you might also want to look into the Metabolic Formula Program. try contacting the Division of medical genetics director email@example.com. for information about the program i’am sure she would be happy to here from more people with this situation, especially children. make sure you mention the program name. Metabolic Formula Program. they are excepting applications now deadline is june 30th. if she can’t help, i’am sure she knows were you can turn to.