Rumination Syndrome – PediaCast 449
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- Drs Desale Yacob and Ashley Kroon Van Diest visit the studio as we explore rumination syndrome. Learn the cause, symptoms, diagnosis and treatment of this condition and discover how it differs from vomiting and reflux. We hope you can join us!
Announcer 1: This is PediaCast.
Announcer 1: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children's, here is your host, Dr. Mike.
Dr. Mike Patrick: Hello, everyone. And welcome once again to PediaCast. It is a pediatric podcast for moms and dads. This is Dr. Mike, coming to you from the campus of Nationwide Children's Hospital. We are in Columbus, Ohio.
It's Episode 449 for January 14th, 2020. We're calling this one "Rumination Syndrome." I want to welcome all of you to the program.
So today's topic is one of those things that is certainly out there. In fact, in one small study, it's estimated to affect about 5% of children. Although we don't really know exactly what's the prevalence of this condition is, there are lots of studies out there that cover large populations of kids.
But if that one small study does hold to be true across the entire United States, we're talking about 1 in 20 kids which means about 1 child for every classroom of 20 kids on average. So it's one of those things that I wouldn't necessarily call it rare but it's out there. It's something that we see quite a bit. And again, it is called rumination syndrome.
And yet, if a random parent is playing trivia crack and the question comes up, what is rumination syndrome, I think some folks would have trouble telling what exactly it is. There may even be some pediatric providers out there that have a vague idea but they're not really sure.
For the parents out there, you might think about an animal that ruminates or brings food back up from the stomach and then choose on its cod. I think that would be a reasonable thing to think if you heard that phrase.
Or the answer might be a person who dwells on a specific thought or topic, perhaps to the point that it interferes with their quality of life. They are ruminating.
However, it would be the third answer that is the correct one. Rumination syndrome refers to a human health condition typically affecting school-aged children and teenagers where food comes back up from the stomach during or shortly following a meal.
Now, you may be thinking, wait, isn't that called vomiting? No, vomiting is more forceful with heaves and retching. This is just food that comes up effortlessly, and kids may then swallow it back down or they may spit it out, but it's not really forceful vomiting.
Okay, what about reflux? That describes stomach contents coming back up the esophagus, right? Yes and no, reflux and rumination do have that point in common. But they're also very different with regards to their cause, the typical symptoms that you see, and certainly, their treatment.
So it is important to identify kids who have rumination syndrome so they can get the appropriate treatment, which in turn will improve the quality of their life and their family's life and avoid potential complications that can arise when this disorder is left untreated.
And, by the way, anyone can become affected by rumination syndrome. In fact, sort of the leading theory right now is that the whole process sort of get started following a viral infection. So you may have a little stomach virus, you got some vomiting from that. And then, that sort of cascades into long-lasting rumination syndrome.
Unfortunately, there's a lack of awareness on this. Rumination syndrome is not something that immediately comes to mind when kids bring up food or swallow it down or spit it back out. Again, it often does get labeled as reflux or vomiting. And the true diagnosis and appropriate treatment are delayed.
So the goal today is to raise awareness by shining a spotlight on rumination syndrome for parents and pediatric providers and maybe, just maybe, there will be some folks in the audience today who say, "Wait a minute, I think this might be going on with my child," which hopefully will result in a visit to your child's doctor, and then questioning them about the possibility of your child's symptoms being caused by rumination syndrome.
Or maybe could be a couple years down the road, your child does have a little viral bug and then this starts to happen, and you think back, "Hey, I heard about this on PediaCast. We're going to go and talk to our doctor."
To help me cover this condition, I have a couple of terrific guests this week in the studio. Dr. Des Yacob, he's a pediatric gastroenterologist, and Dr. Ashley Kroon Van Diest, a pediatric psychologist, both with Nationwide Children's and our Rumination Syndrome Treatment Program.
Before we get to them, don't forget, you can find PediaCast in all sorts of places. We are in the Apple Podcast app, Google Play, iHeart Radio, Spotify, SoundCloud, and most mobile podcast apps for iOS and Android.
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So, let's take a quick break. We'll get our guests settled into the studio and then we will be back to talk about rumination syndrome. That's coming up right after this.
Dr. Mike Patrick: I am joined by two terrific guests this week. Dr. Desale Yacob is a pediatric gastroenterologist at Nationwide Children's Hospital and an associate professor of Pediatrics at the Ohio State University College of Medicine. And Dr. Ashley Kroon Van Diest is a pediatric psychologist at Nationwide Children's.
Together, they evaluate and treat children and teenagers with rumination syndrome. That's our topic today, so let's give a warm PediaCast welcome to our experts. Thanks so much for being here today.
