My son is 24.. has myotonic dystrophy type 1 (DM1) and autism...though considered high functioning. Lots of issues... Right now, he had an upper endoscopy in April and found he has the disease where the esophagus reacts to food like it is allergic, so he is on spray steriod of a type twice a day. He has swallowing issues and parallel to that, twice in the last four years he has suddenly dropped weight... 40 pounds in three months, changing nothing about how how he eats, which is a lot. Now he is in his third bout and I see his appetite increasing. Plan to weigh him tomorrow and see if loss part has mysteriously stopped as it mysteriously started...and now, third time, he has been losing but has a big appetite. . He is 5 10 and was 225, now 194 with NOTHING changing about his eating. So yeah, thinking dumping as I know the whole swallowing to rectum can be effected by DM1. With the added autism, the habits are hard to change. I don t know whether to keep watching what he eats and he sneaks to fillin what I don t know... or call the family Dr. We moved two years ago from all the Drs he had been seeing and only has a family doctor here and one for sleep studies and now a GI we saw once. He has extreme hypopnea and central apnea. He has tourrettes and yes, hands and feet effected by myotonia...and calves, abdomen, face, tongue, eyelids. Not sure if the fp takes this serious and wish we had a neurologist who specializes in DM1. Onset of symptoms are debatable. I adopted him at 2 and a half. His feet needed arches and he had ear infections often. So congenital form? not sure. Learning issues, language issues, tics, hands began to hurt. By 11, more physical symptoms showed up. Took until 16 to get diagnosis. He has cognitively slowly changed and physically the same. I dont know what to do about the eating and who to see? What if he is still losing? His comprehension is changing and he is hard to understand many times, most times when he talks. I feel I can t just let him eat and eat and eat...but if he is losing.... I don t know.