Lili,
There are many sites parents have created that can (hopefully) asist you in your request for information. My 5 year old son has this "thing" and we continue to fight and look for treatments continuously. We have set up a site for him at jjsmiracle.com. In it, you can find what we have done to date as well as links with information and other children. Sites are updated regularly and we all share what we have.
Hope this helps
Jim
jjsdad