Dr. Desale Yacob: Thank you.
Dr. Ashley Kroon Van Diest: Thanks for having us.
Dr. Mike Patrick: I really appreciate both of you taking time out of your busy schedules.
So Des, let's start with you. What exactly is rumination syndrome? It's like one of those things that I've sort of remotely heard about but not very familiar with it. And I think that's going to be the case with a lot of the audience. So what is really meant by that?
Dr. Desale Yacob: So rumination syndrome is defined as effortless regurgitation or vomiting that occurs soon after you have had something to eat or drink. And it happens sometimes during a meal. And there are times when it may happen a little later but not more than half an hour or so later.
Dr. Mike Patrick: Yeah, after meal.
Dr. Desale Yacob: Exactly. And it's something that does not happen during sleep time. And it's something that is very effortless and it comes to the mouth and people sometimes may not even realize that. They just regurgitated and their mouth is full of food.
Dr. Mike Patrick: So this is not really retching or what really what we would think about as vomiting, which there's effort involved with those things, correct?
Dr. Desale Yacob: Exactly. And that is where the difference is. If someone is retching, if someone is vomiting in a projectile manner, or if they're having forceful emesis or throwing up that would not go along with the diagnosis of rumination syndrome.
Dr. Mike Patrick: Yeah, and we're going to get into more specifics as we proceed. But reflux, sounds that like that could be a little more difficult to differentiate reflux from rumination syndrome, where food sometimes does come up into the mouth, right?
Dr. Desale Yacob: Yeah. So I'm glad you brought that up because the one thing that differentiates between rumination syndrome and reflux is that reflux happens even during sleep time. It actually is something that may happen even more frequently during sleep time when someone is laying down, but rumination does not.
Dr. Mike Patrick: Okay, and so rumination is going to be during meals or like within the 30 minutes or so after meals.
Dr. Desale Yacob: Exactly. It's associated with a meal or soon after a meal and, obviously, are going to happen during wake time.
Dr. Mike Patrick: So Ashley, how common is rumination syndrome and who is affected by this?
Dr. Ashley Kroon Van Diest: Well, we think of rumination to be relatively rare, but I would say that we don't really have good data on that. The estimates that we have in terms of prevalence are I think kind of skewed. If you were to do a map of the patients that we see here just at Children's Hospital of the patients we have identified with rumination, you would definitely see a higher diagnosis rate just here in Ohio and surrounding states because our center is a place where people come from close by and we recognize it and diagnose it more frequently.
The same thing would happen if you if you went kind of do a map around other children's hospitals like Boston Children's or CHOP for example. They have centers that are more familiar with rumination as well.
So one thing that we are trying to do for a research standpoint is collect some data to better understand what the prevalence rates are truly like.
Dr. Mike Patrick: As I was researching this topic, I came across some numbers, and one was that there was one study but it only looked at like 2,000 kids. And in that sample, which could again be skewed because there's more awareness amongst the investigators to be able to diagnose it, but within that sample it's about 5% of children. But as we learn more, we could find that it's more common than that or less common than that in some areas, more common in others.
But if you think about 5% of children, if that number does hold, that's still like 1 child in every classroom of 20 kids. So it's sort of rare but not unheard of either.
Dr. Ashley Kroon Van Diest: Right. If you ask me, I see multiple of these kids every day of the week. So that's part of my bias of saying is it really rare because I see it so often.
Dr. Mike Patrick: Yeah, yeah. Now, there are some conditions, other underlying conditions that tend to be associated with rumination syndrome, correct? Some behavioral health conditions that are often present along with it.
Dr. Ashley Kroon Van Diest: Sometimes. I would say we definitely see in terms of like who this would be affected. There's somewhat of a patient characteristics that we see. A lot of our patients with rumination tend to be very kind of type A, very internally driven, motivated, really desperate to be straight A students, work very very hard at school, often engage in a lot of extracurricular activities, whether it's sports or clubs and things like national honor society,
Not that all of our patients fit that stereotype. I think along with that, we do tend to see there is some anxiety that often existed before rumination started. And then, we tend to see anxiety increase once rumination does begin because then we have this added layer of being nervous about eating in front of people. Because, "I don't want to throw up when I'm at school in front of my friends or when I'm at sports or out in public at restaurants."
Dr. Mike Patrick: And I think it's an excellent point. I'm glad you differentiated between there were some anxiety before the rumination symptoms started because certainly, once you have food coming back up into your mouth while you're eating on a fairly regular basis, I would think that would definitely cause anxiety.
