Rob Steele, MD (Host): Welcome to Pediatrics in Practice, a CME podcast. I'm your host, Dr. Rob Steele, Executive Vice President and Chief Strategy and Innovation Officer at Children's Mercy, Kansas City. Before we introduce our guest, I want to remind you to claim your CME credits after listening to today's episode. You can do so by visiting cmkc.link/CMEpodcast and click the claim CME button. Today we are joined by Dr. Sara Gould to discuss avoidant restrictive food intake disorder. Dr. Gould is a Board Certified Clinical Child and Adolescent Psychologist and Certified Eating Disorders Specialist at Children's Mercy, Kansas City and Associate Professor of Pediatrics through the University of Missouri, Kansas City. She is the Director of the Children's Mercy Eating Disorders Center and an Adjunct Researcher at the University of Kansas. She graduated from the University of Kansas Clinical Child Psychology Program in 2011 and then completed a postdoctoral fellowship focused on eating disorders at Children's Mercy.

 Dr. Gould provides individual and family therapy to children and teens and their families, as well as supervising psychology and medical trainees, and is passionate about partnering with the community to better identify and treat eating disorders in young people. Dr. Gould, thank you for joining us today.

Sara Gould, PhD, ABPP, CEDS: I'm so happy to be here.

Host: You know, I was reading some of the notes about you. You're clearly a family person. I understand you're heading to Colorado sometime this summer to go visit family.

Sara Gould, PhD, ABPP, CEDS: I am. Yeah, I got lucky that that's where my parents decided to retire.

Host: Oh, very good. Well, what they say about Colorado is something like over 300 days of sunshine. That's a good, good time to head out that way. Maybe we'll touch on that later in the podcast. You know, I have to tell you, as I was preparing for this one, the acronym ARFID, I'm embarrassed to say I, I had not heard before. I'm certainly aware of avoidant restrictive food intake disorder, but never that acronym. So I, I presume that is a pretty standard way to refer to it.

Sara Gould, PhD, ABPP, CEDS: Sure. The full diagnosis name is a mouthful. So we throw ARFID around much more easily. So we tend to stick with that.

Host: Very good. Maybe that's a good segue. Why don't we jump right into it? And, uh, can you explain to our listeners what is avoidant restrictive food intake disorder and, and maybe what are some of its core components?

Sara Gould, PhD, ABPP, CEDS: Absolutely. It can begin at any age, but predominantly begins in early childhood or those early elementary years. And it's a way to describe when individuals have a selective diet that is not based on body image concerns or concern about weight, and it's not related to a medical condition or physiological symptoms.

It's some sort of difficulty that really resides in the sensory system and or emotions, and it's causing problems. So it can impact kids growth, it can cause nutritional deficiencies, or even when those things are in an okay place, it can make interacting with the larger community really tricky.

Host: Yeah, so, for general pediatrician who's listening or maybe even parents that may be listening, can you give us a flavor? What's the difference between that, restrictive eating and just being picky that, you know, all parents have to deal with.

Sara Gould, PhD, ABPP, CEDS: Absolutely. We get that question a lot and I understand it. We also have families that get a lot of advice for picky eaters that really don't apply to their pretty restrictive kiddos, so it gets complicated. The biggest differences are when a child is a picky eater, they still are growing just fine.

So they can meet their needs met, even through less variety than most kids have. And in most situations, whether it's a restaurant or a family gathering, they can find something that they're comfortable eating. Another difference is they'll eat if they get hungry enough, even if it's not what they would like to be eating.

With our restrictive eaters, that's not what we see. So we do see those physical complications and social impact. They are in situations where they truly can't find anything to eat that they can tolerate, and they won't eat despite how hungry they get because the experience of eating their non preferred foods is so aversive that that overrides the hunger.

Host: Yeah, boy, you mentioned the social impact. Of course, I think the, it's a natural assumption that if your suffering from that disorder, there are going to be physical, potential physical impacts, but maybe we could focus a little bit. What, what do you generally see from a social impact, with regard to this diagnosis? Not just maybe with the patient, but maybe the family as well.

Sara Gould, PhD, ABPP, CEDS: Sure. So sometimes it comes out with kids on a baseball team, for example, and the tradition of the team is to go get pizza after every game.

