By Gene Beresin, Executive Director and Khadijah Booth Watkins, Associate Director

Posted in: Multimedia, Podcast

Topics: body image, Eating disorders

Almost everyone knows a picky eater, either from their own childhood or from their child’s experiences. But sometimes picky eating goes beyond a simple preference for plain pasta.

In this episode of Shrinking it Down: Mental Health Made Simple, Gene and Khadijah sit down with Dr. Kamryn Eddy to unpack the complexities of ARFID —Avoidant/Restrictive Food Intake Disorder. More than just picky eating, ARFID can significantly impact a person’s physical health and social life, leading to growth issues, nutritional deficiencies, and emotional struggles. Tune in to hear more about ARFID, its treatments, and its promising recovery outcomes.

Media List

• Kamryn Eddy, Ph.D. (MGH)
• ARFID (DSM-5)
• NEDA
• ARFID (National Eating Disorders Association)
• Eating Disorders Screening Tool (National Eating Disorders Assocation)

Episode Transcript

SPEAKERS: Gene Beresin, MD, MA; Khadijah Booth Watkins, MD, MPH; Kamryn Eddy, PhD

[INTRO MUSIC PLAYS]

Gene 00:27

Welcome to Shrinking it Down: Mental Health Made Simple. I’m Gene Beresin

Khadijah 00:32

And I’m Khadijah Booth Watkins

Gene 00:34

And we’re two child and adolescent psychiatrists at the Clay Center for Young Healthy Minds at the Massachusetts General Hospital.

Khadijah 00:41

And today we’re going to be exploring an eating disorder that many of us are hearing more and more about, ARFID, or avoidant, restrictive food intake disorder, while many people are familiar with eating disorders like anorexia, bulimia, ARFID is less commonly known, but just as important,

Gene 00:56

and so ARFID, well, first of all, Kamryn, it’s great to see you, and I’ll introduce you, but we’ve worked together for a long time in eating disorders. Just for everybody to know this, ARFID goes beyond picky eating. I’m sure many of you parents and caregivers out there have had picky eaters, and while it’s more commonly found in infants and children, it can affect folks of all ages, and it can lead to significant physical and emotional challenges.

Khadijah 01:27

So, in this episode, we’re going to explore what ARFID is its impact, and what parents should do to best support their children.

Gene 01:34

And here to explore this important topic is Dr. Kamryn Eddy. Dr Eddy is Professor of Psychology in the Department of Psychiatry at Harvard Medical School code and co-director of the eating disorders clinical and research program the EDC RP at Massachusetts General Hospital. Her research focuses on understanding the psychopathology, or the pathophysiology, I should say, of restrictive eating disorders, and using this knowledge to develop and test novel treatments. So, she’s written more than 200 scientific papers, co-author of two books describing her novel art for treatment, including cognitive behavior therapy for avoidant restrictive food intake disorder, children, adolescents and adults and the picky eaters. Recovery book and the third, fourth coming book describing a novel, The novel, cognitive behavior therapy for anorexia nervosa. Her NIH and Foundation funded research includes a randomized control clinical trial of a cognitive behavior therapy AR, what an AR is avoidant, restrictive food disorder for children and adolescents with ARFID and another randomized, controlled clinical trial evaluating physiological estrogen as a novel treatment for females with anorexia and related disorders. Both studies build on her neurobiological research by targeting brain mechanisms through treatment. Dr Reddy is also well known for her longitudinal research, having led an outcome study of anorexia nervosa and bulimia nervosa, documenting recovery for rates over 25 years as her role as co-director of the EDC RP, she provides patient care and clinical and research supervision, doctoral students, pre doctoral interns, psychiatry residents, psychiatry fellows and junior faculty. She provides psychotherapy trainings on CBT, are, locally, nationally and internationally. And I must say, over many years, I’ve shared a number of cases with Kamryn, and I can say that, you know, eating disorders of various kinds are among the most complicated, difficult and probably and have the highest mortality rate of any, that is death rate of any psychiatric disorder. And she is one fabulous clinician, so we’re just thrilled to have you here today.

Kamryn Eddy 04:04

Thanks so much. I appreciate that introduction, and I’m really excited to be here.

Gene 04:08

Did I get everything right?

Kamryn Eddy 04:11

You got it pretty, pretty good. Very well done.

