Saturday, September 24, 2011

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! :)

28 comments:

mom-b said...

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

FoodAllergyMom said...

Thank you! We've gotten to a point where a "cure" isn't even a consideration, now we are just searching for information.

Patti said...

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

FoodAllergyMom said...

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.

Edie said...

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.

FoodAllergyMom said...

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.

Crystal said...

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.

FoodAllergyMom said...

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!

Jenny said...

Have you ever tried Gastrocrom? Sometimes mastocytosis is confused for EE and works very well for this syndrome. All the best to you!

Anonymous said...

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

FoodAllergyMom said...

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. :(

Heather Rice said...

00?
We are currently going thru this with my 5 year old! He goes for a 24 hour study at the hospital on Tuesday. They think he has rumination syndrome, EE or gastroparesis (or any combo of the three.) We are so tired of not having answers that I am acutally welcoming a hospital stay!

FoodAllergyMom said...

Heather, best of luck to you and your son! Let me know what they come up with. My thoughts are with you!

banfay said...

sounds like my son - rumination and EE...I am told they are not connected, but hard for me to believe, as he has NO other symptoms that I can tell. 7+ years this has been going on - have you made any progress?? curious

FoodAllergyMom said...

Hi, thank you SO much for your comment. The doctors told me that the EE may be causing the regurgitation, but my theory was that the regurgitation was causing the EE...I just read an article that confirmed that. Sadly we have not made any progress. It's been 3 years now with no change. I have a new lead I am looking into, and if it goes anywhere I will absolutely post about it. Best of luck, my heart goes out to you!!!

FoodAllergyMom said...

banfay, my email is cgweber@bendbroadband.com if you would like to talk more.

M Johnson said...

Hi, My daughter ,age 11, has been vomitting daily for 66 days following an viral infection. 8 hospital stays in 2.5 months and she was just diagnosed with Rumination syndrome last week. The deep breathing relaxation has slowed the
Vomitting down , yet not stopped it completely. She has had only 2 10 minute training sessions while in the hospital last week. ,so she has not mastered it yet. . She starts with a behavior psychologist this Friday to work on the diaghpramatic breathing/deep breathing. I found the web sit of nationwide hospital in Columbus to be very helpful. You can down load the inpatient protocols they use . I hope this helps and good luck to your daughter.

FoodAllergyMom said...

M Johnson, Thank you so much for the information!!! I'm glad your daughter is feeling better, what a scary thing!

Otaku said...

Have you thought about acupuncture? They can do miracles if you can find the right acupuncturist. Dont go to a MD for acupuncture as many of them take a weekend course rather than a full 2 year training.

My husband had serious groin surgery about 20 years ago, and he was left in constant pain due to major nerves being severed in the fight to save his life. Western medicines "cure" was to write him ever stronger pain killer scripts. After a month of visits to the acupuncture treatments he was down to only using one pain killer a day, at night to help him sleep. After three months he was pain killer free.

I bet they can help your daughter with her syndrome. If you dont think the acupuncturist is helping your daughter, try a different one before washing your hands of this method. I also use this medical treatment, but dont use the same one as hubby as neither of us get relief from the others doc...yeah I know weirdy.

FoodAllergyMom said...

We have discussed acupunture, but of course she is petrified of needles. I will show your comment to her though. Sometimes it means more coming from strangers. Thank you!

Anonymous said...

I have this. I remember when I was little wondering if e eryone did it. I am now thinking maybe it has to do with hidden allergies? Bulimia has been suggested to be related to gluten sensitivity, at least anecdotally, which this progressed to for me during adolescence. Just keep her self esteem strong. The rumination is nothing compared to bulimia. Hopefully one day I will never do it again, but I don't hate myself for it, nor does my life revolve around it.

Oh also my brother was bulimic too, and I'm pretty sure it started the same way, because my parents always say "he always threw up when he was little, we would find throw up everywhere.". And he told me he was no fingers like me. My point is make her know how beautiful she is, please don't let her feel shame for this.

FoodAllergyMom said...

Oh my goodness! Thank you for sharing your story with me. I am feeling very lucky right now, she has never been bulimic and I don't think she ever would be. I'm sitting here now wondering how that DIDN'T happen. I've heard that bulimia can stem from a need to be in control, and my daughter is not only VERY much about being in control, she also has mild OCD. She also gained quite a bit of weight after the regurgitation started, which I thought was strange. I decided that maybe it had something to do with swallowing an reprocessing her food. I will show this to her. She is still eating wheat even though she tested positive for a wheat allergy. She did a month of eating only foods that she did not test allergic to and had no changes at all to her health, so she basically said screw it and eats whatever she wants now. Thank you again for stopping by and for leaving a comment! My thoughts are with you, I hope that you continue to feel better and better!!!