Host: My favorite part. Oh, part of it. I still dream about that.

Sara Gould, PhD, ABPP, CEDS: That's why most kids do sports, right?

But for these kids, it can be, I can't go. I can't go into that environment. I can't find anything to eat at a pizza place.

So I have to either go and be really uncomfortable and get a lot of questions about what I'm eating or not eating, or I have to miss out. And it's a parallel sometimes for families too. Sometimes they are less involved in their communities than they would prefer to be because so many events involve food.

And so they can't just show up to a potluck. They have to prepare ahead of time to bring foods that their child can eat in that setting because they can't be confident they'll be able to find something there.

Host: And when you see those restrictions, are these, restrictions that are plainly obvious that they're incredibly restrictive, or do you see also patients that maybe aren't at face value doesn't seem that restrictive and yet you have the social impact because of it?

Sara Gould, PhD, ABPP, CEDS: So most kids, it is obvious in one way or another. Two of the most common presentations are either due to sensory sensitivities. So we have kids that will only eat crunchy foods, or only will eat mushy foods. And then another is fear of aversive consequences, so fear of choking or fear of throwing up, things like that, fear of pain. Generally when that happens, they've limited their diet and are fearful of trying new things because they're sticking with the things they are absolutely confident won't create catastrophe, basically.

The more subtle presentation can be lack of interest in eating. So, kids who just don't have internal hunger cues, that don't feel satisfied when eating, and therefore tend to eat less, which leads the body to adapt in ways that feel uncomfortable if they eat larger volumes. And that might be more subtle because it's not that they're staying away from variety or from types of food, it's really that the difficulty is in the amount of food they're able to tolerate.

Host: Wow. So, I imagine that when you see these patients, there is a, I'll say halo effect of dysfunctional behavior within the family itself. Cause I, there's going to be compensating mechanisms, I would imagine. Do you see sort of commonality, other challenging kind of dysfunctional behavior within the family unit because of it?

Sara Gould, PhD, ABPP, CEDS: Yeah, so if you think of what it means to be a parent, our very first success is being able to feed our kids and soothe our kids. That's all it's about. So if you have a child who you can't feed and who you are seeing not grow, that is terrifying first of all and often can involve a lot of shame for families.

Because our identities as parents can be so powerful for us and so important. And so if you are seeing your child not grow or be anemic or whatever the situation is, it is very natural to accommodate because you're really just trying to keep your child alive, let alone healthy. And so many, many parents will parent in ways they never expected to around food and mealtimes because this is not the situation they expected to be in with their children. And that is part of what we are doing and why we utilize a family based approach is because we have to help the whole family understand what is happening, how we got here, and that supporting the child in avoiding is going to increase their avoidance even further over time.

Whereas, if we can challenge in supportive ways, then we can really get the ball rolling to where they can be better able to function in the world and in a much more healthy place.

Host: I can imagine just how, challenging that would be, particularly at a original presentation of trying to just get a handle on that. Before we get into treatment, maybe you could give listeners a flavor of, are there certain populations in which this is more prevalent?

Sara Gould, PhD, ABPP, CEDS: Sure, so if you think about the three major subtypes, we've got the sensory kiddos, we've got the anxious kiddos, really that fear of what will happen if I eat, and then that disinterest piece. What we see is in conditions that tend to have more sensory sensitivities, like autism spectrum disorders, it tends to be more common, tends to be more common in kids who are just generally anxious.

And in particular with medical comorbidities, it is much more common in kids with GI conditions where they have had the experience that eating goes wrong in some way.

Host: Sure. Yeah, that makes total sense. So what about treatment? So how do you approach the family? It sounds like not as a unified, perhaps as of a presentation of this diagnosis as one might otherwise think. So what's your approach?

Sara Gould, PhD, ABPP, CEDS: So the modality we use is called CBT for ARFID, Cognitive Behavioral Therapy for ARFID, out of Mass General. The common components across the board are one, a lot of education. What is ARFID? How did this person's ARFID develop? What are the maintaining mechanisms that's keeping it going?

