Human Rumination Syndrome

This isn't really a formal post. It has just occured to me that I need help and information, and I have this forum to put my plea out into the world wide web, and I have found myself with a few minutes to write. I posted a while back about my daughter Amanda and her diagnoses of Eosinophilic Esophagitis. We now think the EE is actually a reaction to the fact that she is constantly regurgitating. Every single day she gets up and has something to eat, then as soon as she is done eating, and continuously for the rest of the day, her food comes back up one small mouthful at a time. She simply swallows it back down and goes about her day, it is so constant that there really is no other option. Also, every time she eats, her stomach gets hard and swollen, but she showes no outward signs of having gas. We finally ended up at a GI who looked at her multitude of tests for her tummy troubles and said "I've been doing this for 15 years and I've never seen this before, I'm sorry, I don't know what to tell you". Huh??? We need answers!!! So, we went online and started Googling all of her symptoms, and WE found the answer. She has Human Rumination Syndrome. Unfortunately it is a "syndrome" and not a disease, so no pill or quick fix. We found a biofeedback breathing technique here http://www.healingbridge.com/articles/articles-biofeedback.htm that actually seems to help keep her food down but it's almost impossible to do as constantly as she needs to and still live a normal life, and when I tried to make an appointment with them they said they don't deal in her condition and refused us.
I doubt that any of my regular readers know anything about this condition, but again it is my hope that by putting this on the internet maybe someone out there who is just searching key words will see this and have some information, or input, or ANYTHING. It can't hurt to try. Right? I welcome any comments, thoughts, suggestions, and stories. Thank you!
For my regular readers, I really do plan to start posting more recipes again soon...I really do! :)