Anonymous said...

I have this. I remember when I was little wondering if e eryone did it. I am now thinking maybe it has to do with hidden allergies? Bulimia has been suggested to be related to gluten sensitivity, at least anecdotally, which this progressed to for me during adolescence. Just keep her self esteem strong. The rumination is nothing compared to bulimia. Hopefully one day I will never do it again, but I don't hate myself for it, nor does my life revolve around it.

Oh also my brother was bulimic too, and I'm pretty sure it started the same way, because my parents always say "he always threw up when he was little, we would find throw up everywhere.". And he told me he was no fingers like me. My point is make her know how beautiful she is, please don't let her feel shame for this.

Anonymous said...

Please try to get your daughter to stop eating foods she is allergic too. I have had so many issues and have just now figured it out. God I wish I had known when I was younger. What made you test? My parents unfortunately ignored the RS. I guess they were ignorant despite their intelligence. I've had ibs, bloating, itchy ears (way more annoying than it seems) depression, anxiety, bulimia, achy joints, stuffy nose, tired, slow thinking, burning urination with no uti, etc. Some I've had forever some I have gained over the years. Our bodies are not meant to continuously fight against something it feels is attacking it. Maybe try the whole 30 as an elimination diet if you haven't done one yet. Then add back possible allergens one at a time to see if she has an allergy that didn't show up during tests. I'm trying to live on the 30 day thing forever, aside from occasional cheats for holidays, etc. It has made a huge difference. Whatever you do, please try to get her to at least stop the wheat. Just because she sees no difference now, believe me it will make a huge difference later. Best wishes.

Anonymous said...

Please try to get your daughter to stop eating foods she is allergic too. I have had so many issues and have just now figured it out. God I wish I had known when I was younger. What made you test? My parents unfortunately ignored the RS. I guess they were ignorant despite their intelligence. I've had ibs, bloating, itchy ears (way more annoying than it seems) depression, anxiety, bulimia, achy joints, stuffy nose, tired, slow thinking, burning urination with no uti, etc. Some I've had forever some I have gained over the years. Our bodies are not meant to continuously fight against something it feels is attacking it. Maybe try the whole 30 as an elimination diet if you haven't done one yet. Then add back possible allergens one at a time to see if she has an allergy that didn't show up during tests. I'm trying to live on the 30 day thing forever, aside from occasional cheats for holidays, etc. It has made a huge difference. Whatever you do, please try to get her to at least stop the wheat. Just because she sees no difference now, believe me it will make a huge difference later. Best wishes.

Anonymous said...

FoodAllergyMom, did your daughter ever overcome the rummination syndrome. My son was diagnosed with this at Mayo and the breathing they suggested didn't help...going on 9 months now and looking for some hope for a cure. Please post any updates. Thank you!

FoodAllergyMom said...

She is still working on it, but we have progressed a little. My daughter's rumination would start as soon as she finished eating and continue until the next meal. Her physical therapist threw out a random suggestion that had never been tested, but it just popped into her head and she suggested that my daughter try it. as soon as my daughter is finished with a meal she puts a piece of gum in her mouth and chews it for a couple of hours. For some reason her body is tricked into thinking she is still eating and the food stays down. We don't know why this works and it may not work for everyone. Also, it is obviously not a "cure", but it's helping for now and we''ll take what we can get. Her physical therapist also said that her diaphragm is over developed and she needs to relax it. She is supposed to be doing deep massage on it, but she says it is incredibly painful and hasn't been doing it like she should. She did the diaphragmatic breathing and said it did help, but that it isn't something you can do continuously all day, every day, and as soon as she stopped the rumination would start again. Good luck to you and your Son, I wish the best for you! Aiso, I would like to ask the same of you, if you ever find ANYTHING out, please let me know.

FoodAllergyMom said...

I need to post a correction to my last response. Again, I don't know what any of this means, I just want to make sure I am providing correct information. It is not my daughter's diaphragm that is over developed (as a matter of fact, she told me that her diaphragm is under developed), it is her abdominal muscles that are over developed.