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Hard To Swallow: Assessing Pediatric Dysphagia
Julia Casazza • Updated Jan 24, 2024 • 64 hits
Difficulties swallowing or feeding in children can engender devastating consequences. Aspiration and malnutrition represent immediate risks. In the long term, children whose swallowing problems remain untreated are at risk for avoidant / restrictive food intake disorder (ARFID). Determining and treating swallowing / feeding problems in children requires an attentive approach that considers medical comorbidities, anatomic abnormalities, and behavioral issues. Pediatric otolaryngologist Dr. Nikhila Raol of Emory University shares her pearls on managing dysphagia with the BackTable ENT podcast. We’ve provided the highlight reel in this article, and you can listen to the full podcast below.
The BackTable ENT Brief
• The differential diagnosis of pediatric dysphagia varies greatly by age. Latching / sucking difficulties predominate in infants, though congenital conditions like bronchopulmonary dysplasia or vascular malformations are also possible. Behavioral feeding difficulties are more common in older children.
• Cardiac surgery can injure branches of the recurrent laryngeal nerve, causing dysphagia. Among pediatric cardiac surgery patients, aspiration risk is independent of vocal fold motion.
• Clinic evaluation of a child with dysphagia should include a thorough head & neck exam and a functional endoscopic evaluation of swallowing (FEES), which enables the clinician to visualize the pharyngeal phase of swallowing.
• All children with swallowing or feeding problems should see a speech-language pathologist (SLP). Additionally, children with GERD requiring medication should see a pediatric gastroenterologist, and children with pulmonary symptoms should see a pediatric pulmonologist.
Table of Contents
(1) Pediatric Dysphagia Across the Ages
(2) Common Comorbidities Among Children with Dysphagia
(3) Examining the Child with Dysphagia
(4) Further Workup of Pediatric Dysphagia
(5) Teaming Up: The Role of Additional Specialists in Pediatric Dysphagia
Pediatric Dysphagia Across the Ages
Causes of feeding difficulties vary according to patient age. Dr. Raol often sees 3 to 6-month-old babies with latch issues, including tongue tie. Latch issues continue through 12 months of age, but inflammation associated with rhinitis of infancy can cause similar problems. While pediatric dysphagia isn’t an emergency, Dr. Raol recommends inpatient treatment for any infant losing weight. Older children are referred to her practice for a variety of reasons, including poor weight gain, mealtime difficulties, and abnormal swallow studies. Among older children, behavioral problems associated with feeding, including avoidant/restrictive food intake disorder (ARFID), are common.
[Dr. Nikhila Raol]
Yes. Three to six months, I think, or under three months, I think it's most commonly we're seeing these kids who are breastfed and coughing and choking with breastfeeding and may have some typical latch issues. I will say, I know it's super controversial and we're not going to get into the big tongue-tie conversation here, but I think that's one where some of these families when they come to us at that age range, they are having difficulty breastfeeding or they already had procedures done, like they went somewhere and got their tongue tie clipped and it didn't fix them. We're looking at what else could it be. Certainly, something that's impairing the suck, swallow, breathe mechanism is really common. I would say the two most common things we probably see are laryngomalacia and ankyloglossia in that age group, which doesn't mean that we always have to do surgery.
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[Dr. Gopi Shah]
Then once they get to like, nine to twelve months, are these the babies that they were fine with breast milk, but now we're trying solids or, "well, they always had something going on, but they slid by and now it's an issue"?
[Dr. Nikhila Raol]
Yes, I think you touched on both types of presentations that we see. Sometimes we'll see that they were just getting by okay, and now they're introducing the spoon and they can't really maneuver things well in their mouth. They may be coughing and choking on these things, or they may just be refusing. I think one extreme case I can actually think of is a kid who came to the behavioral program around eleven months of age and it had some breastfeeding issues early on, but not an obvious tongue tie that I think someone would say, "oh, just clip it and it'll fix everything." It had begun to refuse feedings, had an NG tube placed, ended up coming to the program because it was refusing solids, all these things, and actually ultimately got a G tube. At the same time that they got the G tube, because our astute speech-language pathologist said, "it just seems like they can't lateralize their tongue well with purees and stuff, other solids that they're taking."
