Wouldn't it be easier to be able to do a pin prick test at a certain time each day to reveal levels of certain hormones. I pray a medical or biology student in need of a project is reading this message. Our kids need help. As a rare disorder, the big pharmaceutical companies have no vested financial interest in this research. I also watch with hope that the replacement gene research being done for diabetics makes progress. Maybe its applications could be transferred. I also hope this isn't wishful thinking. Peg D.