Because those are really going to be the target for treatment. So getting everybody on the same page and also helping the family see that there are very logical reasons why they landed in this place and it didn't happen overnight. Treatment is not going to take one session. But that we can get there together.

 Another part is prioritizing weight gain and physical restoration if those factors are at play for a child. Because that really is foundational safety for the moment and getting development back on track as early as possible is important.

And it will facilitate the other pieces. And not all patients need that. Some are at a normal weight. Some haven't been dealing with ARFID very long. Maybe they ate great until they choked on a slice of apple three weeks ago and now are eating nothing. So they're not as physically compromised and yet really do still need that intervention.

And then another core component for everyone is exposures that challenge whatever the avoidance is. So the exposures themselves look different because we're matching it with the function of the avoidance, why it came to be. So for example with the kiddo with sensory sensitivities, we're starting with their preferred foods, and then we're taking steps to practice, to experiment, to gain knowledge and practice with things that are a couple steps beyond what they're currently comfortable with. For kids with the anxiety component, we're talking through what are your specific fears, and then we're designing situations that directly challenge those fears in the context of what we describe to kids as experiments. Let's make a prediction. Let's try it out and see what happens.

For those with lack of interest and the difficulty with volume and tolerating that that comes with that presentation, we do exposures to grow more tolerant, more accepting of some of the uncomfortable physical sensations that will occur; bloating, perhaps nausea, uncomfortable fullness, if these kids suddenly are eating an amount that truly will support their growth.

So we're practicing all of that in session. We're giving them tools to tolerate discomfort. We're also often giving caregivers tools to tolerate their own discomfort as they see their kids face these challenges so that we can work through that together. And then we're assigning those exposures as homework to continue to get that practice in between sessions.

 So those are the biggest pieces of treatment. And then towards the end, we may not tackle every new food in session, but we're ensuring that families have the tools and the understanding they need to continue that work without us.

Host: Yeah. So I would imagine, many of these parents are coming in somewhat desperate because they're not sure what is going on. And, as much as I've had less recognition of ARFID, having that diagnosis is probably to some degree, a comfort for parents, cause they know that there's an entity.

Tell me what, when you, once you've begun treatment, you're getting traction, feel like things are beginning to improve. What's the likelihood of relapse or more, you know, challenging, or even separate diagnoses, around eating disorders that would happen after, right? Is it common that, that does lead to other comorbidities or no?

Sara Gould, PhD, ABPP, CEDS: The first thing to remember is the biological predispositions that made it more likely for these kids to develop ARFID don't disappear. And so it's something that needs some management, some monitoring over time, but families can do that. They can notice if kids are starting to drop foods out of their repertoire again and have the skills on their own to be able to step back into that. So that is our goal, is that we can provide those skills that even though those predispositions never go away, the skills don't either and they can be implemented as needed. I will say with that question can it lead to other eating disorders?

So losing weight or being underweight for any reason is a risk factor for anorexia. So most individuals who have ARFID do not develop another eating disorder, but they are at higher risk for doing so.

Host: Thank you so much, Dr. Gould, this outstanding overview of ARFID and its treatment options and, and the like. We really appreciate you joining us today. I have to ask you, so you're going to be traveling to Colorado to visit your family.

And I'm sure you're well aware that the, uh, state fossil of Colorado is the stegosaurus, that the state fish is the greenback cutthroat trout. We all know those things, right? Let me ask you this. Did you know that the highest auto tunnel in the world is in Colorado?

Sara Gould, PhD, ABPP, CEDS: I did not. It makes sense.

Host: Yeah, I didn't know, did you know the cheeseburger was invented in Colorado?

Sara Gould, PhD, ABPP, CEDS: I did not.

Host: And the tallest sand dune in North America resides in Colorado.

Sara Gould, PhD, ABPP, CEDS: I think that I did know that one.

Host: Oh, very good. Okay. Well, you can, you can bring those little fun facts to your family when you, when you travel. Dr. Gould, thanks so much. As a reminder, claim your CME credit for listening to our show today. Visit cmkc.link/CMEpodcast and click the claim CME button. This has been another episode of Pediatrics in Practice, a CME podcast. I'm Dr. Rob Steele. See you next time.