Feeding and Swallowing Interventions for Kids with Dr. Elizabeth Sinclair

Feeding and Swallowing Center | CHP.edu

Eosinophilic Gastrointestinal Diseases | CHP.edu

Pediatric Feeding and Swallowing | American Speech-Language-Hearing Association

What is dysphagia? | NIH National Institute on Deafness and Other Communication Disorders

Eosinophilic Esophagitis | National Organization of Rare Diseases (NORD)

Eosinophilic Esophagitis Causing Dysphagia: A Rare Entity in Adults, A Case Report and Review of Literature | NIH National Library of Medicine

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Voiceover: This podcast is for informational and educational purposes only. It is not medical care or advice. Clinicians should rely on their own medical judgements when advising their patients. Patients in need of medical care should consult their personal care provider. Welcome to "That's Pediatrics", where we sit down with physicians, scientists, and experts to discuss the latest discoveries and innovations in pediatric healthcare.

Dr. Arvind Srinath: Hi, everybody. Welcome to That's Pediatrics. I'm your co-host, Arvind Srinath.

Dr. Amanda Poholek: And I'm your co-host, Amanda Poholek.

Dr. Arvind Srinath: Today's guest is Dr. Elizabeth Sinclair and the subject is feeding and swallowing clinic at UPMC Children's. Dr. Elizabeth Sinclair is a pediatric gastroenterologist and the medical director of the Feeding and Swallowing Clinic and co-medical director of the Center for Eosinophilic Gastrointestinal Diseases Center. She is also an assistant professor of pediatrics at the University of Pittsburgh School of Medicine. Dr. Sinclair's clinical and research interests include eosinophilic esophagitis, feeding disorders, foreign body ingestions, and advocacy. Welcome Dr. Sinclair.

Dr. Elizabeth Sinclair: Thanks for having me.

Dr. Srinath: Can we start off this podcast by you going over where you're from, what brought you to Pittsburgh and how you got interested in feeding and swallowing in children?

Dr. Sinclair: Sure. My education has been taking a tour of the United States. I was born and raised in Chicago. I did my undergraduate and medical school in Boston. I did my pediatric residency in Oregon, and then I did my pediatric gastroenterology fellowship in Atlanta. And then after moving all over the country, I was looking for a place to settle down after having a baby during the pandemic, and Pittsburgh is halfway between my parents and my husband's parents. My parents are in Chicago, my husband's parents are in New Jersey and UPMC Children's was looking for somebody to help build the Eosinophilic Gastrointestinal Diseases Center, and it was a good fit because that's what I'd studied in fellowship.

Dr. Srinath: Fantastic. Can you tell us, that's a lot of traveling, in a short period of time. Can you tell us a little bit about how you trained to specialize in feeding and swallowing disorders in children?

Dr. Sinclair: Sure. It was really during my fellowship that I got some specialized training. There was a feeding and swallowing center in Atlanta, and I spent a lot of time with the doctor who specialized and headed the center down there. And I was really interested in eosinophilic esophagitis and eosinophilic gastrointestinal diseases. And there's just a lot of overlap between those diseases and kids with feeding disorders. And so it was kind of a natural transition for me to join the feeding team here.

Dr. Srinath: That's fantastic.

Dr. Poholek: Can you tell us a little bit about, sort of some of the feeding and swallowing disorders that children can have and how they might present. Sort of what are the typical patients that you see in your clinic?

Dr. Sinclair: Sure. It's actually really broad. It can be anywhere from premature babies from the NICU who are just immature and are not able to fully take their diet by mouth. We have a NICU transition program that our nurse practitioner, Victoria Powell, has partnered with the NICU, to have those patients who are discharged with a nasogastric tube to transition to eating by mouth. It can be children who have abnormalities in their throat, essentially, where they're swallowing instead of going into the esophagus, the liquids that they swallow go into their lungs.

And we work with ENT doctors – ear, nose and throat doctors – speech therapists, and we partner with the cleft team as well. And so there's lots of different kinds of dysphagia, which is a swallowing disorder. It can occur in the upper area, difficulty with chewing, if it's an older child. You can have problems with swallowing and you can have problems with just picky eating too. We have children with developmental delays and autism who are very selective in what they eat. And so our clinic includes a provider which is either a pediatric gastroenterologist or a physical medicine and rehabilitation doctor. You see one of those providers, depending on if your needs are going to be more GI related or less, and then you always have an occupational therapist, a speech therapist, and a dietician. And then when needed, we also have lactation consultants because some of our patients are also breastfeeding, and we have behavioral therapists as well.

Dr. Poholek: Wow. That's incredibly broad and comprehensive. It sounds like actually a huge catchment.

