It's just as heartbreaking and difficult...sometimes more so...than dealing with TSC.
The ONLY reason we chose to have a diagnosis is so that we can access help for W. W received PUF during the pre-school and kindergarten years which provided extra assistance at school as well as OT and psych services. But now that he is schoolage, there is no funding or support available. Also, in the past, we utilized FSCD for respite care.
As for meds, this is a very difficult and personal choice. We had been utilizing a GFCF, dye free, preservative free, aspartame & sugar free diet, homeotoxicology, behavioral therapy, OT, Social Skills classes and chiropractic care. Eventually we added meds to the equation as the other methods just weren't enough. It was one of the toughest decisions we have ever made. Came with many tears and questions and doubts and now 5yrs later, it's still a work in progress.
Our bright, funny, compassionate, energetic boy is a wonder. I'm often wondering what he will come up with next!