Rumination Syndrome

What is Rumination Syndrome?

Rumination Syndrome is a condition that occurs when people constantly regurgitate and either vomit or re-swallow their food or drink soon after eating. Although the syndrome was first described many years ago as occurring in young children with developmental disabilities, it is now recognized that the syndrome often occurs in children and adolescents with intact cognitive skills.

Even though more professionals are aware of rumination syndrome today, this condition still remains infrequent, poorly understood, and often misdiagnosed. Rumination syndrome frequently is confused with other gastrointestinal problems (for example, gastroparesis or gastroesophageal reflux disease) or eating disorders.  

The diagnosis of rumination disorder does not require any diagnostic testing. There are specific diagnostic criteria that exist that help professionals make the diagnosis. The symptoms of rumination syndrome are:

Rome III Criteria for Adolescent Rumination Syndrome

1. At least a two-month history of repeated painless regurgitation and re-chewing or expulsion of food
2. The behavior begins soon after ingestion of a meal
3. The behavior does not occur during sleep
4. There is no retching
5. Symptoms do not respond to standard treatment for gastroesophageal reflux (GERD).
6. No evidence of an inflammatory, anatomic, metabolic or neoplastic process considered likely to be an explanation for the subject’s symptoms

While these symptoms are common to patients with rumination syndrome, each patient with rumination syndrome has a different presentation. In other words, the symptoms can look quite different person to person. While some patients vomit immediately after eating even one bite of food, others are able to eat a good deal of food before the rumination starts. Some patients feel pain with eating. Others feel nausea. Some patients do not have any sensations before the rumination begins.

Although we do not know exactly how rumination syndrome starts, medical histories of patients with the syndrome suggests that the symptoms often begin with some “triggering” event. This can be a viral infection, a GI disease, or even stress happening in the patient’s life. After this infection, event, or stressor has gone away, the vomiting behavior remains in place, almost similar to a “tic.” As a consequence, when food or liquid enters the stomach, the body has learned a new behavior – contraction of the abdominal muscles – that results in the food or fluid coming back up.

What do we mean by “stress”? Stress can be defined in many ways. Stress can be physical, emotional or mental. Most people describe the feeling of stress as “strain” or “tension.” There are several different types of stress that all people experience.

1. Fatigue and overwork: Examples include being involved in activities, taking challenging classes, having poor sleep habits, taking on leadership roles, working a job while going to school.
2. Environmental: This type of stress refers to things going on around you in your life. This may include being teased or bullied, pain, family members arguing, family problems, multiple doctor visits, missing school, disagreements with friends, breakups, or living at two parents’ homes.
3. Internal: This type of stress refers to stress we bring on ourselves due to the way we perceive or see things. This may include things like having a negative attitude, being a perfectionist, trying to please everyone, having low self-esteem, keeping your feelings inside, criticizing yourself, or having unrealistic expectations for yourself and others.

How is Rumination Syndrome Treated?

Several studies of the treatment of rumination syndrome have produced some very positive and exciting findings. There seem to be many important components to the treatment of this condition.

1. Education.  Families who understand the diagnosis, do not worry that perhaps another condition is present, and who take an active part in treatment tend to make the most progress in treatment.
2. Undoing the newly learned “habit.”  Treatment includes focusing on becoming more aware of what your abdominal muscles are doing, learning new behaviors for your abdominal muscles instead of tightening, and keeping your body relaxed during mealtimes.
3. Retraining your stomach to hold food again.  Patients benefit from starting very slowly and then gradually increasing their stomach’s ability to tolerate greater food volumes.
4. Teaching you how to regulate your own nervous system.
5. Teaching you how to manage stress and its impact on your body.

Inpatient Treatment at Nationwide Children’s Hospital

While some patients with rumination syndrome can be treated in the outpatient setting closer to their homes, other patients benefit from an admission to the hospital. An inpatient admission is essential for patients who are reliant on tube feedings or parenteral nutrition, as their nutrition and hydration need to be closely monitored.

Our program is unique, in that we have multiple experts working with our patients, all with different backgrounds and skills, but all working toward the same goal of eliminating the rumination behavior. Our team consists of members of each of the following disciplines:  Gastroenterology, Pediatric Psychology, Clinical Nutrition, Child Life, Massage Therapy, and Therapeutic Recreation. The daily schedule includes times with each therapist, and specific times each day in which patients work on their eating skills.

We have found that patients age 12 and older seem to do the best in our program. Our treatment approach requires patients to have insight into their challenges, be able to work independently, and to have the ability to work continuously throughout the day.

How to Become Involved in our Program

• Patients cannot be self-referred or referred by their family. A referral must come directly from the gastroenterologist who has knowledge of the patient’s medical history and prior testing.
• The physician should contact the Motility Center by calling (614) 722-3456. Records can be faxed to (614) 722-3454. The pediatric gastroenterologists involved in the Motility Center will review the child’s medical history and will decide whether further testing is needed.
• In most instances, we will arrange for an outpatient visit with the family in order to review the patient records, conduct a physical examination, and have the patient and family meet with members of our treatment team. This visit helps us determine if our program is the right fit for the patient and family's needs. 

Patient Story