Especially if folks aren't able to tell you what it is that's wrong with you or why you're doing it. And there may be adults in your life that think that you're doing it on purpose or somehow trying to get attention because of this. And I think even depression could play a role then, too, as kids are dealing with this.
Dr. Ashley Kroon Van Diest: Yeah, depression definitely seems to be I think in most of our patients more of a side effect if you will, because many of them end up having to drop out of sports or not being able to go to school regularly or even completely transitioning into homebound or online school.
So then, they become more socially isolated as a result. And that's when we tend to see more of that depression, mood goes down, just generally being kind of irritable. That, in addition to if they're suffering from any kind of malnutrition, then we see negative side effects from mood anxiety as a result as well.
Dr. Mike Patrick: So Des, what causes this? Why do some kids bring food back up into their mouth while they're eating or shortly after a meal?
Dr. Desale Yacob: So these children who develop rumination are, as my colleague Ashley was saying, kids that were perfectly healthy and doing well. And they may have had a viral illness like we could all have. And that viral illness may lead to rumination syndrome. So, viral illness and functional GI disorder.
And they may have nausea or they may have dyspepsia. And at one point, the stomach learns how to empty whatever is put into it, and by doing that it may feel better.
So it's a learned behavior. It becomes something that is a necessity for the stomach. And that leads to something that is either is a severe rumination or mild rumination or moderate rumination. And the goal is to identify it, diagnose it, and initiate therapy as soon as possible.
Dr. Mike Patrick: In my reading -- and again, I was not familiar with this until I sort of researched it -- but there was some talk of abdominal wall muscles being involved. What role, if any, do they play in this syndrome?
Dr. Desale Yacob: So as we were talking earlier, if someone is vomiting because they have a viral illness, it's the GI tract actually contracting and pushing things out. But with rumination, it's not the GI tract that contracts, it's the abdominal muscles that contracts and apply pressure on the GI tract. And that is applied simultaneously over the entire GI tract and that will force things to come up.
So somehow, the brain got interaction, the brain will trigger the abdominal muscles to contract so that you could have expulsion of the food that is in the stomach. And that leads to the relief from the nausea or the dyspepsia.
Dr. Mike Patrick: And so, it becomes a learned behavior because you feel uncomfortable, you did something and that made you feel better and then it becomes sort of a subconscious, "I'm going to make my abdominal wall muscle tense up," without necessarily being aware that you're doing it.
Dr. Desale Yacob: Exactly. And some people refers to this as the tick disorder of the GI tract because it's something that happens without you even realizing it's happening.
Dr. Mike Patrick: How can parents suspect that this is the sort of thing that could be going on in their kids? So what sort of signs and symptoms? We kind of brushed on that a little bit, but in more detail, what signs and symptoms go along with rumination syndrome that as parents are listening to this, and they're thinking about their kids' behavior especially around mealtime, they should have the suspicion and bring this up with their doctor about the possibility?
Dr. Desale Yacob: So it goes back to the definition of rumination syndrome, if this is happening during a meal or soon after a meal and it seems to be very effortless, it just comes up to their mouth. And it happens consistently every time they try to eat or drink something. And if that is happening, the one thing that should come to mind is rumination before anything else.
Yes, just like anything else, you have to consider other diagnosis but that history, that observation should definitely make you suspect that this may be a rumination syndrome.
Dr. Mike Patrick: So initially, there were some nausea associated, maybe if there was a viral illness that kind of set this whole thing off. But does there continue to be nausea as they sort get into the habit of doing this? Is there still some upset feeling in their belly that the kids feel they're helping to go away by doing this? Or does this just happen out of the blue and there's no symptoms associated with it? Or probably some combination there, right?
Dr. Desale Yacob: No, that is an excellent question because you may have nausea as part of the viral illness, but you may also have nausea as a post-viral illness. So people could develop post-infectious illness functional dyspepsia, which by definition is nausea and abdominal pain.
So they may still have nausea and that nausea is something that as you were saying could be relieved by expelling whatever is in the stomach.
Dr. Mike Patrick: And nausea really happens in the brain, right? And so, it signals from the GI tract. What makes them continue to have nausea is it just something that their brain... Like signals from the stomach as they're eating, go to the brain, it gets interpreted as nausea? And then, can you retrain that or is there really something illness-wise going on that's causing nausea?
Dr. Desale Yacob: So maybe...
Dr. Mike Patrick: Maybe more of a philosophical question.
Dr. Desale Yacob: No, actually, to some degree, there is an answer to that. I mean, we talk about this on a regular basis whenever patients would come with functional dyspepsia, irritable bowel syndrome. Why would someone develop symptoms that are real, but at the same time, when you do some testing, whether it's an imaging study or blood work, you don't see anything wrong?
