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! :)
Subscribe to:
Post Comments (Atom)
42 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. :(
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!
Heather, best of luck to you and your son! Let me know what they come up with. My thoughts are with you!
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
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!!!
banfay, my email is cgweber@bendbroadband.com if you would like to talk more.
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.
M Johnson, Thank you so much for the information!!! I'm glad your daughter is feeling better, what a scary thing!
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.
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!
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.
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!!!
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.
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!
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.
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.
We are just starting down the path of rumination with our 14 year old. She has undergone just about every test under the sun and still vomits/regurgitates all of her meals and especially drinks. This is the seventh week. She has been hospitalized twice for five days each time and been to an ER twice for dehydration. Tomorrow she is having an esophageal manometry test. She was first diagnosed with post viral gastroparesis which has somehow evolved into rumination. It has been incredibly frustrating for her. I'm so glad I found your blog because it is much less lonely when you hear that others are going through this and have had some success with biofeedback. We're at the very beginning of this. Thanks for sharing and please post updates if you have found anything else that works. Thank you!
Mom of four thank you for writing. I hope your daughter will be better soon, that sounds so scary! I'm sorry to say that I don't have any new info to share. My daughtr is 21 now and making her own life choices, and for now she has decided to just live with the rumination. I would definitly suggest seeing an occupational therapist. That is where our two most helpful techniques came from, which were diaphragmatic breathing and deep abdominal muscle massage. My thoughts are with you, best of luck!!!
Wow so glad I found this blog. Both my children ruminate my 6 year old more so than my daughter and it is really getting him down and it has also had an awful effect on his teeth. I am now about to embark on allergy testing and to start eliminating food from his diet but difficult to know where to start - dairy products or wheat? Do I stop tomatoe products, sugaryproducts - I know that these changes to his diet are not going to be very welcome Very difficult also when they have school dinners too, sleepovers and parties.
It's hard to say what to eliminate first. Allergy testing might help with that decision. Unfortunately, my daughter did an extensive elimination diet for a month and the rumination continued. I truly hope that it will help for your children though! For sleepovers (for my younger daughter who just has food allergies)we usually send Ian's frozen chicken nuggets which are gluten, soy, egg, and dairy free, and the mom can just pop them in the microwave. There are some decent gluten free pizzas out there too, but harder to find if you're avoiding dairy and tomato sauce. Best of luck to you!!! And I'd love to hear updates.
My 8 year old daughter has EE and now they are saying rumination syndrome, and I suspected the rumination was the cause of the EE - thank you for confirming that at least with your opinion! My doc is going to give me the name of an OT so fingers crossed it will work. I know your daughter has decided to live with the rumination - my question is - what does she do about the EE?
Thank you!
KD thank you for writing, and for your confirmation of my theory as well! My daughter was doing the budesonide slurry for ee, but she has stopped doing it now. It has been hard to get her to treat it because she is not symptomatic of the ee, and the slurry doesn't do anything for the rumination. The doctors have told her that it will get worse and her throat will slowly close up, but she has decided to ignore it for now (she is a typical 21 yr old, feeling invincible I think). Her OT was definitely more helpful to her for the rumination than any of the doctors have been. I hope that goes well for you! I would love to hear an update on your progress when you have a chance. Thanks!
Hi - I have found a speech therapist for my daughter but we haven't started yet. But last night I was talking to someone who was familiar with rumination with older people (she works with older people) and she said a counselor/psychiatrist could help! She said this one person she knew kept putting off going to a psychiatrist and trying everything else, but then she went and within 5 visits it went away! So just a thought. I'll let you know as we progress!
KD thank you so much for the info! I have read that in older patients without mental disabilities they had found it was sometimes being caused by a supressed childhood trauma. Sadly, my daughter said that if she had a repressed memory she didn't want to know about it. I will tell her your story though, maybe it will help. Best of luck to you!!! I hope to hear from you again.
