Tuesday, May 17, 2011

Ruminating

I have been away for a long while. Not just from writing, but from my life itself. I tell people it is as if someone hit the pause button in my life. This week the play button was pressed and I am back. THANK GOD!!!!

Since January, my oldest daughter has been sick, and in the hospital for 8 weeks within the past 3 months. My family has been tested and tried for all it was worth. The uncertainly of her health was exasperating, stressful and overwhelming. It all started with a flu. It seemed typical enough, but after 5 days of vomiting I had to take her in to the hospital, and that is where the drama began.

She was initially treated for dehydration, and then as the pain worsened she had her appendix removed. The appendix was not the problem, and so the vomiting and pain continued. I felt confident that the doctors would figure out her case, considering that Children's Hospital of Pittsburgh(CHP) is ranked in the top ten. I could not have been more wrong. Never in my life had I witnessed such incompetence. I am not referring to all her doctors, there were some amazing people that helped my daughter recover. Oddly, they were not the doctors assigned to her case, they were acting as advocates trying to help my daughter get better.

The gastroenterology department was awful. Every time I complained, I was told that what I was experiencing in dissatisfaction was "the nature of GI". Am I to assume that miscommunication, egoic behavior and poor follow up are all natural occurrences in GI departments? According to the staff at CHP, that is exactly the "nature of GI". On several occasions, testing and medications were started without ever mentioning to us what the tests or medications were for. They never gave us a clear diagnosis. The best they could do was send us to a psychiatrist who told us our daughter was doing this on purpose and was probably a bulimic. I am a family nurse practitioner, and never in my life have I heard of "catching" bulimia after a bout with influenza. According to the psychiatrist, Dr. Benhayon, that is exactly what her problem was. She was being rewarded with attention for her vomiting, so she was voluntarily behaving this way in order to keep herself in the hospital, and get more attention. He even told this to my daughter, who became enraged at his suggestion. All she wanted was to get better and go back to school. According to specialists at CHP, my daughter wanted a central line and a nasal jejunal (NJ) feeding tube as a way of attention seeking. Everything they said could not have been further from the truth.

Obviously at this point, I was not at all pleased by her doctors. The were contemptuous, egoic, self idolizing, incompetent doctors, who would rather misdiagnose than admit they had no clue what was wrong with her. They would rather over medicate, with the appearance of helping, when in fact they were doing harm. How does that fit into the Hippocratic oath? IT DOES NOT. The only positive thing Dr. David Keljo, her GI doctor at CHP, did was to refer me to Dr. Carlo De Lorenzo at Nationwide Children's Hospital in Columbus, Ohio. This referral came with a caveat, Dr. De Lorenzo has a 4 to 6 month waiting list for motility studies, which is what her brilliant doctors at CHP (note the sarcasm) thought she needed. They were comfortable keeping her on tube feedings for that time frame until she could be seen. If it were not for the help a very special person, we would have been left to deal with an NJ tube to feed our daughter for 4 to 6 months, before we could even figure out what was wrong with her. This amazing doctor made a simple phone call for us, (he was not in the GI department), and got us an appointment in 3 days! I cannot even begin to tell you how this event changed everything and led to a speedy recovery. I thank God that this doctor had my daughter's best interest at heart and not his ego.

Once arriving in Columbus, we saw Dr. Carlo De Lorenzo right away. Within 5 minutes, he had a diagnosis. He was certain, and said nothing else could be the cause at this point. Granted, he had all the testing that CHP had done to look at prior to seeing us, but he really did not need to look at them to diagnose her. He was the first doctor to ask my daughter to drink something so he could visual what happens to make her vomit. She had rumination syndrome: not gastroparesis, not bulimia and not some motility disorder that the doctors at CHP labeled her as having. He asked us if anyone had every brought up the diagnosis of rumination in the course of our hospitalizations. To no ones surprise the answer was, "no", I had never heard that word before.