And it all falls down to this brain-gut interaction. I think the first thing that you have to discuss with the patient or with the families is that there are two nervous systems in any one of us. There's the central nervous system which is the brain and the spinal cord and then there's the enteric nervous system.
Those two nervous systems to some degree are independent of each other, but at the same time, they talk to each other all the time. So whatever the GI tract is feeling is going to send a signal to the central nervous system and the brain is going to react to that. And that leads to symptoms.
Dr. Ashley Kroon Van Diest: I think in terms of the how do we retrain this, certainly medications can be helpful but we do rely a lot on psychological intervention for not just for the rumination but for this kind of functional abdominal pain as well that can come along with rumination.
And we've actually done some research where we've looked at those centers of the brain that are responsible for being the parties that kind of overreact to these signals from the GI tract and really interpret those signals as nausea and pain.
And we found that if we can get patients to regularly use certain relaxation strategies, things like diaphragmatic breathing, which we'll kind of get to a little bit later in talking about rumination treatment. But those things actually help to decrease the reactivity of those particular centers of the brain that responds to those pain nausea signals that are being sent.
And so, over time, we can actually see decreases in things like the frequency and intensity of those symptoms just by using CBT strategies alone.
Dr. Mike Patrick: I would suspect this is one of those things that sort of to some degree is a little bit of a diagnosis of exclusion especially when you just present with the symptoms. So if you have a kid who has an upset belly often with meals, they have nausea and maybe they have the food coming up, you want to make sure that there's not another disorder that could be causing those symptoms.
What are some of the things that we should be thinking about that could kind of mimic this to some degree?
Dr. Desale Yacob: So as in everything else, when someone comes in with any specific symptom, you take a very detailed history and you need a physical exam. And at the end of that, you have to have differential, you have to have a list of what could potentially be the reason why they have that symptom.
So when I hear the story of child having effortless regurgitation, vomiting, during a meal or after a meal, I'm going to put rumination syndrome at the top of that list. And at the same time, I'm going to have a list.
And that may include reflux. It may include gastroparesis. It may include eosinophilic esophagitis. I will even include in that superior mesenteric artery syndrome or other anatomical abnormalities that could potentially cause the symptoms.
But when it comes to testing, I'm going to do a thoughtful approach to the testing. What is the likelihood of this versus that? But as I said earlier, there almost no other problems or diagnosis that would give you that very specific history of effortless regurgitation or vomiting during or right after a meal other than rumination.
Dr. Mike Patrick: And it's could be one of those things where if you think looks like rumination syndrome, you try to treat it and it gets better, then you have some confirmation that there wasn't some other cause that's there.
You said the word, gastroparesis, we have a lot of parents who are not gastroenterologist. What does that word mean?
Dr. Desale Yacob: Gastroparesis is a delayed gastric emptying because your stomach is not emptying whatever you put into it on a timely manner. But there is something about gastroparesis that is very different than what a rumination syndrome is.
In someone who has gastroparesis and they are vomiting as a result of the gastroparesis, they are more likely to vomit two hours, three hours later. Because by three hours, you expect most of the food, or by four hours, most of the food to have left the stomach. But there's a problem with delay in emptying, then that person may vomit.
Dr. Mike Patrick: And one other disorder that comes to mind that you probably want to make sure that this is not going on is an eating disorder. Although I would imagine that those kids are more likely to hide what's going on than to just be reporting it to the family that "Hey, food came up," right?
Dr. Ashley Kroon Van Diest: Yeah, there can be overlap in the two. So for sure, we have a lot of patients that come to us that simply have rumination, but they have had family members that have suggested "You're doing this to yourself or you're causing it," even if their pattern is really to be that open in front of the family.
A lot of our patients, they just get used to this pattern to the point where they will have a cup or a bowl or something that they set at the family table dinner table with. And as they eat, if their food comes back up, they just sit there and spit it into the cup and go right back to eating. And this just becomes the normal pattern for the family, which really doesn't fit in with typical eating disorders.
That being said, we do have patients that there can overlap with symptoms of things like bulimia and anorexia that we have to be very thoughtful about making sure that we're assessing for those variables.
The treatment for rumination is usually not successful if a patient has also symptoms of bulimia or anorexia at the same time. And then we would defer eating disorder treatment first.
Dr. Mike Patrick: When the diagnosis is not clear, what kind of workup can a family expect when they come and see the gastroenterologist for this. So there are procedures or imaging studies that you would typically do if you're not quite sure of the diagnosis.