Dr. Sinclair: Yes. We take care of infants as young as three weeks old and children as old as 26 and they can be developmentally normal. They can have complex medical conditions. They can have developmental delay, they can have behavioral problems and they can have main swallowing issues or they can have motor issues with chewing or they can be normal in those aspects and just have really picky eating or they can have eosinophilic esophagitis and they've developed picky eating because of their medical disease.

Dr. Srinath: You're reading our minds in terms of our next query is, how do you find out where this disorder is or what type of disorder they have and what type of therapeutic options do you have for these patients? And just to follow up, if I'm a pediatrician in the community, how do I refer specifically to your center or can I?

Dr. Sinclair: Sure. We are available on the website and the main number to contact our team is 412-692-FEED.

Dr. Poholek: So easy.

Dr. Sinclair: Yes and you can speak with our scheduler or even our nurse, if you have specific questions as to which team you think is more appropriate for the child you're referring. What was the other question?

Dr. Srinath: What type of diagnosed diagnosis? I'm sorry, what kind of-

Dr. Poholek: Evaluation.

Dr. Srinath: ... diagnostic evaluation or capabilities do you have in therapeutic options do you have for these patients?

Dr. Sinclair: Sure. A typical visit looks like this. We walk your patient back and we take a thorough history. Our rooms are actually unique in which we have a large room and we also have an observation room behind. And so half our team is able to sit behind a mirrored glass wall, so we're not overwhelming the patient with four or five providers in the room because who really wants an audience when they're eating their meal. We take a thorough history, usually from infancy to now, as to how the patient bottle fed or breastfed, how they transition to solids, how they're doing with solids now, what they're eating now, what the parents are seeing?

We ask them if they're gagging or choking with feeds, we ask them if they're picky, we ask them if we think there's issues with chewing and then we ask them to eat. And sometimes I leave the room and I switch and have the occupational therapist come in. It really depends on the age of the child and the concern we're having, as to whether the speech therapist or occupational therapist has more of the focus. And so we look for things like choking and gagging with feeds. We look for immaturity with chewing. We look for lack of chewing. We have some kids who shovel food in their mouth and just swallow it down.

And we look for other behaviors, for a picky eater, if they'll smell the food, if they'll touch the food, if they have trouble with messiness. And we ask the families to always bring preferred foods and foods that they don't like as much with a variety of textures and temperatures too, we'll heat up a meal if they like warm food. And then we also have them bring the bottle if it's an infant, that they normally feed with and we have a variety of other bottles there. And we sometimes trial them with thickened feeds as well, if that's been indicated. That's another way a patient can come to us, they'll complete a swallow study that was recommended by one of their providers and they'll require thickened feeds and they come to our clinic to follow up on that or to be taught how to thicken their feeds.

Dr. Poholek: How long does a typical patient stay with your clinic? And I'm sure this varies depending on sort of what is going on with that individual child. It sounds like there are some kids who maybe have therapy for a short period of time and then others that are followed longer term and then kind of follow up question. I really wanted to dive in more about eosinophilic esophagitis and eosinophilic gastrointestinal diseases, if you could share with us a little bit more about those two things.

Dr. Sinclair: Sure. Our clinic is primarily an evaluation clinic. You get a main evaluation by the large team, and we determine if you need further evaluation like imaging, like a swallow study or an esophagram or an endoscopy to look for mucosal reasons for your feeding disorder, or do you need to see the ENT doctor to see if there's a problem in your airway. You get that evaluation and we also recommend therapy. And some of the therapy, it depends on your location, is done at UPMC. Sometimes it's done by early intervention. Sometimes we're referring you to folks who are local because we get kids and families coming from three, four hours away. And if they're recommending a weekly therapy, that's maybe not best done at the main hospital.

But we usually have them follow up. About a quarter of our patients that we see are seen in follow up, because they'll get a reevaluation to see if they're making progress in terms of their feeding disorder. Sometimes it's a reevaluation of their swallowing. Sometimes it's progress in terms of their picky eating. And it really all depends on what their main issue is. But usually, the visits is to parse out which therapy you need, if you need all of them, if you need medical therapy, if you need speech therapy or occupational therapy, or if you need a combination of those things. And then if you have a primary GI problem or are G-tube or nasogastric tube fed, we sometimes bring you back to help manage those feeds and adjust them as a child grows because our dietician is a key part of making those adjustments.

Dr. Srinath: I love this overlap and you stressed this and so did Amanda too, between intestinal diseases that cause intestinal irritation, or even structural abnormalities of the intestine and how, despite the fixable or addressable component of that, that some of these patients may have overlapping feeding disorders. As a pediatrician, I can't imagine how confusing or difficult it can be to kind of sort that out. Are you ever in the position when, in part of your recommendations, you're like, "Look, I see a few red flags here to suggest there could be another organic process going on." And are you ever referring back to, for example, the gastroenterologist in your group?

