Pediatric Dysphagia: Signs, Symptoms & Treatment

[Dr. Gopi Shah]
For infants, and again, we're talking about infants under a year, how do they usually present to you when they're feeding difficulties?

[Ashley Brown]
Whether it be in clinic or just a PCP referral from the community to our outpatient clinic, generally the infants present to us because they're a failure to thrive. They're not gaining weight. They are pulling off breast or bottle frequently. Maybe some reports of coughing, watery eyes, red eyes when they're eating, not completing their feeds, super fussy during feeds, refusing is I would say the general referral reasons that we get when it comes to infants.

[Dr. Gopi Shah]
How old are they usually? Are they usually early on, like a couple of weeks, a couple of days, or do some of them present a little bit later on?

[Ashley Brown]
We will get them when they are a few days, maybe a couple of weeks old, all the way up until, like you mentioned, that 12-month-old mark. Probably our youngest patients are seen within our craniofacial weight check clinics that we have, because when those babies are born with cleft lip and palate, they need to get in immediately, see the surgical team and the speech therapist, because they require such specialized feeding systems. Those are probably our youngest patients, but I've done swallow studies on a baby that's about two weeks old.

[Dr. Gopi Shah]
There's quite a range.

[Ashley Brown]
A very large range and within that range, you are looking at rapid developmental changes. A two-week-old infant does not equate a six-month-old infant.

[Dr. Gopi Shah]
When these babies come to you, how do you organize your thought process? Or like what kinds of questions? Are there the same basic handful of questions that you ask and then you tease it apart? How do you look at these and then what kinds of questions are you asking?

[Ashley Brown]
We definitely start with a standard set of questions, probably very similar to questions you would ask in your practice, asking about birth history and then getting into what brought you in today. What are your concerns? Tell me what a feed looks like in terms of quality, quantity, the time it takes the baby to finish. From there, then you start delving into specific questions that apply to that patient but there are definitely a set of standard questions that you start with that give you a good clue of what do I need to ask next.

[Dr. Gopi Shah]
Then what's your exam like?

[Ashley Brown]
With the exam after asking some of those questions, I feel like the whole time we as speech therapists are pretty good at looking at the whole patient. We are very holistic in our approach to any dysphagia, especially infant dysphagia. The whole time we are observing posture, tone, we do tone check, oral motor exam on the baby and not just focusing on the mouth. We're looking at trunk support. We're looking at how did the parents hold the baby during a feed. That's where we start when we delve into the oral exam. Again, we're looking at tone, but also range of motion, integrity of the structure.

[Dr. Gopi Shah]
Then do you watch them feed every time when they're with you?

[Ashley Brown]
Yes, we have instructions when they are scheduled for an appointment that hopefully they are hungry enough. We say for a snack, once you get a baby over a tipping point of so hungry, it works against us a lot of the time that they don't want to eat because they are so mad at that point. Yes, we do ideally observe a feed. Now, we do have some infants that come in that are NPO so that's a different exam but we observe a feed. During the observation of the feed, we are looking at the oral motor skills, the feeding pattern, the swallow pattern. We are looking at are they self-regulating? Are they pacing themselves during the feed? What does the coordination look like in terms of the suck, swallow, breathe pattern?

We know that small infants, they're obligate nasal breathers, so they suck, swallow, breathe, suck, swallow, breathe. If they are not pacing themselves and get into this bad pattern, you know, you're going to choose breathing over eating, and we get into some bad moments then if we're not coordinating the suck, swallow, breathe. You breathe when you should be swallowing. Those are all things that we look at during the feed.

[Dr. Gopi Shah]
How do you know which babies you're like we're going to do some feeding therapy or, hey, we need to do further workup or further imaging or testing?

[Ashley Brown]
So sometimes it's hard to tell is this just strictly a feeding therapy kit or do we need an instrumental because the great majority, if you look at the research, anywhere from 80% to 90% of aspiration is silent. They're not going to give you many cues that they are aspirating. You have to take some other cues from them. Given the comfort level, are they frequently pulling off the bottle? Do they sound a little wet, gurgly? Is there some sort of respiratory history that is the reason they were sent to us? Then that's where we would go for an instrumental.