There is no physiological process that will make someone vomit within seconds of eating, other than rumination syndrome. Dr. Carlo De Lorenzo was certain, with out any doubt, that this was her problem. She had vomited so much from influenza, and then from an appendectomy, that she had developed a tic that made her vomit. He took her off all her medications, except prevacid (to protect her throat from the acids when she vomits). He recommended an inpatient treatment program in order to cure her of ruminating. The only inpatient treatment program for rumination is at Nationwide Children's Hospital. THE ONLY ONE. This meant another wait to get into the program. We had to wait 8 weeks for her to admitted and treated.

The most disturbing part of my daughter's care was: no one at CHP brought up this diagnosis, they over medicated her, and never made any attempts at follow up. The only supposed help we were directed to, was behavioral health and the psychiatrist, Dr. Benhayon, who told us our daughter was bulimic and this was all in "her head". He suggested celexa for abdominal pain and a poor attempt at hypnosis. This is what pediatric psychiatry at CHP had to offer us. If we did not take the celexa, there was simply nothing they could do. They could not even offer us a female psychiatrist. The one female they offered, would not see her unless she took celexa or some other form of psychiatric drug.

In my professional and personal opinion, the care we received at CHP was the worst possible. Their only comments were: "this is the nature of GI" and "unless she takes these drugs there is nothing we can do". How is it possible for a highly ranked facility such as CHP to allow this kind of care to happen? Mysteriously, Dr. De Lorenzo had worked at CHP in the past, so it is difficult to imagine that the doctors at CHP had not heard of rumination. Believe me, it is something I wonder about all the time.

I am not writing this diatribe just to denigrate CHP, Dr. Keljo and Dr. Benhayon. I am writing it with hopes that it may help someone, when and if they google the words: gastroparesis or rumination. I was told that some children come into the inpatient treatment program at Nationwide, after being on TPN or tube feeds for over a year. These children suffer over a year or more because of misdiagnosis. The treatment for rumination is not rocket science. It is simply a program that focuses 24 hours a day for 2 weeks, on swallowing food and keeping it down. They learn simple techniques that retrain the body to stop vomiting. My daughter suffered much longer than she needed to because or poor medical care. I hope that someone might be helped by this story and find their way to better treatment.

Rumination Syndrome is not voluntary. The disorder has also commonly been attributed to a bout of illness, a period of stress in the individuals recent past, and to changes in medication. The overall process of rumination is involuntary. My daughter is now doing well and has returned to school, ballet lessons, and playing the piano. For months, she thought she was dying and that all doctors were awful. Her faith in good people and doctors has been restored, because of the wonderful staff at Nationwide Children's Hospital. Someday she will take this experience, and use it to make her a better doctor, nurse, or whatever she wants to become.

I have learned through out this process to always trust your instinct. Do not believe everything a doctor says the first time around. GET A SECOND OPINION! Unfortunately, I learned that nice patients and nice parents get ignored. Unless you speak up, make yourself heard, and insist they communicate with you: you will be ignored, and you or your family member will suffer. The saying, "the squeaky wheel gets the grease",is absolute truth. Thank God I started to squeak.


This is great reference material, and was written by the doctors who cared for my daughter.
http://journals.lww.com/jpgn/Fulltext/2011/04000/Severe_Pediatric_Rumination_Syndrome__Successful.9.aspx



Have you ever had a similar experience in a hospital or with doctors who don't really listen to what you have to say?

36 comments:

  1. AS you know, I have experience with this strange, yet, presumably diagnosable illness. I am SO glad your girlie is better - can't wait to see her in action! I do agree with you, however, I think you do have to speak up - be the "squeaky wheel" - not just accept certain circumstances, etc. Terrible that you experienced this in a CHILDREN'S hospital. So glad you had the experience and the personality to move it all forward - find out what was really wrong. Good advice for others.... truly.

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  2. Gosh, Joely, what a horrific experience for all of you. My husband and I had this experience very early on when our son was born a preemie. I can't begin to tell you how we had to fight with the doctors who tried him off his ventilator once only or never believed a word we said because we were only the parents! The day we took him home we knew we were saving his life; one of his nurses later told us that the feeling around the nursery was that we were going to be back with a dead baby! Unbelievable!