Dr. Desale Yacob: So if you're not sure of the diagnosis but you still suspect that this is most consistent with rumination syndrome, one of the things that we have done, we would have the child eat or drink during the clinic visit. And let's say that the story is they are throwing up or they are vomiting immediately after they have had something to take. And the expectation is that that would happen if this has been happening every time for the past two months or six months, you'll see it.
And if they're there and they have this effortless regurgitation, that's to some degree a confirmation of what rumination syndrome is.
Let's take that step further. Let's say it's very atypical presentation or you're not sure but you still suspect it, you could also do an esophageal manometry. So an esophageal manometry is where you would place this manometry catheter with pressure sensors through the nose into the esophagus down the stomach. So you have pressure sensors that start in the stomach all out the way into the upper esophageal sphincter and you let them eat just like they will eat.
And if they have rumination syndrome and they bring something up, you will see a very typical change in the pressures. You will have simultaneous increase in the pressure throughout the GI tract. And that would be very consistent with rumination syndrome because if someone is vomiting for other reasons, that would not be the case. There will be a different pattern. So one of the things that you could do.
Dr. Mike Patrick: Is that something that if they don't have an episode in the clinic, can they go home with that monitor in place and like keep a 24-hour diary when they do have it happen? Or is it almost always it's going to happen, you're going to see these subtle changes when they're there in the office?
Dr. Desale Yacob: That's an excellent question because there are times when you have someone sitting there, and a number of people are just looking at him for a period of time.
M: Talk about anxiety.
Dr. Desale Yacob: Yeah, exactly. And the distraction and what have you. So there are times when we would leave the room and just let them sit there for awhile and let them eat and drink and remove all distractions. And most of the time, it would happen.
Dr. Mike Patrick: That's true.
Dr. Desale Yacob: But the other test is the antroduodenal manometry which is a similar kind of test but it is a little bit more involved. It's a catheter that is placed under anesthesia and after the anesthesia wears off, you have them there for six hours or more to kind of see what pattern of motility develops.
Dr. Mike Patrick: And if someone does undergo this, this is a really small catheter diameter, right? It's more like a wire than a tube, correct?
Dr. Desale Yacob: It's a little bit more than a wire but not bigger than a feeding tube. Actually, a little smaller than that.
Dr. Mike Patrick: So I imagine when especially when kids here, "Hey, you're going to put something on my nose, it's going to go down to my stomach," there may be some trepidation.
Dr. Desale Yacob: Definitely, yeah. I mean, our nurses do an excellent job in explaining and comforting and trying to put them at ease, but it's definitely not something...
Dr. Mike Patrick: One other question before we move on to treatment, in terms of symptoms between episodes, do these kids typically have any GI symptoms when they're not eating or is it only around mealtime?
Dr. Desale Yacob: You want to take this, Ashley.
Dr. Ashley Kroon Van Diest: I would say it depends. If we're talking about just ruminations specifically, typically no, unless they're drinking something. And so this is where we sometimes get a little bit of confusion over symptoms where someone will say, "But I haven't had anything to eat and it had been two hours and then suddenly, I threw up."
And when we really get to ask them what's going on, they had something to drink and that's really what came back up and kind of caused that vomiting. We certainly do have patients that have other kinds of abdominal pain nausea that is more persistent and not necessarily directly related to eating. So sometimes we do, but if we're talking about just rumination, typically not.
Dr. Mike Patrick: So let me just sum sort of the clinical picture of this, of when and especially we have a lot of primary care providers who listen to this podcast. And so, I think it's good to sort of sum up what this looks like, so you get thinking in the right direction.
But this is going to be repeated regurgitation of food. And kids they may reswallow it or they may spit it out but it's not the forceful retching that happens during meals or immediately within 30 minutes or so after a meal. It does not occur during sleep.
Symptoms can't be fully explained by another medical condition and eating disorders had been ruled out. We really don't think that this sounds like reflux. So we have a high suspicion that this is rumination syndrome.
What do you do next in terms of treatment?
Dr. Ashley Kroon Van Diest: We'll refer them to GI.
Dr. Ashley Kroon Van Diest: So we get a lot of referrals both internally and from outside of the hospital. So we are one of the only in-patient or I guess multilevel of care treatment centers for rumination in the country. So we actually get a lot of external referrals from children's hospitals all over the United States.
And the treatment, what it looks like is our patients always come here and meet with one of our gastroenterologist that specializes in rumination and with psychology. And we go through that clinical history ourselves to make sure that we do agree with that diagnosis of rumination, and then we start talking about treatment.