We said, "Okay, they're already going under for the G tube, let's just clip it and see if it fixes it." Literally in the feeding program, the next three meals, they were already taking much more by mouth and the behaviors we think of like packing and interior expulsion and things like that, that we don't normally think about for a typical dysphagia aspiration type of stuff, that significantly improved. You do get that stuff in the history early on if you ask for it, but at that time it doesn't necessarily seem like a big issue because there's no obvious anatomic issue that we can just say, "oh, this will fix everything." Now I once had someone say to me, dysphagia is not an emergency. Absolutely, I agree with that statement, but I do think of it as somewhat of an urgency because now I see these kids in the whole spectrum of pediatric feeding disorder when if we don't manage the dysphagia early, then it starts to become behavioral in nature because it doesn't feel good.
It's either a lot of work to feed or it's going the wrong way or things like that has really changed how I support these families and also the urgency with which we do something for them.
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[Dr. Gopi Shah]
Every once in a while, especially if it's a newborn, the first four to six weeks, you worry about weight and failure to thrive. Do you have babies like that and to where you're like, maybe you need to go to the ER. Are there any red flags that you can tell us about?
[Dr. Nikhila Raol]
Yes. I would say definitely weight is a big issue. We trend weight really closely. We also look at if they have severe nasal congestion and that could be, we think about rhinitis of infancy and things like that typically like we do as otolaryngologists. We find that sometimes if they're not strong, like their oral skills are not strong enough, they could actually have some nasopharyngeal regurgitation because they're not pushing the liquid down with enough force or they're not controlling it well enough that some of it actually goes up their nose.
Then of course, with like laryngomalacia and suck, swallow, breathe and things like that, those are going to affect their ability to gain weight. Sometimes what we do is if we feel really like a kiddo is, it's not appropriate for outpatient management. There's not time, we do think of it as more urgent or emergent. We will send them to get admitted and get an NG tube placed with the plan for doing as much workup or intervention as we can as an inpatient. Then just making sure that the kid has adequate nutrition with the feeding tube, but also working up all of the potential causes so that hopefully the feeding tube is very much temporary
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Common Comorbidities Among Children with Dysphagia
Dr. Raol describes her pediatric dysphagia clinic as a “last stop” for patients seeking relief. Many of these patients follow with other specialists for unique medical needs that affect their swallowing. Among infants, prematurity causing muscular weakness or abnormal anatomy associated with bronchopulmonary dysplasia (BPD) can cause swallowing problems. Similarly, children affected by Down syndrome or cerebral palsy can struggle to swallow due to poor oral control and laryngeal inter-arytenoid notches. Children who undergo cardiac surgery can sustain injury to branches of the recurrent laryngeal nerve which then predisposes them to aspiration. Among cardiac patients, aspiration risk is independent of vocal fold motion.
[Dr. Gopi Shah]
Yes. Tell me about some of the comorbidities some of the patients have. You'd mentioned the cardiac kids. What other medical comorbidities do some of the patients have and what percent are otherwise no past medical history?
[Dr. Nikhila Raol]
We are a last step for a lot of these people. We do see kids who have no other issues, but probably the routine consult we get are going to be your cardiac kids, premature kids, and that includes BPD type of stuff. The respiratory component is affecting them, but also just straight-up preemies who maybe don't have lung disease, but don't have the skills either. Their oral skills didn't develop appropriately. We see a fair number of kids with some hypotonia, but often these are the kids who are like maybe your Down's kids or CP kids who are functional enough to eat something by mouth, but maybe need some strategies or maybe even an intervention to get them over the hump.
I will say I've seen some kids with the deep inter-arytenoid notches in the Down's population who for our normal kid, this may not have caused issues, but for these particular kids, they are causing issues because they have oral control problems also. I think you definitely think of those kids with comorbidities in a little bit different way, right? You don't just say, oh, anatomically, there's nothing obvious. You think of it more as, well, it's a second hit with what they already have. Maybe you'll be a little more aggressive in trying something to take away that minor anatomic issue.
…
[Dr. Nikhila Raol]
I will say when I first started down this whole journey, we started with the vocal fold paralysis patients. That was our first group of patients that we actually, my research started with screening for vocal fold motion impairment and how that affects NG tube placement and how that affects their feeding in the long-term. What we found was that there's a lot of kids in the cardiac population who the dysphagia and the vocal fold issues are often separate. Actually, there's a nice paper from the Texas Children's Group, Julina Ongkasuwan, and she's done some great work in the cardiac population as well, and has actually shown that there are kids with aspiration whose vocal folds are just fine.