Dr. Sinclair: Sometimes. I'd say most often, I'm recommending further recommendation, I follow up myself, because feeding disorders, there's no magic wand that you can wave to make a kid start eating. It's one of the few things that kids really have control over and putting pressure on them, makes it worse. And so once a child's developed a feeding disorder, it really takes a lot of patience and a lot of time. It can take weeks, to months, to years, to get a kid eating, "more normally," even if their medical disease is under control. I'd say most of the time, unless I have a strong concern for a medical GI disease, that's kind of outside my specialty, I'm ordering their studies and following them out myself.

Dr. Poholek: What is eosinophilic esophagitis, in fact I got that backwards there.

Dr. Sinclair: I know, it's a mouthful. Eosinophilic esophagitis, we call it EOE for short, is a disorder where there's inflammation and irritation in the esophagus. We don't know the cause directly, but it is, we think triggered by allergens, sometimes foods, sometimes environmental allergies, but allergy testing does not predict that trigger. There are kids who are completely G-tube fed, don't take anything by mouth and still have this disorder.

That's how we know that it's not entirely due to foods. It's much more common in boys. We're not sure why. And it's much more common in kids who have a history of atopy, which includes eczema, food allergies, environmental allergies, and asthma. And it's more common if there are family members with those kinds of disorders in the family. It's a little more common in kids with celiac disease too. And those kids don't present with pain, most oftenly. They present with feeding difficulties. In fact, feeding difficulties are more predictive of having EOE, than the other medical conditions that I mentioned. It's more common in kids with autism as well, and we're not sure why.

Dr. Poholek: Aha. Interesting. It's related to atopy and food allergies and allergies, it suggests sort of inflammation driven and sort of immune mediated.

Dr. Sinclair: That's correct. And so the inflammation consists of eosinophils, which are a type of white blood cell related to allergy that get into the esophagus. In a normal person, you should have none there at all, they don't belong there. But whatever triggers EOE, causes these eosinophils to congregate in the area and they cause inflammation and irritation, which results in kids having feeding difficulties. Sometimes kids take a really long time to eat. Sometimes they're drinking a lot of liquids. Sometimes they get really picky, way pickier than a typical toddler.

You'll have a kid who started eating solids normally, around age one or two, and then they just stop eating a lot of foods that they used to eat, with really no explanation. The more typical signs that people are used to, which is a food impaction, where people actually choke on their food and cough it back up, happens in older kids. Younger kids are much more likely to present with non-specific feeding difficulties and it can sometimes be chalked up to behavioral issues. And they don't always have difficulty growing because they adapt, they start drinking their calories, they start eating foods that don't bother them and they can't really express it or tell you that it's uncomfortable because it's not painful. Even older kids, they have a real difficulty describing the discomfort.

Dr. Poholek: Interesting. Are there any medications? Some allergies and atopy can be treated with steroids. Are there any sort of therapies or biologics that have been shown to be useful for EOE?

Dr. Sinclair: Yes. There are now four treatments available and one just became available this month, which is very exciting. The first one is proton pump inhibitors, which is a kind of acid blocker. Blocking the acid helps improve symptoms because it helps prevent the acid from getting on the already irritated esophagus, but it also blocks the actual inflammation pathway, which different kinds of acid blockers like Pepcid or famotidine, don't help with. It helps in about 30% of patients. We try it for patients with, I'd say mild to moderate disease, but it doesn't help most of the time. It doesn't put kids into remission.

Topical swallowed steroids, which is also a mouthful, is the word that we use for the steroid treatment. It is most similar to the idea of putting steroid cream on your eczema, but because you need to get it on your throat, you usually take a liquid and you have to mix it into a slurry, so people will mix it with chocolate syrup or cocoa mix or Splenda, so that it's a thick, fairly uncomfortable slurry, so that when you swallow it, it sticks, because that's the goal. You're working against gravity, saliva and the food that you're eating all day, to decrease the inflammation, at a topical level. And those steroids are not absorbed by the body and don't cause all the side effects that people worry about when you're taking steroids for generalized swelling or croup, for example, in an oral steroid, because it's considered topical.

The third treatment type is dietary. You can eliminate foods from your diet and it can treat it. But again, there's no testing that will tell you what will work, so it's a little bit of a guessing game. Through a lot of research, we have named a top four foods. Dairy's the biggest, we don't know why, but dairy's the biggest and it's a real discussion with the family as to what's appropriate for their child. Because if you have a child who's already super picky, removing the biggest source of fat, protein and enjoyment of eating from their life, is a big decision. We have a lot of families who don't want to do medicines because they want to take the more natural approach and have something that has less, "side effects," but they're usually not thinking about the behavioral side effects of removing an entire food group from your life.