The treatment of rumination is largely behavioral. So as we talked before, because this pattern of rumination is just sort of subconscious change in the way the muscles around the stomach work when someone is eating. And we kind of operate like it's a tick. What we do is treat it like it's a tick.
And so we basically engage patients and have a reversal therapy. And so we are giving them a set of strategies they can use as they're eating to help what we call reset the stomach and kind of put it through a boot camp if you will, so that it goes back to learning how to tolerate food and fluids, that they're able to keep things down when they eat.
That process is not super fast. It's not something that we expect for them to fix in a very short period of time. And they definitely have to come in and actually have meals with us. So it includes watching them eat but changing things like how much they eat at a time. If they're eating really quickly, if there are certain foods that they know are really problematic.
For some reason, ice creams comes up a lot. So we usually say, let's stay clear of those when we first get started but the most important things that we teach patients is actually how to swallow back down what starts to come up, which helps to teach the stomach that food and fluid is really supposed to stay in, not come out.
And we combine that with diaphragmatic breathing that is meant to actually retrain and relax these abdominal wall muscles that are the things that are kind of tightening and causing that pressure and contraction of the stomach to begin with.
Dr. Mike Patrick: What is diaphragmatic breathing? How do you explain what you are trying to get these kids to do to the child?
Dr. Ashley Kroon Van Diest: It's hard to explain without being able to show you. So every time I talk to a child and a family about what I do, I always sit and put my hands in my stomach and I say, "What we're trying to do is practice taking deep breaths where instead of your soldier and your chest doing a lot of losing up and down, we see your stomach moving in and out."
And I will have the child put their hands on their stomachs so that they can actually do kind of do this alongside of me. And what I explain to them is really when they're doing this diaphragmatic breathing and their stomach is kind of moving up and down, what we're doing is we're actually stretching out and expanding all of the abdominal wall muscles.
It physically expands the abdominal cavity. So it makes more room for the stomach to be relaxed instead of have that pressure and kind of tightness around it.
The other thing it does is that actually stretches out and moves the position of the diaphragm muscle. And it actually lifts it up above the stomach to the point where it applies a little bit of pressure just above the stomach kidney area, the lower esophageal sphincter. So, it kind of seals the top of their stomach, anyway.
And we're able to kind of walk through and explain that to kids, to let them know the reason why we're asking to do this a little bit before they eat, when they finished eating. And then, definitely, if they're having episode of regurgitation, if they're swallowing back, they have to be using it then.
Dr. Mike Patrick: I like that the hand on the belly and change your breathing in such a way that your belly really goes out and then back in. And I try that as I was researching this, because I've not really heard of that before. So your brain knows what to do to make that happen. I guess it's something that's hard to explain but you change your breathing pattern in a way that makes your belly go out.
Dr. Ashley Kroon Van Diest: So I tell kids, everybody knows how to do this. We all do this at night when we're asleep, we just don't know it, because you're sleeping. So I think in some ways, telling kids they know how to do it, and then being able to show them how easy it is to do, most people get it really quickly. I mean, even within minutes in the clinic, they said, and they got it down.
Dr. Desale Yacob: Yeah, we actually had a patient together who had an esophageal manometry in place and we have them do this diaphragmatic breathing during the testing. You could actually see the change in pressure right where the diaphragm is and that is where the G junction is. So that's where the esophagus in the stomach meet and thus the first exit.
So for food to come out of the stomach and go into the esophagus and out, it has to go past that sphincter. So there is an increase in pressure there. You're able to actually prevent things from coming out.
Dr. Mike Patrick: So then the food is more likely to go in the right direction because there's less pressure at the bottom and more pressure at the top of the stomach.
Dr. Desale Yacob: Exactly.
Dr. Mike Patrick: Now, again, just researching this, I'm kind of like a parent who may put rumination syndrome into their web browser and see what's there. And I think one of the things that parents are going to come across is there's anecdotal reports which means that some people say it but there's not necessarily evidence that gum chewing may help.
Have you come across this? Or have parents asked you about should my child be chewing gum?
Dr. Ashley Kroon Van Diest: Yes. So, the answer is a little mixed to be honest. I've had some patients that found that it was helpful, and I've had a lot of patients that have said it is not.
When we chew gum, we have a tendency to swallow a lot more and you swallow more air when you're chewing gum, just kind of depending on the way that you're sort of chewing. And when that happens, you can end up with swallowing a lot more air in your stomach which causes more belching, which with the belch, their food can actually come up with it.
For some kids, just that act of repeatedly swallowing this little bit of flavored saliva can actually trigger rumination to happen. So for some patients, it can actually make it worse. For others, just being able to swallow it back down and just the normal movements of the muscles and the esophagus down into the stomach helps to push that down and keep it down then.
