I would love to know too, as this seems to be all that is available. Of course, there are the medications for the associated difficulties such as the hypothyroidism, growth hormone deficiency etc.
My son too has aho and hypothyroid and numerous calcifications throughout his body. It is just frustrating that Doctors do not know how to treat the aho symptoms such as the underdeveloped metha carpals. My son is 12 now and i managed to keep his weight low and with speech therapy he is getting better but what to do with his body image? He gets self conscious at this age and notices he does not look or feel like his peers. And there is no education out to inform the schools about this disease.