Gene 04:15

Okay, so let’s start with defining what ARFID is, so you know, what are the major signs and symptoms? Let’s let me ask a number of questions, and then you can kind of ad lib. So, we want to know what it is, how what are its symptoms, how common it is, and how is it different than picky eating? So just to give you an example. I remember a really good friend of my kids who are now adults, who lived two doors down, and she’s now a nurse. I won’t say her name, because she’d probably be embarrassed if she heard this, but she was in grade school. She only ate white foods, sure, and. And this was typically Cheerios with milk or pasta, but white pasta, not whole wheat pasta, because if it weren’t white, she wouldn’t eat it. And so, when she would come over, I would say, so which white food do you want today? Okay, now she’s grown out of that phase. But how is something like that, which I’m sure many parents have experienced with their kids, different from ARFID?

Kamryn Eddy 05:27

Yeah, it’s such a great question. It’s one of the ones that we get the most commonly. So maybe I’ll start by defining ARFID, and then we can think about how it how it goes beyond sort of that more typical picky eating. So, our fit is really an eating disorder, so it’s defined by avoidant or restrictive eating. So, we think of that as avoidance of particular kinds of foods or types of foods, and then restriction in terms of volume. So, it’s really limited volume and or variety of intake that can lead to a number of different kinds of problems. And so those problems can be failure to grow, failure to make the expected weight gain or height gain that we see in childhood or reaching low weight. It could be dependence on tube feeds, so that is not being able to take in enough calories to support your body by mouth, and really needing to rely on supplement drinks to get enough calories in. Or it could mean a host of different vitamin deficiencies, and these can be widely variable, and I can give you some examples, like one of the ones that we see occasionally is vitamin C deficiency, and that’s really unusual, you know, where so many foods are fortified. And then the fourth sort of example that could be one of the problems related to the avoidant restrictive eating would be psychosocial problems. And what I mean by that is really like having your eating problems get in the way of your kind of everyday functioning. And this, again, is one of those that’s going to be really variable, but this is one that we see often brings people in for treatment. So this could be, you know, the smallest examples, like not being able to go over to a friend’s house, maybe because you don’t have an accommodating dad who’s willing to get only the white foods for you, but also, you know, not being able to go on school trips in adults, we’ve seen, you know, this really interfering with their ability to get in romantic relationships, or even to miss out on opportunities for advancement at work, because they’re missing out on dinners, etc. So a wide range of difficulties that can be associated with these problems that really go well beyond those problems that go along with just more typical picky eating, and then outside of that, you know, just by definition, these are folks who are restricting or limiting what they’re eating, not because they’re trying to control their weight, so not because they’re trying to keep thin or because they’re trying to reach a thin ideal, which is something that typifies the other eating disorders in our food. The picky eating seems to be driven by maybe a sensory sensitivity, so feeling like, you know, food needs to look a certain way or taste a certain way, or I’m really sensitive to the textures of my food, so I really only want to stick to one I know well, a fear of aversive consequences. So maybe you’ve had a really bad experience with eating one time where you choked or had a vomiting episode, and then got really, really fearful of having that happen again. And then it goes from maybe the index foods or the first food it happened with to then broadening out to being a broader range of foods that get avoided over time. And then the third kind of rationale for under eating in ARFID tends to be people who maybe just don’t have the same hedonic valuation of food, so maybe they don’t enjoy eating as much as others. It’s something that maybe they don’t have the same hunger or fullness cues, and they often describe eating as a chore. They may forget to eat, for example. So, this is kind of what the picture of ARFID is. And I hope the picture that you’re getting in your head is, wow, that’s really variable, because it actually is pretty heterogeneous. As far as an eating disorder goes it doesn’t look any one way. It occurs a lot across the lifespan. It can be people who are low weight, people who are of average weight, people are overweight or obese, and again, you know, males, females. It goes along with a lot of different psychiatric comorbidities as well as medical more morbidities. So, it’s something that we’re really learning a lot more about in this last decade.

Khadijah 09:46

So, it doesn’t, and I that description is really important, because I think we think about eating disorders, and we think about it being related to body and body image, but this is absolute. This is actually not. And so, it’s also like there are many different. Causes. But are there any foods that cause ARFID, like, are there common, fake foods or foods that may cause us in children?