It's not something that we typically suggest here but if a patient shows up here and say, hey, I've been doing this and it works, we're not going to tell them to stop, but it's not part of our typical recommendation.
Dr. Mike Patrick: But our dental friends would say, "Use sugar free gum."
Dr. Ashley Kroon Van Diest: Right.
Dr. Mike Patrick: If you are going to try it. And don't use gum in young kids who might choke on it or something like that, okay.
Des, what complications can arise from this disorder if it continues to go unrecognized and untreated? Are there any?
Dr. Desale Yacob: So with rumination, not everybody presents with the same degree of severity. There are patients that present with very mild rumination where they have some minor stuff come up and they're able to re-swallow. And it doesn't really give them much of a trouble, so they don't lose weight, they do fine and they may not even come to see their doctor. Their family may not even realize that they're doing that.
And then you have patients who have moderate to severe rumination, where everything that they eat and everything that they drink comes up. And if that is happening and it's going on for long period of time, it's going to impact their weight or their nutritional health. And it may lead to dehydration, which means frequent visits to the emergency room.
It may also keep them away from socializing with their friends from attending school. So their quality of life could be impacted significantly.
So if that is happening, a lot of these patients may end up with having to feed through their nose or an IV line for nutrition. And as you alluded earlier, these are patients that are going to see their doctor, but if someone is not thinking of rumination, you're going through one test after another.
And as you know, with testing, nothing is without risk. It may be getting a laparoscopy or CAT scan or MRI. So the stress that comes from all these testing and not knowing what the answer is, is another possible complications.
Dr. Mike Patrick: Plus the sedation, radiation exposure, if imaging is not really needed and all, be something to think about.
Dr. Desale Yacob: Yeah.
Dr. Mike Patrick: What about the long-term outlook, Ashley, for those who are affected by this? Is this something that once you retrain things, it just gets better and goes away? Or does this continue to recur throughout adulthood?
Dr. Ashley Kroon Van Diest: This is probably the most common question that we get from patients and families. And we sort of have an answer to it. So there was one study where the center was able to track patients that come from our in-patient program, and track them anywhere between a year to five years after they discharged from the program. So we have a little bit of long-term data in what this looks like.
So we know that the majority of patients are able to do rather well in the program. They're able to get their symptoms under control. They're able to leave us eating and drinking enough that they need to kind of maintain their weight and hydration on a daily basis, all by mouth and keeping it down.
The majority of people do end actually having a recurrence of symptoms at some point in the future. And what we know about that is that it's most likely to happen after some sort of repeat illness. Kind of what we talked about in the beginning is what tends to come to us in the first place, it's the same for what tends to cause it to happen again.
Because we know this, we talk to all of our patients and families about it while they're here. We always give the education of "Listen, things are going really great right now. Six months from now, you may get a GI bug, and the next thing that you know, the GI bug might go away but rumination may still be here."
What we really encourage families to do in those moments is to think, instead of going into panic mode, "Oh, my goodness, this is back." This is going to be awful to go back to what day one was like when they were here for treatment and start it all over again.
They have the skills and the tools to actually reset things and most patients are able to do that in a relatively short period of time instead of going back into this months to year-long pattern of having the same symptoms all over again.
Dr. Mike Patrick: Is there increasing recognition of this in the adult world? So once they sort of graduate from being a pediatric patient, and they find that this is maybe happening again, and they're having more difficulty getting rid of it, are there adult gastroenterologists or clinics that also are looking at this?
Dr. Desale Yacob: So I don't know how commonly they encounter rumination syndrome in the adult world, but they are definitely aware of it, especially within the circle of those gastroenterologist who focus in functional gastrointestinal disorders. And hopefully, by the time that we transition our patients to adulthood, they have learned the tools.
But you're right, there may be someone who goes through their entire life and not have had the diagnosis and they may continue to struggle with that. But I think, there is some recognition of it, but I'm not sure exactly how commonly it's encountered.
Dr. Mike Patrick: We're trying to spread the word.
Dr. Desale Yacob: Yeah, exactly.
Dr. Ashley Kroon Van Diest: Parents really want to know what does this looks like for my kid when they're 30, or 40 years old and we don't know. And we tell them that. We are getting ready to start a multi-site study where we're going to just try and create a large registry of rumination patients across the United States, that are identified with rumination and essentially ask them to fill out some updated survey questionnaires maybe once a year if they're willing to see what happens.
Because that's only way that we're going to really know what does this look like. Because as a pediatric institute it's not like we see them when they're 30, 40 years old and really know what's going on.
