difficult. I adopted my now almost 7 year old daughter who have Dx with SGS, and we have many issues and have overcome some issues, it is great to have someone else to talk to so you don't feel so alone getting thru some of the difficulties. Can't wait to hear more about your child!!!

I did go on fb and ask to join. I have been in tears since I read the e-mail this morning! My son Adin is 5 in July, overcoming is what we do best over here! We struggle to find Drs. Who are willing to understand the uniqueness of this syndrome. Finding out that you have been in touch with Dr. Shprintzen is amazing! I'm amazed to find another person in the states as well... The overwhelming sense of "being the only one" was a tough pill to swallow. Can't wait to chat more!

I am on FB too https://www.facebook.com/ginger.macgowan?fref=ts If you want to friend me The othe people on the page are in Denmark mostly and one in France and just added one in Germany yesterday. It is very hard to find any one who understand this syndrome and will look at the child as a "whole". My daughter has had 2 cranio surgeries also, How is your son doing?