Kamryn Eddy 10:08

Yeah, great question. So let me just clarify for the weight and shape piece. It’s really interesting. So, you know, when we first learned about ARFID, let’s say when it first came out in DSM-5. You know, the language was such that the eating problem, you know, is not it coexisting is not weight and shape concerns. So, you know, there’s kind of, was this expectation that, you know, did these people? Are they, like super normal? They sort of don’t have the normative body discontent that other people have. And the answer to that is no, they could have weight and shape concerns, but that’s not why they’re under eating. That’s not the restriction motivation. So, in folks with ARFID, you know, there really are widely variable foods that are comfortable for people to be eating. In folks with the sensory sensitivity, what we see most commonly is, you know, that sort of like white food diet, like what Jean was just describing, often folks are relying on really heavily processed foods. And you can imagine, you know, one of the reasons for that is that when foods are really heavily processed, often they’re really palatable. They’re often sort of designed to be super yummy, but they’re also really, really, really uniform, and so for folks who have a lot of fear about things being different or novel, knowing exactly what to expect from highly processed foods is really reassuring, and it makes it much easier to continue to have the same foods. Now what you can kind of imagine downstream to is the more you have the same foods all the time, the harder and harder it gets to branch out from what you’re having. So, while it’s not necessarily an etiologic factor, like what’s not necessarily what causes ARFID We do think that once folks are limiting their diet, continuing to limit their diet sort of begets even more limitations and makes it harder to then broaden out from what you’re comfortable eating. You asked that great question, Khadija, of like, what is it that causes ARFID? And I think at this point, we don’t know. We have a model in our kind of framework for understanding ARFID That suggests that there are some biological vulnerabilities. Those could be things like sensory sensitivity, maybe a predisposition to serve low appetite or even a slender body. Could be predisposition to anxiety or maybe other medical or psychiatric comorbidities. For some folks, they’ll have that trauma like I described, trauma related choking or vomiting or anything like that. And in turn, those give way to a series of negative feelings and predictions that people have about food. If I eat that it’s going to be disgusting, that food’s going to make me sick. I’m not hungry anyway, it’s not even going to be yummy to eat. That kind of set of predictions then gives way to the under eating, which leads to the medical kind of problems that we see, the psychosocial problems. And then there’s a feedback loop so that it really keeps people locked in over time.

Khadijah 13:23

What about these kids that just don’t enjoy or want to eat?

Kamryn Eddy 13:28

You know, it’s really, I’m interested that you ask that I find that group to be both one of the most kind of interesting and also one of the biggest mysteries right now. So I would say we’re pretty early in our understanding of ARFID, you know, we’re like, 12 years, 13 years post DSM five, we’re still trying to understand what it is that makes folks not interested in food, because it’s really so different from people with the more typical eating disorders, where I do a lot of my research, but also really different from a lot of just, you know, kind of the world where we’re all pretty rewarded by food. We think of it as something that’s social. We come together around eating, and often we’re enjoying what we’re eating. For folks with that sort of lack of interest presentation, we are trying to understand them better on our team here at MGH, one of the things that we do in our multidisciplinary eating disorders research collaborative group is we do a lot of neurobiological research. Neurobiology research, one of the things that we look at are hormones. And what we’ve seen is that in the folks with ARFID, they’ll often describe I’m not hungry, or I get full really fast, really interestingly, their hormones seem to go along with that. So, we all have appetite regulating hormones that sort of tell us like, okay, it’s time to eat, or okay, like, you’re done. Cool it. Slow down. In folks with ARFID, we find that, you know, our appetite hormone, the one that signals like, when, when’s the time to eat. They’re great. Ghrelin levels are actually kind of like at the normal level. Now you might say, Wait, isn’t that good? Like, shouldn’t it be normal? Actually, I’d say no. For folks who are starving, their ghrelin levels are usually high, and we think of that as adaptive, right? Like, if you’re not eating, you should be getting a higher level of ghrelin to say, hey, eat, eat. But these folks are not getting higher levels of ghrelin at this point, and interestingly, they also have higher levels of CCK. So, cholecystokinin is one of those hormones that actually says, okay, like you’re done, you can stop eating, wait until the next meal. And cholecystokinin levels are also high in these patients, and again, that kind of goes along with what these guys are saying. They’re saying we’re not hungry and we’re full quickly, and their hormones seem to bear that out. So, whether that’s something that could be etiologic, or if that’s something that might even be because of the under eating, we don’t know, and we’ll tell you more as we learn it.