Dr. Mike Patrick: Now, there may be some parents out there whose children are not affected by this at all but their kids do get viral GI illnesses from time to time. Is there anything that you could do to prevent this from happening, sort of on the coat tails of a viral illness?
Dr. Desale Yacob: So I don't think there's anything that you could do to prevent it. What I would say if it happens, the best thing you could do is recognize it and make the diagnosis and initiate therapy. The earlier that it's recognized and diagnosed and the earlier that the therapy gets started, the less complication and more effective the intervention is.
Dr. Mike Patrick: Ashley, you had mentioned that we have a rumination syndrome treatment program here at Nationwide Children's Hospital. And I'll put the link to that center in the show notes for this episode over at pediacast.org, Episode 449. Tell us a little bit more about the treatment program.
Like many of our programs here, it's multi-disciplinary. We have gastroenterologists, psychologists but I'm sure there's other professionals who are involved in the clinic as well.
Dr. Ashley Kroon Van Diest: Yeah, so we have in addition to those that you just mentioned, we have a physician assistant that helps with coordinating care for all of our patients. We also rely heavily on our dietitian friends within GI to help us, especially without patients that are requiring any sort of supplemental nutrition through tube feeding. Especially as we work towards getting them to eat more by mouth, to try and kind of balance out how much do we need to do the tube until eventually we can discontinue it altogether.
For in-patient program, we also have massage therapy and therapeutic recreation. So our treatment program is actually we have multi-levels of care that's based on a number of factors, largely the severity of illness.
So patients with more mild symptoms, they may not actually have regurgitation with every single meal that they eat. Or if they do have it, they're kind of already swallowing it back down on their own. So they're relatively stable in terms of nutrition and hydration.
Those patients, we're able to do more of an outpatient approach where they might come for a single treatment meal. Once we practice it together, I say go home and work on these things and come back and see us again in two to four weeks to see how things are going.
That's typically reserved for those that are local as well. We don't expect somebody who lives across the country to use that approach.
We found so far that with that method for those that kind of qualify for that level of care, that within two to three treatment meals, they don't need to come back anymore. Because they're doing well enough that they've kind of managed their symptoms, they're back in school, they're not super distressed, they're able to go on about their daily lives.
Then we have kind of a step-up level. That's our intensive outpatient level of care that is more for, can include mild symptoms with those who live far enough away that they don't have access to care locally.
But also really for those with more moderate to severe symptoms where they actually plan to come and stay here for anywhere from three to five days. And they're having two to three meals every single day, where they actually come in, they sit. They eat with us. They practice their strategies on repeat, over and over again.
So we're intensely working on retraining their stomachs and getting those muscles to relax when they're eating and helping them to learn how to keep things down.
The in-patient level of care is kind of our again next step up for those that are the most severe. And those that maybe they don't do as well in the intensive outpatient program and they might need a little bit more other services and might have to work on things a little bit longer than that three to five-day stay.
Dr. Mike Patrick: And then, of course, part of this is if there are any underlying behavioral health kind of things going along with it, such as anxiety, depression that you're able to also treat those things as well.
Dr. Ashley Kroon Van Diest: Correct. I will say that for our treatment program, if we have layers of anxiety, depression, or other psychiatric concerns that are really significant, we do actually suggest that patients manage those things before we work on rumination.
Dr. Mike Patrick: If anxiety or depression are severe enough that that really needs to be the focus of treatment, then we say let's table working on rumination for now. And many of those patients, they are getting their nutrition hydration through tubes at that point. So we kind of used that as our, "Let's just say stable from this standpoint. Let's fix these other stuff and then we can do with rumination later."
Dr. Mike Patrick: Yeah, that makes sense. Well, again, we'll put a link to the Rumination Syndrome Treatment Program here at Nationwide Children's in the Show Notes for this Episode 449 over pediacast.org. So folks can share that and use that as a resource. And of course, you're willing to talk to any primary care providers who need help with this at any time, right?
Dr. Ashley Kroon Van Diest: Yes.
Dr. Mike Patrick: All right, well, Dr. Des Yacob and Dr. Ashley Kroon Van Diest, both with the Nationwide Children's Hospital. Thank you so much for joining us today.
Dr. Ashley Kroon Van Diest: Thank you.
Dr. Desale Yacob: Thank you for having us.
Dr. Mike Patrick: We are back with just enough time to say thanks once again to all of you for taking time out of your day and making PediaCast a part of it. Really do appreciate that.
Also, thanks to our guests, Dr. Desale Yacob, pediatric gastroenterologist and Dr. Ashley Kroon Van Diest, pediatric psychologist, both of them with Nationwide Children's.
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