We know some of it's sensory, some of it's skill, and I suspect that even if the recurrent laryngeal nerve is not cut, there are some sensory branches also that are affecting the sensation, and that is something that we definitely see just takes time to recover. We also see aversion in those kids for sure. I know it's scary for the cardiac team to say, "let's let them try," because this is a population where one hit can be devastating, right, can be life-threatening if they aspirate once. They tend to be a little heavier-handed with saying NPO, whereas we try our best to not make kids NPO. That's one of the things that I'd really change is like,
Examining the Child with Dysphagia
Dr. Raol evaluates swallowing in her patients using data gathered from her physical exam and a functional endoscopic evaluation of swallowing (FEES). The physical exam evaluates structures used in swallowing, including the palate, tonsils, and uvula. Tongue mobility is similarly evaluated. Looking in the child’s nose, she assesses for nasal narrowing or congestion, the latter of which can impair swallow coordination. After the physical exam, she performs FEES to visualize the pharyngeal swallow. When performing FEES, she ideally has two speech-language pathologists (SLPs) assisting. One SLP holds the child and the other SLP feeds the child while Dr. Raol drives a flexible scope.
[Dr. Nikhila Raol]
I do a routine otolaryngology exam, but when I focus on, when I'm doing my initial exam, I'll look at tongue motion, lateralization, where the frenulum inserts into the tongue. I will tell you, I strongly dislike the terms anterior and posterior ankyloglossia. I just look at for the kid, how much free tongue do they have and how much can they move it around? Then I'll look at the palate, how high arch the palate is. I'll look at the tonsils because tonsils can definitely impact feeding. I think that has been understudied. Honestly, I can only think of one study off the top of my head that was done subjectively with parents saying that swallowing improved when their tonsils were, kids had their tonsils removed for other reasons, but they did get better.
Those are my routine things that I'll look at. Obviously, I look at the palate, look for, if there could be submucous cleft or bifidity of the uvula. If you come see me in clinic, you're probably going to get a FEES. That's what's become a part of our exam and workup. The initial regular physical exam focuses a lot on the oral cavity and oropharynx. I'll also look in the nasal cavity and see, do they have significantly narrowed nasal passages? Do they look very congested, as that can definitely impact the ability to coordinate sucking, swallowing, and breathing.
…
[Dr. Gopi Shah]
All right. Let's talk about the FEES. Tell us sort of what is your setup like? What are some of the tricks or tips that you have that seem to work with you? If you can't see, how do when to stop, or temporize the situation?
[Dr. Nikhila Raol]
I think, the most important thing is to have a really good speech language pathologist who is comfortable with FEES, and not just comfortable with FEES, but comfortable with kids being uncomfortable during the exam. We've seen that at least in infants under one, under maybe 10 months and under, we can typically get them to calm enough to get something in them. You might have to wait two or three minutes for them to calm down. Don't give up. That's the biggest advice I would give you is don't give up too quick. You have to prep the families for this too.
We do allow parents, if they're comfortable, to stay in the exam room with us. I always advocate for the parent, unless we're breastfeeding, for the parent not being a part of the feeding. I don't like to associate that, I don't like the kids to have that association as much as possible. On our good days, when we have two SLPs available, one will hold the baby, I will drop the scope, and then the other will feed the baby. If we don't, then we'll involve the parents if we don't have another choice, if we only have one SLP available. We always make sure the parent is comfortable with being the bad guy a little bit.
We do use green dye. I know some other places have talked about using a white dye because of how it sticks to the surrounding tissues. We like the green, it has worked well for us. When we're doing breastfeeding FEES, you can either come from in front of the baby, or come over the shoulder of mom, whatever is more ergonomically feasible for you. Then we'll usually let the baby start feeding first, and then we'll pull off, put a little green dye either in the mouth or on the nipple, mom's nipple, and then let them start feeding again.
Now, it doesn't always work, the green doesn't always make it where we want it to. Even the breast milk has some color to it, so it's usually enough for us to be able to see. Worst case scenario, if we cannot get a baby to calm down, we do take a little liquid in a syringe, and we'll squirt it into the cheek, and then that forces them to control it as best as we can. We always note all of these things on our documentation, so we know, this is not a natural way the baby feeds, it's squirting something in their mouth.