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  3. I've actually had mixed experiences. Like you, Linda, we had a baby in the NICU - technically a preemie but... mostly there for a kidney issue. To this day (he is 5), I find his Nephrologist amazing - remembers minute details of our lives and his issue - same with his Urologist who was just so on top of it all, etc. However, when the same child was admitted last year with breathing issues, I was appalled at the different diagnoses we received - Croup - asthma - an issue with his vocal cords (he has a raspy voice - and was hoarse due to all his coughing), then.... they released us with... well... basically no info. Bizarre. Like - take your sick child and go (like you experienced, Joely - and, granted, your issue was a bit tricky,but ... still... to so flippantly release kids to a life of misery because they "think" this might be the issue is messed up!!!). @ Linda - to so flippantly think - "oh well - the baby will die" is also just shocking. Good thing we're all "squeaky wheels", eh?

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  4. I am thrilled she is better, and back to her baseline normal self. My heart was broken for all of you when she fell sick. Your blog is so thoughtful and insigtful of a family crisis and gaining the strength to endure through this turmoil.
    While all you say is true about being the squeaky wheel, I can't help feeling frighten for those parents, children, women, friends, neighbors, wives, families that do not have a intelligent advocate by their side in times of medical, emotional or everyday crisis! There are many people who are misdiagnosed, mistreated and left to their own resources, that are left underminded and mislabeled and blamed for their problems whether it be medical, psychological or physical. You have been fortunate to be a strong, intelligent individual to perserver through this dark time but....what about those who don't, can't or won't.
    I have know of a women who was raped and refuse to press charges....her mother had said "are you sure you didn't lead him on?' This was a common thought from numerous people. I can assure you she was raped without needed an investigation or a trial. Why do I share such a story when you have blogged about a medical diagnosis gone bad. To me the message is the same here, somewhere someone is trying to disempower another inidividual because they are not sure themselves (somebody has to be blamed for something scary and out of our control.) Instead of saying I am sorry, I can not be sure, one is bullied, disempowered in believing that have caused this themselves.
    I think there is so much fear of the unknown and the ugly truths of this lifetime that it is somewhat human nature to blame the other party.
    With that being said, thank goodness you are an empowered strong individual and your daughter is now healthy and back to her life because of your inner strength.
    For those who are not, let those who continue are to advocate for those in need.
    Thank you for sharing your story and your friendship with me!

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  5. What a horrendous experience for all of you. I am truly sorry your daughter and your family had to go through this. I see you certainly have had your bouts with the tangle of testing and incompetence that is part of our medical system, just as you had the experience of a true diagnostician who was ultimately able to help.

    In my own experience, and that of friends, health care in this country is a bit of a hit or miss and everything in between. And that's without even going into the cost aspect, with or without insurance.

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  6. Big Little Wolf,
    Thank you for your comment. The health insurance part was awful(still getting bills). I guess I am a bit tainted at this point with all my experience in the health care industry. There is a lot of good going on in the hospitals, but it is overshadowed by the bad.

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  7. Joely,
    I am so excited that I found you, I believe that my daughter has rumination syndrome and I recently saw the info on the clininc in Colombus! I am excited that you got treatment for her and it worked. My daughter has been having this problem and I was wondering if we can communicate through email. I have been praying to find some information to help her. Please can you tell me more about the treatment for this. I am DESPERATE to find some help for her.
    Anything would be helpful!

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    1. Please send me your email and name and we can be in touch

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    2. Lisa,
      I have emailed you my address and phone number 3 times. Check your junk mail. I did not want to post your email on the site

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  8. My daughter spent several weeks at CHP when she was in sixth grade. She is a senior in high school now. She was admitted after recurring bouts of strep throat that seemed to cause her GI system to shut down. Since that time (all these years) she has experienced constant rumination of her food after meals. She has seen doctor after doctor. She has had scopes and tests. Finally, we gave up and just decided that this was something that we would learn to live with. Every time we did another round with another doctor all we got at the end was frustration and bills for the co-pays.

