WOW! Thank you for so many specific hints. It's bittersweet knowing others have
similar experiences.

*We do give him 1 tsp of milk of magnesia each day that keeps his system moving.

*Suggesting spinning is interesting. He is very happy in a doorway bouncer I
think b/c it helps the reflux and it provides vestibular input.

*We just started giving him melatonin at night (.5 mg) and he has been sleeping
7-8 hours at night which has been a huge relief! If parents are rested, it's
easier to deal with his episodes during the day.

*We had him on the SCF/Breaking the Viscious Cycle diet for awhile. I'm a
believer. He sweat for 2 days as part of the detox process. I slowly added back
in foods until we were off it driven by his losing weight when on it. I will
consider starting him on it.

*I did call our GI's nurse/asst to ask if we are doing everything possible for
his reflux. They said yes. Hmmm? It was good, she returned my call during an
episode so heard him through the phone. She suggested we call neurology and ask
for some sort of medicine. She said sometimes kids take melatonin all day long.
As he hasn't had seizures, I'm not too knowledgeable yet on options like
neurontin. I haven't called until I can do more research first because I'd
rather remidiate his pain rather than drugging him.

If you think of anything else, let me know! You can keep us with us at
http://www.itsbrowning.blogspot.com