It can help us identify potentially a site of entry. When we're doing bottle feeding, we'll try multiple different thicknesses, we'll try different nipple flow rates, and then if the baby's old enough, we'll try some purees. like I said, the two keys are having patience and having a good SLP. Then if you just cannot get good information, they're just not cooperating, we'll just pull the scope out and do a clinical evaluation.
You were talking about when you can't see. Usually, when you can't see, at least in my experience, it's one of two things. One, it's the baby just can't hold still enough, and those days I'll say, ah, the baby won, we lost. We lost this battle. Maybe that happens about 15%, 20% of the time.
Further Workup of Pediatric Dysphagia
Further testing is ordered based on results of the physical exam. CT chest or CT neck with contrast are warranted in a child with a suspected vascular malformation. MRI brain, which requires sedation in younger children, should be saved for those with suspected brainstem abnormalities, such as Chiari malformation. Triple endoscopy (a combination of diagnostic laryngoscopy with bronchoscopy (DLB), flexible bronchoscopy with bronchoalveolar lavage, and esophagogastroduodenoscopy (EGD)) requires a trip to the OR. Accordingly, she reserves “triple scopes” for cases when the physical exam cannot provide adequate visualization. While in the OR for a triple scope, Dr. Raol may combine her DLB with frenulectomy or laryngeal injection, if warranted.
[Dr. Gopi Shah]
Then in terms of other imaging modalities like CT chest, CT neck, an MRI brain, are those ever indicated, and who are you thinking about?
[Dr. Nikhila Raol]
Absolutely. I would say if we're talking about CT chest, those kids are in our Aerodigestive clinic. Sometimes we use those when we have concern for any vascular compression that might be causing those noisy breathing, and dysphasia and whatnot. If we're worried about vascular compression, now mind you, these kids have typically already had a endoscopy, like a flex bronc or DLB, and we have suspicion. The other times that we have used it is if we have parents who are a little bit in denial of what's going on, and they really are nervous about intervention, and they really think their kids are okay. The CT chest, when we see those signs of long-term impact of the chronic aspiration, then they seem more willing to be more aggressive with management.
MRI brain is a great question. I don't usually get MRI brains until kids are at least two years old, and that's for two reasons. One is the yield is not super high, although we just had a retrospective series that was published that showed that Chiari or abnormality at the brainstem is definitely more common in these kids with dysphasia, but it's still not that common.
The willingness or how enthusiastic neurosurgery is to intervene is fairly low because it's a huge procedure. You're talking about shunting these kids often. If you are seeing a little bit of prominence of the cerebellar tonsils, is that enough to say it might fix the dysphasia because it might not. You might go through this big procedure, and they still have dysphasia issues. We've had a couple of success stories of kids who had Chiari, and then had a neurosurgical intervention and got better, but it's not a sure bet that that's going to fix it.
It's just typically in my kids who are two years of age, have not had any response to any other interventions, and maybe you're seeing other signs like a bunch of pharyngeal residue, or other delays that maybe are making you think this could be a primary neuro issue. That's when we start thinking about a brain MRI.
…
[Dr. Gopi Shah]
In terms of the triple scopes, let's say the patient comes to you, and they've had the triple scope. When do you consider repeating it, and what information do you want prior triple scope? What is something the outside ENT can make sure that they've either snapped a photo of, or checked for on the scope?
[Dr. Nikhila Raol]
I would say the two things from an otolaryngology perspective, that you always look back at the pictures for-- First of all, always take pictures, so that we can see if you're referring to us or anybody who's maybe in a aerodigestive type setting. We all have different interpretations, I think, of what a meaningful deep notch or a cleft looks like. If I feel like what someone else called not a cleft or not a deep notch, and didn't do any intervention, and oftentimes I'll have then done a FEES and seen inter-arytenoid penetrations, or we just don't really have any other sources, I might take that kid back, and go ahead and inject and see.
I've had some families just say, "can you just go ahead and repair it, even if we're not sure. Can you just repair it, if you feel like it's deep," and I will. It's rare that we're doing that immediately, but if it's already their second endoscopy, I'll have a much lower threshold to do that if the families ask.
The other thing I'll look at is, as I was saying about laryngomalacia. Sometimes we do those DLBs, and their aryepiglottic folds look a little tight, but they don't necessarily have the classic laryngomalacia symptoms, then I would have a lower threshold. Especially if I have a FEES that shows some of those things I was talking about, like that entry through the epiglottis, or a little bit of redundancy of their arytenoid. I would take them back to say this might help.