I am was a healthy 55 year old female who somehow picked up rumination syndrome. I went to my primary care Dr., 2 different GI's, 2 different general surgeons (one finally took out my gall bladder which did nothing, but all the MD's wanted to make sure it wasn't something physical first. The GI's did a HIDA scan, CT scan, MRI, sonogram, colonoscopy, endoscopy. ugh. When I googled thy syndrome it looked like it was treated by psychiatrist and psychologist. So I checked my self into a mental health hospital for a couple weeks. the therapy was great, but they could not fix the rumination syndrome. I called 8 Psychiatrists and none of them had heard of it in a healthy adult and had no answers. The mayo clinic in Jacksonville FL has treated 64 cases of it this year (or last). After losing 40 some pounds I finally convinced my Primary Care Dr. to contact my insurance company (Mayo was out of my insurance network). Both psychiatrists wrote letters recommending I go to Mayo and there was no one locally who dealt with it. My best find was a nutritionist (also out of network) who worked with eating disorders as that (apparently) is how it is classified. While the Anorexia and Bulimic psychology treatment is different (I am starving, want to eat, and not concerned about my body type), she was helpful. small meals every couple of hours, using abdominal breathing, anxiety medications and even suggested the gum after the meal...it helps you to keep swallowing. She said to swallow what regurgitates if you can. Try to retrain your body that you do NOT want the food to come up.
I've pinned my hopes on Mayo as they treated it before. Their doctors work together (GI, nutritionist, psychiatrist, and psychologists) to come up with the best plan of attack for you. I just hope I don't starve to death before my insurance agrees to cover it.
S nelson thank you so much for sharing you story! It sounds like you are on pretty much the same path as us, although Mayo clinic is out of the question. My daughter has never had any weight loss with the rumination, but that may be because she has swallowed it back down right from the beginning. That doesn't seem to have helped with retraining her body, but it may have helped her retain her weight, so I guess we should be thankful for that. She is now 4 months pregnant and the pregnancy seems to be going well, again, good weight gain. I wish the very best for you! Please come back and tell us more as your story progresses. I would love to hear any more information or treatments that you may come up with.
Hello - I have posted before but for S Nelson, my daughter is 9 and she was ruminating 40-50x per day, swallowing it back pretty much every time. We went through a ton of testing too but finally the only thing that worked was the diaphragmatic breathing and gum. Now she hardly "spits up" at all - maybe 2-3x per week at most. I told her to stop what she is doing every single time and take 10 breaths. They may have taught you how to do it already but if not google it. Basically I have her put her hand on her belly and when she breathes in her belly should move out. We learned this originally by her laying flat on the floor with a tissue box (or something very light) on her belly. When the box went up as she took a breath in then we knew she was doing it right. So between that and gum chewing (which she doesn't do anymore) it cut it down very fast. We try to eat clean as well, and do probiotics and stuff like that just to keep her gut in check. Good luck, I hope the Mayo works for you. FoodAllergyMom - so glad to hear your daughter is doing well. God Bless.
Hello... your daughter is not alone. I started ruminating involuntarily in 1983 just after graduating from high school. I thought I had bad indigestion, and swigged down Mylanta and ate Digel tablets all summer and continued when I started college in the fall. I rechewed and swallowed back down anything that came up. I went to health services at my university and they referred me to a gastroenterologist in the neighborhood, who sent me for some testing-- which led him to the diagnosis of Pylorospasms and Delayed Gastric Emptying. The GI doc referred me to a psychologist who I saw for psychoanalysis for 13 years... all that while the problem got worse (um... lying on a couch after lunch??)... as I realized that if I "got rid of" the stuff that was coming back up, I felt a sense of relief, and I also started to lose weight. So I started expelling it-- and the frikken problem evolved into bulimia. I was fascinated. My childhood dream of eating whatever I wanted to and not gaining weight (in fact, LOSING weight) was awesome! Miraculously, the more I ate, the more weight I lost!!
Over the past several years I've wanted this to STOP. It cuts into my social life and productivity. I hold a great job with a Fortune 100 company, I have many friends, but I isolate because I'm so hungry but can't eat around other people-- I need to throw up immediately or else I'm in pain.
There's a lot more to the story, but mostly what I want to share is that over the past year I have filmed myself "vomiting". I have about 40 minutes of footage that I put into 2 separate video files. I finally showed my primary care doc TODAY. She feel awful that she didn't realize what I've been going through. She thought I was forcing myself to throw up. My psychiatrist believes this is under my control and has been pushing me for over 2 years to check myself into a residential treatment center for bulimia. I'm 5'5" 120 lbs so I'm not emaciated. My primary care thinks an eating disorder treatment program would actually be the WORST thing for me! There, I would be forced to eat normal meals--- when she thinks I should really start retraining my esophagus by eating very small amounts every 15-30 minutes. I do restrict during the day to prevent this from happening at work, but when I get home I am starving, and I over eat and then I regurgitate. That continues until sometimes 3am...
