Would like to talk to other people with rumination syndrome

Hello @teacuptink

I see that you are relatively new to Connect, so welcome! I can certainly understand your concern for your daughter.
We all want our children to be as productive and happy as possible and I appreciate you reaching out and looking for help.

As you mentioned that your daughter has been diagnosed with rumination syndrome, I'm assuming that she has seen a mental health professional. Is that the case? If so, was she prescribed any medication for this syndrome?

Is her "unsteady life" (that you mentioned) one where she has a hard time being employed or making and keeping friends?

I’m reaching out on this old thread as well because my son has been diagnosed with Rumination syndrome, or that’s what his specialists (4) think it is. They have tried unsuccessfully to get him into Mayo for treatment options & a clear diagnosis with no luck so trying to reach out to others that have it for possible treatment options. He is 19, and has dealt with food getting stuck for as long as I can remember. He had his throat stretched 2 years because it was discovered his esophagus was narrow. Approximately 8 months later it needed stretched again. Shortly after the 2nd one he started “spitting” up everything he ate or drank. I say
It this was because he’s really not throwing up, it just comes back up 10-15 minutes later and he spits it out. This goes on for about an hour and then he’s fine- but starving. He had a scope done, along with every test imaginable and so far they can’t figure out what is wrong. He’s seen 4 specialists including one at U of I hospital with no luck. Besides them, he has also seen a therapist to learn diaphragmatic breathing & hypnosis. They have said there is nothing they can help with, this is medical. Like I said, attempts to get him into Mayo was turned down. Anyone with any other insight of suggestions?

My daughter is 15 and got diagnosed with rumination syndrome in May, 2022. She has celiac disease and gastroparesis and the doctors think those conditions brought on the rumination. She is on an NJ tube with nothing by mouth. She was hospitalized twice because of the intense weight loss, once for a week and then a few months later for a month. Her rumination syndrome is extremely intense that before she was on a feeding tube and she was eating fully by mouth she would regurgitate probably at least 200 times a day, if not more. She is doing diaphragmatic breathing but it is not helping her that much and even still she is ruminating up air and stomach acid constantly which is because even though her feeding tube feeds into her intestine, her body is still trying to throw the formula up and get rid of it. Since it can’t, it throws up what is in the stomach, which is the air and acid. Nothing seems to work for her and she can’t hold down anything. Has anyone recovered from this illness or used other treatments besides diaphragmatic breathing, like hypnosis or the medicine Baclofen?

Hello @rumination and welcome to Mayo Clinic Connect. I am so sorry your daughter is going through this. As a mother, this has to be tremendously challenging as well.

I found an existing discussion with members who may be able to help support you and your daughter go through this journey. Member @help123 actually shared last in this discussion that her son had been diagnosed. I am hoping the pair of you can connect. You can see I moved your post here:
- Would like to talk to other people with rumination syndrome: https://connect.mayoclinic.org/discussion/would-like-to-talk-to-other-people-with-rumination-syndrome/

It sounds basic, however, has your daughter tried chewing gum? That is one thing mentioned here: https://www.mayoclinic.org/diseases-conditions/rumination-syndrome/diagnosis-treatment/drc-20377333

My son was diagnosed with rumination syndrome after dealing with “vomiting” with no nausea, gagging etc. It’s something he dealt with for years, but it was assumed food was getting stuck. He had his throat stretched twice which made things much worse. He tried many medications, nothing seemed to help. He learned breathing techniques and these seemed to help the most. As strange as this sounds, he went off to college, and skipped his allergy shots for a few weeks and things started improving for him. He has been having less symptoms/episodes & actually gained the weight he had lost. I’m really hoping it was that easy & his symptoms never returned. I don’t have any fast treatments, but to look at something that changed in your life when the symptoms started. For him, it was an increase in allergy serum he was given. It was a fluke that it was figured out for him.

My daughter (14) has recently been diagnosed with rumination Syndrome. Has anyone else with this diagnosis experienced medical trauma? Interested in hearing from you.

Hi, I am sariah and I also have rumination syndrome I was diagnosed last year when I was 11 years old. life was really hard because of you know rumination but also my sister has an eating disorder and every time I threw up it would be triggering to her thank you for listening and just remember you will be ok I had a feeding tube for 6 months and I took the year to recover but what really helped was the rumination program at nation wide.

Yes, I got diagnosed at 11 and every time I go to the doctor I get really anxious and nervous even though I'm fine I just have bad memories there.

Welcome, @hannahyourbestie. I'm so glad you found help and are on the road to recovery. How was recovery after the removal of the feeding tube? What advice would you give someone about accepting the feeding tube as part of recovery?

@hannahyourbestie
Thank you for sharing your experience with treatment for rumination syndrome. It should be helpful to other members with same diagnosis.
I wonder if @ jess777 has any new information since posting in November 2023.
It’s not a very common diagnosis and treatments seem to vary. I think everyone must feel anxious.