And most families report that removing dairy from your life is more difficult than removing gluten from your life, if you have celiac disease, because it's just in everything and it's a food that really gives people joy, people love cheese, people love ice cream, people love pizza. And taking that out of your life is a big deal.

Dr. Poholek: Yeah, especially kids.

Dr. Sinclair: Right. And then the fourth treatment is Dupixent. That's a biologic and it just got approved for children and adults over 12. I'll be honest, we don't have a ton of experience prescribing it yet, because it literally got approved three weeks ago, but we're working on it. And we know that it works in some families and children and it has been approved for eczema and allergic asthma, so we know that it's safe. We just haven't used it broadly for EOE yet.

Dr. Poholek: That's exciting.

Dr. Srinath: With these therapies, I can imagine you have a huge capability to treat the underlying disease processes in many of these patients with overlapping feeding difficulties with their organic process here. What typically happens to these children after their underlying disease process is treated, to their feeding difficulties?

Dr. Sinclair: They tend to get better faster than a kid who doesn't have an underlying medical issue.

Dr. Srinath: Okay, that's great to hear.

Dr. Sinclair: I've seen a number of toddlers who got diagnosed with EOE, were treated and their feeding difficulties improved and completely went away within a year. Whereas a kid who didn't have an underlying medical issue, they had severe behavioral issues, can take years.

Dr. Srinath: And Amanda alluded to this first with regards to the novel therapies that you have. What future plans do you have for this Feeding and Swallowing Clinic, and since it's been really nicely intertwined here, the Eosinophilic Gastrointestinal Disorders Clinic?

Dr. Sinclair: We're hoping to bring more regular behavioral therapy, because right now, we're referring about a quarter of our patients for behavioral therapy, but certainly more than them would benefit from it. Honestly, almost any kid over 12 months who is having a feeding disorder, is going to have some negative feeding behaviors, that probably need to be addressed. But we limit it to what we have available and to the more severe ones right now. We are discussing some mini clinics in some of our outreach locations. We're in touch with some therapists in Harrisburg, and I think somebody in Hamot, so that they have all of our materials and we're able to communicate with them about patients that they're caring for.

And then for the community folks, we are going to have a conference in 2023. It used to take place, I think it last took place in 2018, and we invite all of our local therapists and general pediatricians to the conference. We haven't decided on our topic yet. We just got the date locked in. It's going to be September 16th, so put it on your calendar. It's going to be a one day conference. And the model they last used that was most successful was they're going to invite a provider and a therapist to partner on topics or a provider and a dietician and address certain aspects of each of those topics. It's going to be really exciting to bring the whole community together, in terms of our feeding clinic.

Dr. Poholek: It's-

Dr. Srinath: Go ahead.

Dr. Poholek: I was just going to say, what would you say are sort of some of the biggest challenges that your clinic faces or that you as a provider, feel like you face? What would you want sort of our listeners to know about either the Feeding and Swallowing Clinic or these disorders, more broadly?

Dr. Sinclair: It's really about patience and it's really about following your child's lead. We can give a lot of guidance and therapy, but it takes time, it takes practice. We don't expect a child to learn to ride a bike in one day or learn to walk in one day. Relearning how to feed properly, takes a lot. There are many, many muscles involved.

Dr. Poholek: Then on that note, are there any sort of resources that you're able to provide to parents? Because as a parent, it's incredibly stressful, I'm sure as you know, that when your kid is not eating and you don't know how to fix it. Are there resources to help parents navigate this level of patience and time and sort of the consistency that I'm sure, has to be provided at home, to sort of manage these very difficult problems?

Dr. Sinclair: I'd say it's really the magic of our therapists because they are available. Usually when they're recommending therapy, it's going to be once a week or twice a month, it's going to be frequent, and there's a lot of modeling that goes on during those visits, so that, if a child has sort of a negative association with whatever they're trying to eat, let's say it's a new texture, the therapist can help model so that you don't freak out. And that you say, "This isn't choking, this is gagging. We can tolerate this and we cannot get upset about this," and let the child try to work through it. Or if they do have an actual choking episode, like, "This is what you do, this is how you respond." And so it's really knowing when something's dangerous and knowing when you can let the child continue to practice and make a mistake in a safe way.

Dr. Srinath: Well, Dr. Sinclair, what you are doing is really addressing a problem that as Amanda brought up, it's agonizing for families. And because it's that exact loss of control that we all keep trying, and that there's probably a tug of war of it too. And I would say what you have here is super unique, the infrastructure, your abilities, and the plans, is just amazing and thankful. We're so thankful for what you do.

Dr. Sinclair: Thanks. I'm really passionate about it. I always joke with folks that this is what separates us from the animals. We choose what we eat. We eat for pleasure. It's one of the things that make us human and that's something I want to preserve and support in children.

Dr. Poholek: Yeah. Thank you so much for your time today.

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