Gene 16:00

So, one thing I was curious about you mentioned sensory integration problems, and two questions about that. One is we typically think of sensory integration problems in kids who are on the autistic spectrum but are there other kids who have sensory integration problems that you would also worry about and if they have sensory integration problems for food. I mean, many of the kids that I’ve seen, they don’t like the way the tag feels on their neck. They don’t like the way their socks feel on their feet, you know. So, do you see a constellation of sensory integration problems, or is it just limited to food?

Kamryn Eddy 16:40

That’s such an important question gene. So, one of the things that we do see is a lot of comorbidities with autism spectrum disorders. And one of the things that’s really interesting is, you know, again, there are data out there now, kind of emerging data that show that ARFID is higher in autism spectrum populations, and that autism spectrum disorder is higher in ARFID populations, so it sort of goes in both directions. But do the sensory problems exist outside of kids having autism spectrum? Yeah, absolutely. So, I would say in our population. So here at the MGB, our group of patients in the edcrp, we see folks who are outpatient. So, we see people who can, you know, come in, and then they go home, and they the most common presentation in an outpatient setting in ours is the sensory sensitivity presentation. What I didn’t say and so this will be just like a little kind of like footnote. It doesn’t necessarily answer your question, but I want to make sure I SAY IT folks with folks with ARFID. These are not three subtypes. So, it’s not like if you have ARFID, you either have sensory sensitivity or fear or lack of interest. Instead, we think of them as kind of profiles. And the reason I use that word is that you can be high in any one of those three kinds of profile presentations, anyone, two or three of them. So some kids will come in with us to us with sensory sensitivity, always having had a lack of interest, and then have sort of acute on chronic, where then they had a really scary, traumatic feeding experience, and that really made their ARFID, you know, much more extreme in that moment, but kind of in answer to your Question, sensory sensitivity is something that we see really commonly in these kids. It doesn’t always tie into the autism spectrum, but it often does. And that question about, you know, is it more general than just food related, it’s something that we’re interested in, and so I don’t have an answer to it yet. I will say we do an interview called the PARTY, the pica ARFID, rumination disorder interview, lovely name the PARTY. In that we ask them about sensory difficulties, for example, like the tags like you mentioned, but also oral sensitivities around tooth brushing and things like that. And at this point, I don’t think we have a clear answer about whether those are globally higher in these kids or not,

Khadijah 19:24

and so, you mentioned the connection with ASD. I’m curious, are there other commonly or common conditions that co-occur with ARFID, or are there conditions that contribute to someone maybe developing ARFIDs?

Kamryn Eddy 19:37

Yeah, so I’ll answer both. There definitely are other common, comorbid, comorbid, co-occurring conditions. So, in terms of the psychiatric diseases that we see quite commonly, I would say anxiety disorders are really common. Anxiety Disorders seem to quite commonly go with the fear of aversive consequences, which probably isn’t a big, big surprise. Um. And we hypothesized that it is actually kind of fear circuitry, fear neural circuitry, and neurobiology that maybe makes folks particularly vulnerable to the fear experience. Others that are common, you know, are mood disorders, and then other of the neuro sort of the neuro divergent disorders. So, ADHD is something that we see really commonly in kids with ARFID as well. And so, your question was whether any of these things sort of preexist, and maybe makes make folks vulnerable to ARFID. I don’t think we have those data yet, but I will say, like one example of something that does occur that could make somebody more vulnerable or in any of the co-occurring GI conditions. So, for medical morbidities, we definitely see co-occurring Gi conditions. These are folks who often present to Gi clinics, maybe with failure to thrive or under eating, but also with GI conditions. So, for example, delayed gastric emptying. One of the things that’s interesting is that for folks who have Gi conditions, sometimes they’re prescribed to go on particular diets for their GI conditions. Sometimes they sort of take the initiative to put these diets on themselves without a prescription, there can be a vulnerability, you know, with these diets to take them to an extreme, and they don’t always, sometimes they’re really well backed, but sometimes they’re not, and that following a diet really rigidly is something that can Make folks more vulnerable. So we’ve seen patients, for example, with celiac disease, who totally appropriately, have cut out gluten containing foods from their diet, but then become really hyper careful, like really way more careful than they need to be, avoiding going out to eat, avoiding eating at a friend’s house, maybe avoiding food even that their parent has made for them because their risk, you know, they’re worried about cross contamination, and so they’ve taken that prescription to an extreme level, and then it does contribute to them having ARFID. So, it’s not necessarily the disease itself, but it’s sort of like the rigid adherence to a diet.