    Going to school became too stressful for her so we enrolled her in PA Cyber. She is a straight A student now, even with dual enrollment at Clarion University (she's taking her seventh and eighth college classes right now).

    Within seconds of eating, the food comes up, and she chews and swallows again and again and again. This lasts for several minutes to maybe an hour after meals.

    Right now, we don't even have a family doctor. I am SO SICK of paying for nothing! I don't know how many times she's been told that she is doing this on purpose. I have stopped trusting the medical profession at all.

    A few minutes ago I went upstairs to tell her that I am almost positive I've found out what is wrong with her. After I described what I had found on the wikipedia article and on this page, she started to cry. I said, "Are you sad?" And she said, "No, I just thought I was going to have to live with this for the rest of my life." We have been managing our lives around this horror for SIX YEARS.

    I think I'm in shock. And I don't know what to do from here. We don't even have a doctor, although we have health insurance. What do I do now?

    Please help us. My name is Laurie, and my email address is stephanpetersgirl@yahoo.com

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  9. My daughter spent several weeks at CHP when she was in sixth grade. She is a senior in high school now. She was admitted after recurring bouts of strep throat that seemed to cause her GI system to shut down. Since that time (all these years) she has experienced constant rumination of her food after meals. She has seen doctor after doctor. She has had scopes and tests. Finally, we gave up and just decided that this was something that we would learn to live with. Every time we did another round with another doctor all we got at the end was frustration and bills for the co-pays.

    Going to school became too stressful for her so we enrolled her in PA Cyber. She is a straight A student now, even with dual enrollment at Clarion University (she's taking her seventh and eighth college classes right now).

    Within seconds of eating, the food comes up, and she chews and swallows again and again and again. This lasts for several minutes to maybe an hour after meals.

    Right now, we don't even have a family doctor. I am SO SICK of paying for nothing! I don't know how many times she's been told that she is doing this on purpose. I have stopped trusting the medical profession at all.

    A few minutes ago I went upstairs to tell her that I am almost positive I've found out what is wrong with her. After I described what I had found on the wikipedia article and on this page, she started to cry. I said, "Are you sad?" And she said, "No, I just thought I was going to have to live with this for the rest of my life." We have been managing our lives around this horror for SIX YEARS.

    I think I'm in shock. And I don't know what to do from here. We don't even have a doctor, although we have health insurance. What do I do now?

    Please help us. My name is Laurie, and my email address is stephanpetersgirl@yahoo.com

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  10. I just wanted to post a quick update to say that Amanda has been doing so very well. In the last 40 days she has only had 4 or 5 episodes and they were just single incidents - not continuously coming up and reswallowing for 30-40 minutes like she was enduring over and over every day, and she has gone 18 WHOLE DAYS without a single episode and we are so happy!

    We feel that she has a second chance at life and we are so very, very thankful.

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  11. Hi Joely,
    My son was just diagnosed with rumination syndrome and of course there is no one locally who has the knowledge to treat this disorder. This disorder is making him very down and depressed and is really affecting his daily way of life. Is there any way I can talk to you. - Thanks

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  12. Send me your email via a post and I will contact you. I will not post your email.

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  13. Joely,
    Let me start by saying I am glad your daughter finally got diagosed and treated. My daughter started the same as yours with the flu and after 5 days was admitted to the hospital for dehydration. They then ran more test and said her gall bladder was not working and removed it. We were home only a day when it started again. At first they thought it was due to constipation from the pain meds. However, even after that she continued to vomit. She was losing weight rapidly and I was not going to sit by and watch my daughter wither away. We live in Columbus and were going through Nationwide's Childrens Hospital. It was frustrating going through test and eliminating other things because they will not confirm rumination until 6 to 8 weeks after the symptoms begin. Though finally diagnosed we are on a waiting list for her to start treatment October 8th. By the time she is admitted it will be 5 months from when all of this started. She has had an nj tube as well. I wish there was more information out there. We had so many people tellling us she was doing it on purpose and that I should make her keep stuff down. It was very frustrating. I was overcome by stress afer dealing with it for 2 months and took time off work. People just do not understand how this syndrome changes the patient as well as the whole families life. She is 15, very outgoing and active. She has remained pretty positive and upbeat through all this and has even cheered two varsity football games with her nj tube in. I thank God we live in Columbus and did not have to travel for diagnosis and treatment. Sorry for rambling but it is so good to know there is someone else that understands.