Sometimes the families get into us and it is just a utensil change of maybe they are overloading baby with a too fast a flow nipple, and we just need to back them down a little bit. Sometimes they just need strategies to pace baby. I think it's always a good idea to start with the bedside and a speech therapist observing a feed so you are not getting into unnecessary exposure to radiation with a fluoro swallow study. Those are some of the clues that we take. Infants don't cough. That's not a-- small infants, that is not a reflex quite yet when they're very small, that that develops over time. That cough is not something you should rely on as a clue that they need an instrumental.

[Dr. Gopi Shah]
Well, as we start to wrap things up, do you have any final tips or pros? I mean, these are hard patients and like you said, there's a whole family aspect to that. You're looking at everybody and feeding such an important-- especially for growing and quality of life that is so valued as part of life, if you will. Do you have any other final pearls for us or things that we should be thinking about, or how we can make our practice better or how we should be looking at these kids differently?

[Ashley Brown]
Dysphagia is very difficult. There are days that I wonder why I do this all day, every day, but you get those.

[Dr. Gopi Shah]
It's so hard. It’s so hard.

[Ashley Brown]
It is but you get those small victories and it makes it all worthwhile but it is very difficult because there are probably more times than not, I would have to say is we often had to tell the families I don't know, and I don't know why. I think it's okay to say I don't know. We're so afraid to not have an answer for families and that's why they come to us. They want an answer but so much of it is unknown, and you are there to support them through the journey which means they may be with you for several years, especially in pediatrics.

It's hard to tell a family I don't know. We've put you through therapy, we've done a DLB, we've injected a look you know a deep notch for laryngeal cleft and nothing is working. Sometimes maturation is just our best friend. We definitely see that, that it just takes them a little time developmentally when we're looking at maybe now, they're walking, maybe now they're running, we have better core support, we have better neck control. Sometimes maturation is just our best friend in terms of feeding and swallowing and that's a hard thing to tell a family.

That's a hard thing to admit to yourself that you don't have the answer, but sometimes you're not going to, a lot of times you're not going to in pediatrics. Feeding is very emotional. You think about bringing this baby home and your only job is to keep them alive, and that is to feed them, and it is such a bonding emotional experience for Mom and Dad, especially when me a mom is trying to breastfeed and she's having difficulty with that. You need to remember especially when it comes to breastfeeding evaluations, tongue-tie evaluations that Mom is also your patient, and where a multidisciplinary including lactation and speech really come into play there because maybe baby is doing okay but mom needs help with her supply.

There are mouth and you know nipple mismatches and problems there that your lactation friends can really help you with positioning baby for optimal feeding. Mom is your patient at that moment too, it is not just baby. Like I mentioned when we're thinking tongue-tie we need to think function, just not how it looks, and we'll tell you a lot. These are very difficult evaluations and they can be very frustrating, but I think as long as the families know that you're really trying to help them navigate this very tough part of their life, because it seems like our parents are okay with their kid not walking.

They're okay sometimes even if they're not saying as many words as they like, but feeding is such a family community-based activity, we take such pleasure from eating. Even if the child is not showing the parents that they really have any interest in eating, that's a very hard thing for people who eat okay to connect with because we take such pleasure from eating. We're coming up on Thanksgiving so I mean that is what we base a lot of our celebrations and holidays around, so if you are the family that has that one kid that doesn't get to participate in that that is very difficult.

I think that that is why a lot of us in terms of our feeding therapy colleagues try not to go this NPO route. We try to give the family something because they will say “I just want him to have some icing on his first birthday so I can get that smash cake picture.” Is that something we're really taking away from families because there is a big mental health component around this as well.

[Dr. Gopi Shah]
I think that's a great point. Ashley, thank you so much for taking the time to talk with me today, and more so for just answering all my questions all the time and helping me with these patients. I find them to be truly difficult and wanting to make sure because there's so much at stake that we're doing the right thing. Thank you for being such a resource and my partner in this. I appreciate it.

[Ashley Brown]
Yes, of course. I would always rather be there to answer those questions and make sure the kids get what they need than people trying to blindly walk through this journey with these families for sure.