Teaming Up: The Role of Additional Specialists in Pediatric Dysphagia
As most dysphagia treatments are non-surgical, effective management of pediatric swallowing issues requires a team approach. Any patient with swallowing/feeding difficulties should be referred to a speech-language pathologist (SLP) immediately. Children with comorbid gastrointestinal (GI) issues, such as eosinophilic esophagitis or gastroesophageal reflux disorder (GERD) requiring medication, require GI referral. Children with mild GERD do not require GI referral. Pulmonary referral is typically unnecessary in the absence of pulmonary symptoms or diagnoses.
[Dr. Gopi Shah]
Then, you have your GI and your speech pathologist who's also a lactation specialist certified, they're with you. For those of us who practice, they come into our general peds clinic or general ENT clinic. When should we start consulting our subspecialists, and is there an order in your mind?
I found myself consulting speech right away, especially in my younger-- anytime actually, for dysphagia. Then in my younger ones, I would pretty much get GI onboard pretty early, specifically for the reflux stuff because again, like you said, the reflux meds, is this where we want to start, not start? Then for pulm, sometimes I'm like, did I consult them too late? Because I didn't have a frank aspiration history, but is there something else going on? How do you organize that in your mind?
[Dr. Nikhila Raol]
I 100% agree with you that every kid who has swallowing issues, you need a speech partner. You need an SLP working with you on it, because again, we are surgeons, and everything is not a surgical problem when it comes to dysphagia. I would say, there's probably more things that aren't a surgical problem than are a surgical problem. Having a great SLP as part of your team is critical. I'd say that's the most critical.
Now, involving GI, it's hard because as we know, especially in pediatric settings, it is not easy to get appointments. Wait times are long. I think that if you are thinking about taking a child to the operating room, you absolutely should get GI involved because you're going to want to know, do they want to scope the kid? That's one thing.
We've had some under one-year-old kids who have been diagnosed with eosinophilic esophagitis. I think that to me is probably the one where I would say, get them involved. At least ask them, if they want to join you. Then other times, you're right, from a reflux perspective, you may not necessarily need to send them to GI, but I at least get GI's opinion if I'm considering starting reflux meds. I make sure they have GI follow up, so that if I'm starting it, then GI will see them, and see if there's been any improvement. Do we need to continue it? Do they need any other workup for true reflux issues?
Oftentimes, though, if you're working with speech, we try thickening first. Rachel Rosen's group out of Boston Children's has wonderful work on that, how thickening is actually a better start than automatically starting reflux meds. If you are practicing by yourself, without a multidisciplinary team for all these kids, I would say get SLP on board for every patient that with dysphagia, and then have a good GI colleague who you can turn to where you might just curbside them for some of these kids. Also, if you're considering like some of your more conservative measures haven't worked, like thickening, pacing, nipple change, things like that, and you're thinking about being a little more aggressive with regards to intervention, you can ask them to join you for evaluation if needed.
You're talking about pulm. I don't think pulm is necessary in every kid, unless they've had any kind of pulm history, like those kids who come in with viral infections, and that's what triggers their dysphagia, or it's the first time you notice the dysphagia. Those kids, I typically do have pulm involved because they've been started on Flovent or Budesonide, nebulizers, things like that. You want to make sure they're optimized from a lung health standpoint, so you can be a little more aggressive or a little bit more trial and error from a dysphagia perspective because, obviously, you want to protect the lungs at all costs for sure.
Then if they have a frank pulmonary issue, then we're going to get them involved, for sure.
Podcast Contributors
Dr. Nikhila Raol
Dr. Nikhila Raol is a pediatric otolaryngologist at Emory University School of Medicine.
Dr. Gopi Shah
Dr. Gopi Shah is a pediatric otolaryngologist and the co-host of BackTable ENT.
Cite This Podcast
BackTable, LLC (Producer). (2023, September 26). Ep. 132 – Challenges and Innovations in Pediatric Dysphagia Management [Audio podcast]. Retrieved from https://www.backtable.com
Disclaimer: The Materials available on BackTable.com are for informational and educational purposes only and are not a substitute for the professional judgment of a healthcare professional in diagnosing and treating patients. The opinions expressed by participants of the BackTable Podcast belong solely to the participants, and do not necessarily reflect the views of BackTable.