Gene 22:20

So, we’re going to come to the treatment of ARFID. But before we do that, just for the folks out there who don’t have a kid with a very severe condition, maybe you could help us a little bit. So let me just at the at the risk of offending my son, who may be listening, who’s again, an adult and has three kids, but picky eater. So for example, when we would go out to an Italian restaurant, and he loved Fettuccine Alfredo, if there was anything green on the Fettuccine Alfredo, like they put the parsley on the we have to say, put the parsley on the side where he won’t eat his dinner. Now, I know that’s not ARFID, but I mean, are there recommendations that you might give? Let’s start with the lower levels of problems, and then we can move up to the more severe. What should parents be doing when they have kids that are in that situation, so that it doesn’t escalate, and they don’t kind of separate every single bit of food. Because one of the things I worried about is, oh, wait, now it’s the parsley, but soon it’s going to be the parsley, and anything green versus anything white versus anything creamy versus anything crunchy. And so, what do you recommend?

Kamryn Eddy 23:41

It’s such a great question, you know? I guess I would start by saying, you know, one of the things that I do is I end up seeing the folks who are in the more extreme bucket. So, there are a lot of really wonderful people who work with kids who are just typical picky eaters and helping them to expand their diet. I think a lot of what we do with ARFID can be brought down to kids who are just general picky eaters and helping them to be broader. So, I’ll share with you a little bit about my thoughts, and I’ll share them with the caveat that a lot of people in the world, dieticians and otherwise, think a lot about that sort of normative spectrum of picky eaters, and they probably have great suggestions too. That being said, one of the things that I would imagine is we know that there is this principle that once you are narrow with something and you continue to do the same thing, the groove that you are in gets deeper and deeper and deeper, and then it’s even harder to climb into doing something different. And so, what I would say is, you know, that’s one of the things that makes kids with sensory sensitivity, for example, so narrow with their diet and have such a difficult time stepping out of it, like we talked about earlier. They’re relying on heavily processed. Foods. They have you know, orange goldfish, for example, crackers, and they’re not going to have the, you know, pizza goldfish crackers, same shape, same look, probably similar smell, but it is not the same cracker cheese. It’s very similar cheese, very different look, not the same kind of cracker. And they are what I would describe as kind of, at that point, super sensors. They’re really good at they know exactly what they like they and I would describe that, in some ways, as a strength. They know it. They’re experts in their food, and they’re very sensitive to something that’s going to be different for, you know, those of us who are don’t have our food, you know, maybe have like, two or 300 foods that we comfortably eat if we add a new food, we are adding one new food, but we have then two or 300 other foods in our repertoire that we could compare it to. If you are a kid with ARFID and you’re comfortable with five or six foods, you add one new food, you only have five or six other foods to compare it to. So, it is going to feel really, really different. The just noticeable difference is much greater for the kid with ARFID. So, what I would encourage for folks who are bit picky eaters, but really just kind of generally for all parents of kids, is continuing to surround your kid with a lot of different kinds of foods, model for them how to take in a broad range of foods. Have them available at the table. Have them available on your plate, and model eating them and preparing them for your kid. What we often see in adults with ARFID is that they don’t actually have any familiarity with what those foods are, how they look, how they can be prepared, how they can be cooked. And it’s not that they weren’t ever invited into sort of those circles they were when they were little. But then over time, when they continued to say no or it was really difficult, they stopped their parents or their families or their friends, stopped expecting them to do that, and that’s the psychosocial kind of consequence of the picky eating that then gives the feedback to continue the restrictive eating. If I’m not expecting my kid to come down and eat with me at the table, or at least be somewhere in the vicinity and kind of see what we’re eating, then it’s much less likely that they will ever get the practice with that food? So yes, it sounds like your kid’s preference was not to have parsley on the pasta. Totally fine. You know, you’re not going to push it. There’s no reason that they need to have parsley, but it probably is a good idea to have some kind of green or green vegetable somewhere in the vicinity of their plate, maybe not at that meal, but maybe at another meal. So, I think trying to kind of notice those things early on and then build as much flexibility as you can. If he’s good at Fettuccine, fettuccine alfredo, let’s take him to get Fettuccine Alfredo at multiple restaurants, so that at least he builds that flexibility, even if he doesn’t want it with the parsley.