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    1. I am so thrilled your daughter is better. It definitely changes the family in every way. It is a test on the marriage and a test on how you can parent. I love love love that your daughter cheered with her tube in. It seems that all the kids I have talked to have been exactly that kind of kid(smart, confident, energetic, smart)..... ....so odd they are all alike. It has been a little over a year and finally I feel my daughter has returned to her normal self. Just this week her ballet teacher said she looked like a new dancer. She was so frail, weak, and inflexible for so long afterward.

      Thank you so much for sharing! It helps that we all try to get through this together because the medical community is lagging behind on this one.

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  14. This comment has been removed by a blog administrator.

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  15. I am going through this still after 9 months with my 14 year old daughter, we thought she was getting better but they are starting to slowly take her off her medication and she's started to vomit again, it's heartbreaking, she's devastated and worried she's got to go back into hospital. I wish I could wave a magic wand and make her better

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    1. I am interested to know what medication helped your daughter? we cant find anything to help ours?

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  16. My 14 year old daughter was diagnosed in July with rumination syndrome, she has been on a cocktail of drugs which did help, but now they are weaning her off them slowly and the condition has started again :-( we've been going through this hell for 9 months, I wish I could wave a magic wand and help her, it's heartbreaking watching her go through this.
    Our consultant is finding it difficult to find a rumination specialist in the uk, does anybody know of one?
    Please inbox me with any information melaniemason@ bigfoot.com
    Thanks and good luck to you all x

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  17. I know it's been a few years but my 6 year old just suddenly started doing this a year and a half ago and was diagnosed with rumination syndrome when barium swallow and endoscopy tests Came back normal. She was put on a prescription, Baclofen, to help her esophageal sphincter close more often and chews gum all throughout the day to train her body to keep the food down. It worked while taking it, but was only supposed to take 3 months to train the body to do it on it's own. She would keep having to be put on higher doses as it stopped working until she finally reached the max after a year and she was still ruminating constantly. They have tried several other medications while restricting her diet and nothing is working. They are looking into doing a Nissan fundoplication surgery, but it's a last resort. Sorry for that long thing- but my question is

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  18. Hi, Joely,

    I hope this message gets through to you, as I see this post is old. But what a relief to find it! I am desperate to get some help for my son who has had rumination syndrome for years - and misdiagnosed with reflux/GERD. What is the best way for us to communicate directly?

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  19. Joely,

    What a relief to find this blog. My 15 yr old son has suffered from rumination all of his life - and misdiagnosed with reflux/GERD. I am hoping you would be willing to share your insight and help, as it is proving very difficult for me to find information on how to best help him. Would you kindly let me know how we can communicate directly. With many thanks!

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  20. Replies
    1. Hello all and please let me begin by saying that I'm tearful right now reading your incredible stories and that there are other parents who are experiencing the same thing. The horror of this disease is causing my son to develop aspiration pneumonia (he's 2 1/2, began regurgitating at 9 months and has been diagnosed with Rumination for 6 months). All of the research is usually about treating adults and younger folks - I checked out the treatment center at Columbus and they recommend kids over 12 be referred there. I live in California and have Kaiser through my employer, and for the first year, our doctor told us he was just trying to get attention, prescribed acid reducers and that was it. We recently got a referral to a behaviorist who was completely unprofessional - but being part of the social services industry, I have knowledge of behavioral management and retraining techniques like the breathing exercises and such, but none of those really work with a toddler. I don't even know what to say right now - I'm so grateful to hear your stories of struggle and then success. We need help, we can't afford help, and nobody in our state seems to know what the hell they're doing.

      I am very frustrated and would be very grateful for any advice, direction or connection that you may offer. If there is no national organization or awareness group, I say we start one.