I get my calories from jellybeans or other candy throughout the day. It's not the calories that make me sick... it's VOLUME. A salad is worse than 1 cookie. A glass of water is worse than 2 Hershey Kisses. I'd be happy to share my video with you. It is very graphic, but I can't explain to the medical community how copious the quantity of undigested food is that I expel. After I do expel, I'm starving again, and the cycle perpetuates.
One thing that has been helpful for me to a point is Flotation Therapy-- Sensory Deprivation/Isolation Tank Flotation therapy. I have no option in that tank but to relax completely, which enables me to breath diaphragmatically... i know that I often feel like I can't breathe if there's food in me. I'm afraid to let my stomach go... My stomach muscles are also very well defined-- or hard and swollen?? PLEASE check into Flotation Therapy for some relief of the symptoms. Also, rigorous exercise seems to help too... playing high quality tennis or running relaxes my stomach so I can eat more without regurgitating.
Hi there, I was reading your blog post and I suffer from Human Rumination Syndrom , IBS and SIBO(Small Intestinal Bacterial Overgrowth) and chronic constipation. I first acccquire Human Rumination Syndrome, after a gastroscopy and over the last three years have gone through medical procedures, an eating disorder clinic to try to stop the HUman Ruminatioon Syndrome, as we were looking for any help we could find.After the clinic, it did help me to manage the syndrome physcally in some aspects, but still struggled with keeping all the food down physically. I also struggle with gainng the weight with the syndrome at the momentand have hard distened bloated tummy most days after eating or drinking. and thenight eating nad starving is also so tough to combat daily, feel you friend. Its beena long process of trying different outlets and points and I am currently with a a great dietician, gastrointerologist and counsellor, to try and help manage the rumination syndrome, which I do struggle with currently as well. I say this not to give a long list of symptoms but to relate in some wa hopefully and let others who also struggle know you are not alone, and although its sometimes the last thing we feel like, but to allow to be helped through it and know that you are not weaker in any way because of this condition in who you are. You are a beautiful human being.No buts. This rumination syndrome, can be so so confusing and I I think one of the main things God has been helping me work through is to be kind to myself, have compassion for myself and other, and to be okay with being misunderstood, and learn that its okay not everyone is going to understand and I dont have to explain myself the whole time to everyone. This rumination syndrome does not define my identity. I do not feel like /this onmany a day, sometimes I can be so wrapped up in the false shame tiredness pain and exhaustion , ,that I feel like its uite the opposite.But the truth is the truth and nothing no feeling or persons understanding can change that. God loves us all the way we are with all the sicknesses we have and He is able and willingn to help us heal and journey through this and bring good out of this. We hold onto the truth becuase on the goods days , we will realise the joy of the beauty compassion udnerstanding and fruit that it is to be brought through all of this and is being brought through. and on the bad days, it wil be the hope we clcing to, because the truth is constant , despite our fluctuating circumstances. The truth is we are loved, beautiful and marvellous creations and designs of God and we are all on a journey to wholeness, whether physically spiritually emotionally or mentally. Every single human being is on a journey to wholeness. It is unique to each of us. I am so thankful to all of you who have been vulnerable with sharing , its has really hleped me feel less alone in this condition. I have found discovered too that volume is something to be aware of and spacing liquids in between meals with suffienct time. I have also found the breathing to be hlepful and avoiding spicy foods, onions garlic(for gas and bloating) and dry foods when the rumination is particuarly bad, and not to have to many sharp foods(sounds contradictory I know) trying to avoid foods that can cut the throat if they come up has saved pain again and checking dental hygiene and sucking on sweets after wards help. Prayer loving support encouragement accountability advice and understanding havebeen really vital for my journey of recovery andknowing its also finding what works for you. My prayers with you and you are all amazing to keep at life and this struggle does not need to be in vain. I really believe, as already now, we can help each other and others.
I just realized that at some point I stopped responding to comments left here. I'm not sure if I was short on time or if it was just because I didn't feel I had anything new to contribute. I just want to say thank you to EVERYONE who has come here and told their stories. It looks like, as a community, we still don't have a lot of answers, but if you browse through all of these comments you will find some useful tidbits here and there. You will also find a lot of love, compassion, and understanding of what you are going through. When my daughter and I started this journey we felt completely isolated and alone, I don't feel that way anymore. Our GI had never even heard of Human Rumination Syndrome. We had to self diagnose from the internet, and at that time there was almost nothing to draw from. I think we found one article (the SAME article) posted in four different forums. That was it! We have come a long way. All of us are making a difference in the awareness of this condition. Please keep sharing your stories of your journeys, your victories and your defeats, your advice and your recommendations. Thank you all so much for joining us here!
Post a Comment