Khadijah 28:00

So now that we kind of have an idea of what to do and what to look for in advance, what do we do as parents when we are concerned about maybe our picky evening has gone to a point where maybe this is our fit. So, you know, we often tell parents that the pediatrician is the gateway to mental health and mental health care, but is the pediatrician, someone who could help a parent and a family with this diagnosis?

Kamryn Eddy 28:27

Absolutely, I think, you know, the beauty and the challenge for pediatricians is that pediatricians are the front line, so pediatricians are always going to be our first go to and they’re really wise, because they see picky eating in kids all the time. So, we know that picky eating is a really normative experience for kids two to six, sort of peaks in that window of time. And then for most people, it goes down. For kids with ARFID It just doesn’t go down. It sort of stays high. And then maybe even, you know, continues over time. Sometimes it abates a little bit, you know, in college or beyond, when folks get more experience with different things, but it doesn’t always. And for folks with ARFID, it often doesn’t. And can, you know, lead to needing treatment in adulthood as well. So, pediatricians can be great resources. You know, they might recommend some of the like lower-level interventions that we’re talking about, like around baby meeting with a dietitian, but they also might recommend sort of parent guidance books. The picky eater’s recovery book that we did is one of them. But that being said, they also can be people who can connect you with mental health providers.

Khadijah 29:38

So, we’re all pretty familiar again, with anorexia nervosa and bulimia, and how bad it can get. And, you know, we, I think we mentioned earlier that anorexia has one of the highest mortality rates, meaning death rates. How bad can ARFID get? Is this also, or could this also potentially be a life-threatening illness?

Kamryn Eddy 29:55

Yeah, absolutely. I would say ARFID, for sure, is an illness that. We want to be really thoughtful about, and certainly one that requires medical attention in the same way that any other eating disorder does. It’s a very heterogeneous illness, as we talked about. So, for some folks, they will have the consequences of starvation and low weight, as we talked about with an which really does increase mortality, premature mortality risk, but not universally so. So, some of the other risks associated with ARFID could be the nutritional deficiencies, some of which certainly can lead to significant medical problems and issues and that need to be followed. But I would say again, we’re kind of in our infancy in terms of understanding the risks associated with ARFID. And so, there are clear medical consequences of ARFID and clear psychosocial consequences of ARFID. And the nice thing is, we do have interventions that can be really helpful for ARFID. So, so I would encourage people to get treatment for it.

Gene 30:59

So, let’s, let’s get to that. What, what, what treatment do you recommend for ARFID, what do you do? And, and, and in addition to that, would you comment on whether medications might be useful, in addition to your, your, your model and, and how does it relate to what we would call exposure Response Prevention therapy.