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    2. my reply post above is from colleen

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  21. I have this regurgitation of my food for several years now. I think it is Rumination syndrome though I'm not absolutely sure. It comes up without effort, and it may happen anywhere from very soon after swallowing or hours after. I'm not really sure how to stop it. And what's worse is I'm in Africa where there isn't a lot of knowledge on non-fatal illnesses. A doctor already told me I'm making things up about another problem. So I don't feel up to going to the hospital and having them tell me that I simply want attention or something similar.

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    1. sorry id did not respond. if you send me your email I can contact you. I wont publish your information.

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  22. Could you give me any advice on this,Joely?

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  23. It is 00:52 in the UK and I have just stumbled across this blog. It is sad, depressing, enraging but most of all empowering!
    In 2010 my 17 year old daughter started throwing up. Initially it was once every other week and it slowly increased, we thought that it was a bug. After about 6 weeks I was beginning to recognise a pattern and took her to the GP (General Practitioner) who diagnosed gastroenteritis. He prescribed an anti sickness drug and sent us on our way. By now most things that she was swallowing was coming back up. This was increasingly distressing and the anti sickness medication was having no effect so 48 hours later we were back in the doctor's surgery. He seemed rather nonplussed, changed the medication and told us to return in 2 weeks. She was determined that this would work for her. It did not and 48 hours later it took much convincing to get her back to the doctor. My thought was, if the expulsion of food and drink did not stop soon she would not survive 2 weeks. We needed to understand what we were dealing with and how to handle it. It was on the 3rd visit that a locum agreed that she needed further investigation at the hospital. She was admitted for gastroenteritis and spent 13 days being poked, prodded and encouraged to eat. by this time everything including water was coming up. In fact, food would stay down for 20 - 50 minutes but fluids returned in seconds. I was sick with worry! I spent the majority of my time at her bedside and the medical team visited to do her obs, top up the disposable sick bowls but no diagnosis. I trawled the net for anything that might shed some light, something that I could challenge the doctors with. Then one afternoon one of the nurses said something that led to a breakthrough. She described the way my daughter threw up as effortless. She was right. There was no retching, nothing projectile, no real offensive smell. Armed with this description I began a new internet search and came up with the term "rumination."
    I would like to say ......"and they all lived happily ever after," but that was just the beginning of a journey that has not yet ended. My daughter was discharged from hospital by a junior doctor who told her, "well you will have to go home and live with it." I will not share my response, there is not enough space. Suffice to say, he did much back tracking! It took a further 50 or so days for things to settle, we stopped counting after 45 days. In my ignorance I encouraged her to focus on more positive things and pray.
    I printed off an article on rumination and took it to our doctor who, not surprisingly politely dismissed it.
    For the past 3 years every time my daughter becomes anxious, upset or stressed the rumination kicks in again. Currently, she is battling with a bout that is close to a month long and it is wearing her down. I was very verbal just yesterday at the doctor's surgery but reading this blog has given me renewed strength. One does not need to have a medical degree to know that something is wrong and whereas the clinicians have the training, in partnership with the patient and the family/friends, appropriate, holistic answers could be reached with much less trauma.
    Bless you all

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    1. Your daughter has been through so much. Please feel to contact me. If I could be of any other help I am available. I have not gotten any comments because they were being rerouted to my spam so sorry if I seemed out of touch.

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    2. No worries, it was a holiday.  The good , I mean Great news is that the corner turned on thanksgiving. He ate a TON, even though I advised against it. Kept it down until losing about 25% late at night. Depression was up and down . Then he had a nice weekend spending a lot of time with family, and the food is finally staying down since Friday night. Says he has to fight off some nausea here and there, but it is really looking good. I can't thank you enough. Although we were leaning towards rumination,  it was your story about your daughter and talking on the phone with you that really convinced me. In the end it was a matter of my son really buying in to what was happening and allowing himself to fix it.  I guess even though almost 3 weeks seemed like a lifetime , I know that we are lucky it didn't go on much longer like with your daughter. Thanks again, and if I ever meet someone who has this situation in their life, maybe I can help them the way you helped us. Feel free to post this on your site.

