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! :)
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11 comments:
wow, been thinking about you guys. I bet you will start to get some hits and hopefully some help. What a crummy way to live. i hope that through this post you can find out something that will help. Ick
Thank you! We've gotten to a point where a "cure" isn't even a consideration, now we are just searching for information.
Hi, I am new to your blog. I was looking for a sugar cookie recipe. I have an autistic son that has several food intolerances. I wanted a cookie dough you can roll out and he can cut and help decorate. I think I may have found it on your blog and want to thank you. I have to say all the pictures of what you have made make me really hungry. If I lived near you I'd be looking for an invite to dinner.
On a more serious note. I read your last post and came across some information regarding trials that have been promising regarding your daughters diagnosis. Here is the link and I hope it will be helpful.http://www.cincinnatichildrens.org/health/subscribe/ped-insights/08-07/ee-treatment.htm Patti
Hi Patti. Thank you so much for high praise, if you are ever in Bend OR you have a standing invite to dinner! Thank you too for the link. We are not actually addressing Amanda's EE right now because she has no symptoms. We are focusing all of our energy and resources on her Human Rumination Syndrome, we are hopeful that when we get that under control the EE will go away.
Have you looked into the Gut and Psychology Syndrome Diet? Dr Natasha Campbell McBride. www.gaps.me Both of my boys had issues with reflux and that is one of the first things that has disappeared since we went on this new protocol. I know reflux is not the same thing as what your dc deals with. But she does say in one of her conference workshops that in issues where the stomach is staying open it is due to pathogenic bacteria that have made a home there and caused the muscle to become inflamed and thus not close properly. She says if you balance out the gut, which includes repopulating with good bacteria, that the inflammation will end and the symptoms will too.
Thank you for the information Edie! I looked at the site and it sounds amazing, but I don't think Amanda is emotionally ready to dive into something so extreme. I will definitely show it to her though.
My sister's son has EE. He has been working with an occupational therapist for several years on helping him keep food down. They have had great success. He even has a sensory disorder so the texture of the food was even an issue. I believe she was refered from CHKD - Children's Hospital Kings Daughters - Norfolk, VA to the OT. Perhaps a call to them can give you some suggestions for your area.
Crystal thank you for the info. I have been thinking about contacting some hospitals for advice. The Mayo Clinic seems to know something about it too. I really appreciate any and all input I have been getting!
Have you ever tried Gastrocrom? Sometimes mastocytosis is confused for EE and works very well for this syndrome. All the best to you!
HI -
My son has EE, age 7 now.
When he was younger, one of his EE symptoms was what you are describing with your daughter. When he modified certain foods, this stopped entirely. It wasn't the cause of the EE for us, but a symptom of it. He still has EE, but he never "ruminates" now.
Lynn
Thank you, I will pass this along to my daughter. She is not living at home anymore, and unfortunately I don't have much control over what she eats. I do know that she is eating things she shouldn't. :(
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