Kamryn Eddy 31:24

Yeah, so absolutely. Why don’t I talk a little bit about the treatment that Jenny Thomas, my colleague, and I developed. So, we developed a treatment called cognitive behavioral therapy for ARFID or CBT AR and this is a treatment that proceeds. It’s an outpatient treatment. It’s been modified to be used or adapted to be used in higher levels of care settings as well, but generally speaking, it’s an outpatient treatment, about 20 sessions that proceeds through four stages. In the first stage, it’s psycho education, helping families and patients to really understand what is ARFID How do they think about their particular presentation and what’s the model like? What’s the formulation for what might be keeping their specific symptoms going right now, in the second stage, we do psycho education about nutrition, so trying to understand more about why it would be helpful to eat different kinds of foods, why that’s a key part of our diet, and then really doing an inventory of the range of foods that they could be eating to try and make a game plan for stage three, which is the part where we actually do in session practices. Stage three is what we think of as the heart of the treatment. In stage three, we’ll use one of three treatment modules, one, two or three treatment modules that really are designed to target whatever we see as we in the family see as the maintaining mechanisms of the illness. So that is sensory sensitivity, fear of aversive consequences or a lack of interest. And we’ll do a specific set of exposure type treatments that really target that fear mechanism or that mechanism. And then the fourth part of treatment, the fourth stage is really kind of closing treatment and a relapse prevention. We expect that CBT AR will help folks get very well, and for many folks, they will recover from their ARFID, but that being said, we expect that they’ll become lifelong food learners. That’s kind of our goal for people. Our goal is to help them no longer meet criteria for ARFID and to now have the skills to leave treatment and be able to continue to make gains on their own. And so, what we do in stage four is sort of set them up with a roadmap for what are they going to do as they leave treatment. It is an exposure-oriented treatment. So, the heart of the treatment is stage three, where we actually use targeted exposures to help people make changes, and so their exposures are going to be different based on what the maintaining mechanism is. So, for folks who have sensory sensitivity there, we really kind of see the key problem as being a food neophobia. So being really scared about trying something new, one of the things that we know for kids with the sensory sensitivity presentation, just like I know I’ve said now 10 times, because they keep eating the same foods again and again and again, they’re expert in their foods, terrified of trying something new. And so, what we want to do is help them to figure out how they can expand their diet to meet the needs that they have, the nutritional needs or psychosocial needs. And how can we do that in a really nonjudgmental, systematized way? And so, we invite them to be really key partners in which foods do they want to try? How do they want to do it? And then we have them do the foods in session. For folks who have the fear and avoidance piece, we create a fear and avoidance hierarchy with them that helps them step through their fear and really peak with whatever their index food was that caused the scary event. Yeah. For folks with the lack of interest, what we do is we really work to build hedonic appetite. We do this in a couple of ways. We do this by doing interoceptive exposures to physical signs that usually tell their body to stop eating, to help them get more comfortable with those and to build practice with filling their bellies. We also help them to track hunger and fullness, so that they can learn to eat a little bit earlier and stop a little bit later, so that they’re getting more in. And then we also do pleasurable eating. So, I hope that gives you a bit of a picture of the intervention. It’s delivered again in an outpatient way, and we do it in either family supported for the younger patients or folks who need help gaining weight, and then we do it in an individual format for older teens and for adults. You asked too Jean the question about medication. So, I’m a psychologist, so this is definitely outside of my wheelhouse, but I do have the pleasure of working with many strong psychologists and then physicians and I would say, you know, if they’re using medication, it’s often to treat the comorbidities. Sometimes it could be, you know, kind of foot in the door around reducing anxiety. But again, because so much of our intervention relies on helping people to move through their anxiety, we want them to experience their anxiety as part of treatment. So, I’ll pause there.

Khadijah 36:25

So and so are these specialists that that kids and families are going to for treatment. And I guess, and I guess as we’re thinking about treatment, you know, what are the outcomes? Do people recover from our foods?

Kamryn Eddy 36:38

Great question. So, we give treat, we give trainings in our treatment, the CBT for ARFID all the time. Those are available here through the MGH psychiatry Academy, and that’s, of course, available to everybody. But we are also just one example of treatments. There are other treatments out there as well. You know, family, family-based treatment, which we know well for anorexia and bulimia nervosa. It’s been adapted for use with young folks with ARFID. There are other interventions out there as well, so we’re certainly not the only one. In terms of our outcomes data. We have some pretty strong preliminary outcomes data. So, we have, we’ve published a handful of case series looking at the outcomes in open trials. Those have been published from our team, but also from outside teams that we don’t have affiliation with. One recent publication from equip Health published quite a large sample. I think it was like between five and 600 kids. But actually, I don’t want to get the number wrong, some large number, I can figure out what it is. Where they looked at outcomes using family-based treatment, and then also using CBT for ARFID, and they found that people did quite well, which was really reassuring. As well. On our team, we are doing right now two randomized control clinical trials, one looking at CBT for ARFID compared to a nutrition education protocol, and then the other is for folks who are getting treatment as usual with a GI condition, the outcomes that we’re finding so far are quite good. It you know, for younger people, our rates are around 60 to 70% of full recovery at the end of treatment, and then for adults, it’s above, it’s around 50% now, to me, these are good, and they also suggest that we could do better. So, we’re always in the process of trying to refine and adapt, and I think also trying to understand more about who does well, and maybe who might need a little bit more support. What we know so far is that the folks with the anxiety presentation tend to do really well, and then the folks with the lack of interest, which is the section that’s the trickiest. And then, you know, I think there are definitely some things that we’re learning as well about where adaptations to treatment can be helpful, particularly around folks with neuro divergent presentations, and then potentially also for folks with weight and shape concerns, where we might make some adaptations too.

Khadijah 39:21

Does ARFID look different in adults? I mean, we’ve been talking about kids and picky eaters and thinking about a younger population. What does it look like in adults?