      Bruce
      ▶ Show quoted text

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    3. No worries, it was a holiday.  The good , I mean Great news is that the corner turned on thanksgiving. He ate a TON, even though I advised against it. Kept it down until losing about 25% late at night. Depression was up and down . Then he had a nice weekend spending a lot of time with family, and the food is finally staying down since Friday night. Says he has to fight off some nausea here and there, but it is really looking good. I can't thank you enough. Although we were leaning towards rumination,  it was your story about your daughter and talking on the phone with you that really convinced me. In the end it was a matter of my son really buying in to what was happening and allowing himself to fix it.  I guess even though almost 3 weeks seemed like a lifetime , I know that we are lucky it didn't go on much longer like with your daughter. Thanks again, and if I ever meet someone who has this situation in their life, maybe I can help them the way you helped us. Feel free to post this on your site.

      Bruce
      ▶ Show quoted text

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  24. Hi there everyone, I am 18 years old, from the UK and currently at University. When I was 10 years old my mother passed away after a long battle with breast cancer. Something which I believe I never grieved or mourned about properly after her death and in a way had to deal with myself. Roughly 9 months after her death I was going on the trip of a life time to New York with my dad but the day before I began having my first episode (which I now know is) Rumination Syndrome. I did not take any notice of it initially and just put it down to having the flu but as the years went on i had repeated incidences until i was 12 years old where i had a month where i had a constant cycle of vomiting then being fine for a few days then getting very anxious and vomiting again while I ate. Prior to this awful period, I had already seen several doctors and psychologists who were unable to understand what was wrong with me. But quickly me and my father realised it was down to a psychological issue. By the time I was 15-16 I had seen at least 5-6 physicians about my problem but by this point I had managed to deal with the issue myself through breathing exercises whilst eating and generally worrying less about the issue. Through this time I knew I had an eating disorder and I thought it was Bulimia although my dad never said to me he thought that that was what it was. I recently have been doing some thinking after i told some close friends while I was drunk on a night out that I bulimia since i was 10 and since then I have been doing some research to make sure if that was the actual case, because in actual fact I hadn't really done enough research to find out what it was. Today I googled a bit on the internet and rumination syndrome seems to match the exact symptoms I had and it is such a relief after 8 years to finally know what is wrong with you. I believe that rumination syndrome in my case was caused by the trauma of my mothers death especially since my first episode of it came several months after which is what commonly occurs. Thankfully now I am in control of it and very rarely affects me also I read that physical damage due to the syndrome is rare or none at all which is also a great relief.

    I am very pleased to have found this blog where I know there are other people in the world with the same problem as me. Hopefully in the future there will be more awareness about this issue as in my case and I'm sure in many other cases it can be left undiagnosed for many years.

    I just wanted to leave this message to people to let them know that you can improve and it is not something which will take over your life, in fact in my case i didn't even see a specialist who has ever diagnosed me or even treated me, I did it myself. I'm not saying that that's what you should do but I managed to overcome it by myself.

    Gio


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    1. My adult son had suffered for nearly 20 years since he was 14 with what they call refractory OCD. It is torture. No one can see the treatment like g-tube, just his repetitive behavior that seems odd. It is harnessing to se people in general brush him off, ignore and say he's lazy or crazy when he suffers so from something like this. I just wish there as more sympathy in this world fortunes kind of illnesses.

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  25. Hello,
    Your story is so sad but I am very happy you got your daughter the right medical help. My son (13, with autism) is currently very ill with Rumination Syndrome that began in 2012 after the diagnosis no real help has been given except some spicologycal advice, I can find someone that can treat him in the UK, my son is more than 20kg under his weight, vomits daily most of his meals, it is horrible and extreamly sad for him and the whole family...the doctors keep putting it like it's all on his head issue, they want to give him antispicotic drugs! How is that going to break the habit? Does that hospital that saw your daughter accept international patients? I am desperate

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