Friday, July 6, 2012

The Rumination Syndrome doctor at Children's Memorial in Chicago is Dr. Chogli. He is excellent. Talk to the nurse and insist (nicely) that she fit you in immediately because the problem has gone undiagnosed and misdiagnosed for x period of time. When I explained that he fit me in within 2 days.

He will then refer to one of the speech therapists that is trained in the diaphragmatic breathing technique. You cannot get to the speech therapist without a referral from a doctor for this specific breathing technique.

Monday, March 5, 2012

The Details of My Daughter's Case

  • It took 6 months to diagnose, then it was treated and cured within days.
  • She lost 25 pounds, the first 20 over 3 months, then the last5 pounds over 3 months
  • It started o March 23rd 2011 with a regular stomach virus which her best friend had the day before she got it.
  • The virus symptoms went away other than the vomiting small amounts to liters at a time. She couldn't keep almost any food or water down. She kept enough to not be sickly, and she was able to have normal amounts of energy, etc.
  • When the meds for constipation and reflux didn't help and the tests all came back normal  (blood tests, x-rays,some time lapsed thing that I can't recall the name of in which she had to drink cups of borrium, upper GI scope, stomach emptying, brain MRI, eye exam (to check if there is pressure on the brain causing vomiting), various clinical exams, psychological and psychiatric exams) the GI docs decided it was psychological and sent her to a psychologist and psychiatrist, both who said that she seemed normal and like mental illness was not the cause of this, but that they would treat it as such since the tests all came back normal.
  • In addition to all of the above, I took her to biofeedback, yoga, and acupressure.
  • The key to my friend finally diagnosing it in mid September (and not the GI docs who by this point had given up and said it was psychological) was a video recording of her 'effortless vomiting'. Once he looked up those symptoms he found an article from the Mayo clinic that described similar symptoms. We tracked down the doctor who did the research at a hospital in Ohio. It turns out she had trained with a GI at the same hospital (in a different practice group than the GI who I had been seeing since March) who she said is familiar with these types of cases. He was.
  • The treatment was a simple breathing technique (diaphragmatic breathing) taught in less than one hour by a speech therapist. The diaphragm covers the opening on top of the stomach so the food can only go one way. The brain quickly re-learns how it is supposed to work. After a one hour session she threw up once more and never again. This was over one month ago.
  • Since she was a 5 year old she was able to articulate that she doesn't like to drink liquids until she has some food in her stomach. Related in some way?

Sunday, March 4, 2012

Treatment and Relapses

Once the Rumination Syndrome was diagnosed, the treatment was quick and she immediately stopped vomiting. It was a one hour session with a speech therapist at Children’s Memorial who is specially trained in diaphragmatic breathing. The idea is that the brain has to re-learn that digestion is a one-way street. Diaphragmatic breathing forces the diaphragm to cover the top of the stomach so that the food doesn’t exit from the top. Its that simple. (Note: I understand that for kids with other complications this can be take longer to resolve.)

Since the time the rumination was resolved, my daughter has 4 relapses. The first 3 were isolated vomiting incidents which she corrected by practicing the breathing techniques. 

The 4th one required another one hour visit the the speech therapist to review the basic diaphragmatic breathing techniques. It was more challenging because it was triggered by a virus that caused her to vomit for 2 days. I was able to see after 2 days that her other virus symptoms had disappeared and only the vomiting remained. It was such a relief to know exactly who to contact to get the help she needed.

Saturday, March 3, 2012

More on what it turns out was not chronic vomiting due to anxiety or psychogenic vomiting.

Part of what was difficult as a parent was that it seemed like none of the doctors really believed me that the vomiting was effortless. They treated me as if that point was irrelevant. In the end this was the key to the diagnosis.

In late March 2011 my daughter had a stomach virus that caused her to vomit. The virus subsided after a couple days, but the vomiting continued. For six months in 2011 my daughter suffered from frequent daily vomiting. Literally everything she ate or drank came back up within 50 minutes. It went undiagnosed until late September 2011.

She suffered through dozens of doctors visits at Chicago’s two top pediatric hospitals including among the most reputable GI doctors, neurologists, and opthamologists, psychiatrists and psychologists. She took numerous labs, x-rays, time-lapsed x-ray studies, an MRI, and even a surgical procedure (endoscopy).

It was only after I video taped the moment that the vomiting occurred and emailed it to a pediatric neurologist friend that it was immediately diagnosed. The key to the diagnosis was that the video showed that the vomiting was effortless. There was no heaving, nausea, just a sudden appearance of vomit in her mouth. In the video she was in the middle of talking to me when her cheeks filled with vomit.

Friday, March 2, 2012

Is your chronic vomiting or psychogenic vomiting actually Rumination Syndrome?

I am the mom of a 14 year old who suffered from Rumination Syndrome. The great news is that once you have this diagnosis, the treatment it can be just a one hour visit with a speech therapist who is trained to teach diaphragmatic breathing. For us it was that simple.

I am writing this blog on Rumination Syndrome primarily to help educate those who suffer from the syndrome, their parents, GI doctors, speech therapists, psychologists and psychiatrists.

The main incorrect diagnosis was chronic vomiting due to anxiety or some other psychogenic vomiting. The other diagnosis that were briefly entertained were reflux, cyclical vomiting and bulimia.

It turns out that very few GI doctors are educated about rumination syndrome. At the hospital we went to, which is one of the most reputable childrens hospitals in the world, the GI doc that saw my daughter for 6 months didn’t know what it was. She thought rumination syndrome was psychological (which can be but isn’t always a component). Another GI doctor at the same hospital was very well educated about Rumination Syndrome and knew the treatment. He had treated many patients with Rumination Syndrome. Unfortunately, this practice of GI docs at the hospital doesn't talk about their cases with the other practice that we were working with. We didn't find him until my daughter had been vomiting for 6 months.