What can i do to help my daughter who has tuberous sclerosis?

No cure: It's a genetic disease. Only supportive treatment available, no cure.

Great question!: Keep copies of all of your child's medical, dental, educational and therapeutic records in a well-organized binder, with the oldest info in the back of each section to the newest in front. Take this with you to all appointments, er visits, iep's and therapy sessions. Join tsalliance.Org and educate yourself on your daughter's symptoms; that helps you partner with her providers effectively.

Join tsalliance.org: Collect & file all medical , educational & therapy records in a notebook or electronically; list all meds with doses, dates, effects & side effects. She needs evals & treatment by a pediatric ophthalmologist, neurologist, developmental/behavioral pediatrician, neuropsychologist. & school district's child find (3 & >) or early intervention teams (0-3) for therapy/ special ed services asap.