I'm not sure if he works with children, but if I could see anyone about this condition University of California, Los Angeles ... Dr Joshua Prager would be my first choice. He is leading in research world-wide, but is not bound by study restraints and is customizing treatments for individuals.

I can't even imagine being a child and having this disease, or being a parent of a child with this condition. God bless you both and I wish you the best!