Kamryn Eddy 39:31

So, it actually looks really similar, you know. And I think the thing, the thing to remember, is that it’s an illness that’s really long standing. So, a lot of times. You know, it’s hard to even pinpoint for folks of all ages, when did it start? Because they’ll often describe this is just the way I’ve been for as long as I can remember. I don’t know when it was different. And when you speak with parents, often, what you learn is that, you know, really early on, there were clear challenges to this kid’s eating, or even in utter. Row. You know, my eating as a parent may have been different, and so it really looks quite similar. I think one of the differences is that sometimes the motivation can be different. Sometimes adults are coming in again because they’re in relationships or want to have kids, or are really feeling the psychosocial consequences, which can be quite motivating. But then, you know, of course, by contrast, they may also feel quite tired because they’ve been kind of dealing with this forever, and it’s hard to imagine it being different. I would say that. You know, in adults, they have really also done quite well in treatment. So, you know, for about 50% to be fully recovered at the end of about 20 weeks of treatment is really powerful, and so you know, I would totally encourage adults to come in for treatment as well.

Khadijah 40:49

Well, this has been quite amazing and insightful to hear your thoughts about our fit and to help us think about it as caregivers and how we better support our kids. But before we wrap up, I’d like to ask either of you, do you have foods that you avoid? And if so, is there a reason why you avoid said foods? Maybe, maybe you could start Jane,

Gene 41:13

oh, man. Well, first of all, I do love to eat, but, and I’ll keep it really simple. I mean, I think there are, there are folks that like sweets, like ice cream and, you know, stuff like that. And then they’re people like me that love kind of salty fried food. So, if I were to have a great dessert, it would be potato chips, it would not be ice cream. So just given the fact that I’m very conscious of my cholesterol and what’s good for me and what’s not good for me, I try to avoid fried foods. I must say, I have a hard time avoiding potato chips for treats, but, but I avoid them because I know they’re not good for me, not because I I’m picky or I don’t like them. I actually, I actually do like them.

Khadijah 42:12

So, I never knew that about you, Jane, that you love salty, salty foods and, oh yeah, please interesting.

Kamryn Eddy 42:21

You and I totally have that in common. Potato chips. Anybody who knows me well will know that they’re, like, my absolute favorite food.

Gene 42:28

Me too. Yeah, me too.

Khadijah 42:31

You have a food that you avoid.

Kamryn Eddy 42:33

Yeah, it’s funny. So, I was thinking to myself, like, what do I avoid? I don’t need a lot of mayonnaise. I kind of grosses me out, but I do like tuna salad. So, there’s the thing that doesn’t make any sense, and then the other one would have been mango. So, I always thought I hated mango. Totally grossed me out. And I tried it this weekend, just randomly because it was in my fruit salad, and I totally liked it. So, I wonder if I just had always had bad mango. But the reason, I guess I say that one, is I also think food tastes kind of change over time. So, you know, it’s possible, too that there may have been things that people didn’t like as kids that you kind of grow into.

Khadijah 43:08

I had to pick a food that I avoid. I would say it would be okra. And I think it really is that consistency, that that mushy, slimy consistency. So, I also tend to avoid, like puddings and Jell-O. But I can’t eat what is it Creme Brulé, but, but I usually can just skim just a little bit of the top and have a little bit of the pudding. But anything that’s a pudding or Jell-o, or any slimy consistency, I just really, definitely cut off the list.

Kamryn Eddy 43:33

Creme Brulé is pretty special. I agree that one should just.

Gene 43:37

That is special, especially the crust on the top, okay?

Kamryn Eddy 43:43

Can I just make sure to mention as well, if I could, you know, for anyone who is interested in learning a little bit more, also, you know, I remember, I am a member of the Research Advisory Council for the National Eating Disorders Association. And I just wanted to also refer to folks to their website, which is the National Eating disorders.org where there’s a wealth of information provided about eating disorders, included ARFID,

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Gene 44:08

yeah, and for those of you at home, if you if you like what you’ve heard today, you know, consider leaving us a review. Thanks, Kamryn, for joining us today for this great discussion. But I also want to thank the National Eating Disorders Association for helping us set up this episode and providing a special screening tool for our audience to help them determine if they’re at risk of eating disorders. So go to their website. So as always, we hope that our conversation will help you have your voice. I’m Gene Beresin

Khadijah 44:40

And I’m Khadijah Booth Watkins. Until next time.

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Episode music by Gene Beresin

Episode produced and researched by Spenser Egnatz

A special thanks to NEDA for helping organize this podcast.