Making Sense of Selective Eating Ep 5
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[00:01:04] Madi Metcalf: Hello! Welcome to Making Sense of Selective Eating, Understanding the Psychosocial Domain, featuring Dr. William Sharp. My name is Madi Metcalf, and I'm a speech language pathologist with an interest and passion for pediatric feeding disorders. I'll be your host for this SpeechTherapyPD. com miniseries.
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[00:01:39] Now, without further delay, I would love to welcome Dr. William Sharp. William Sharp, PhD, is a clinical psychologist and professor in the Department of Pediatrics at Emory University School of Medicine. He is also Director of Children's Health Care of Atlanta's Multidisciplinary Feeding Program. In this role, Dr.
[00:01:56] Sharp leads a team of professionals that include psychologists, physicians, and nurses. Beach language pathologists and dietitians who evaluate and treat children with pediatric feeding disorder and avoidant restrictive food intake disorder, or ARFID. His research interests focus on identifying the cause, consequences, and treatment of chronic food refusal in pediatric populations.
[00:02:17] His most recent work involves developing and evaluating a training curriculum for therapists to deliver a manual based intervention for food selectivity or extremely narrow diet in children with ARFID. Hi Dr. Sharp, how are you doing tonight? 
[00:02:31] Dr. Sharp: Alright, how are you? 
[00:02:32] Madi Metcalf: I'm doing good. Thank you so much for coming on the podcast tonight.
[00:02:37] Dr. Sharp: Yeah, I appreciate you having me. 
[00:02:39] Madi Metcalf: Yeah. So, the last couple of weeks we've gotten to hear about just kind of an overview with Stephanie Cohen about what PFD is. We've talked with Lily Gullion. She's an occupational therapist and she told us about the how we can work with PFDs in the schools.
[00:02:52] We talked with Raquel Durban about the nutritional domain. And last week we had Dr. Praveen Goday talking about that medical domain and GI. So this week we are so eager to dive into that psychosocial domain and learn more about that. 
[00:03:04] Dr. Sharp: Great. Yeah. Let's get into it. 
[00:03:06] Madi Metcalf: All right. So can you provide an overview of the psychosocial domain of PFD and what all in it entails?
[00:03:13] Dr. Sharp: Yeah, so when they developed the psychosocial domain for PFD, they they were using the World Health Organization. I believe Praveen probably spoke about the framework they use. and that looks beyond just avoiding and restricting food intake. It looks at the impact that it has on the family. It impact, it looks at the impact that that has on the parent child relationship.
[00:03:34] So not only are we looking at the, the child's food restriction and avoidance, we're looking at the broader impact on the family in, in the, in the family unit. And I believe there's one more. I'm forgetting it. But I'll, if it comes back to me, I'll, I'll, I'll remember what the fourth one is. 
[00:03:50] Madi Metcalf: Can you dive into a little bit more about how that feeding relation or a child's feeding difficulties can impact that relationship with like their parents or their families?
[00:03:58] Dr. Sharp: Yeah. Yeah. Yeah. So, a one of the, one of the things that a major job of a parent when you have a young children, especially is to make sure your child's growing and thriving. So, you know, when you go to the pediatrician When you have very young children, one of the main things you do with a pediatrician visit is you get a weight weight check.
[00:04:16] They tell you where you're plotting your child. They tell you how well your child's growing. And if your child's not thriving and falling off the growth chart, that can really impact the parent, cause a lot of stress, cause a lot of angst related to and concern about their child's growth. There's also the case where if your child's really narrow with what they're eating, but they're growing fine, and you're, you're saying I have concerns about my child's diet, the pediatrician might be blowing you off or basically not seeing the level of concern that the parent has because.
[00:04:45] There's a mismatch between the data point they're looking at in terms of the growth chart and what the parents reported either way when a child is rejecting food and having a lot of problems during meals, it can be very stressful for the parent because they're wanting their child to do well and to be successful during meals.
[00:05:03] And it makes them feel like they're not successful because of the rejection and the lack of success with feeding their child. 
[00:05:09] Madi Metcalf: Yeah, I. I didn't realize how touchy of a subject that would be, working with feeding disorders, until I kind of got in it, and it's always such a, I don't know, it's Even though I'm a speech pathologist, and I am not a psychologist or a counselor or anywhere in that, you know, domain.
[00:05:28] There's, you have to take, like, look at them as a person and really take that into consideration. And one thing that I tell my students whenever they're with me, I'm like, we have to be so mindful of where that parent is coming from. Because right now, they have their child, and as a parent, your number one job is to nourish your child and keep them alive.
[00:05:44] Dr. Sharp: Yep. 
[00:05:44] Madi Metcalf: And they're having a hard time with that right now. 
[00:05:47] Dr. Sharp: There's also a history of blaming parents when things aren't going well with their kids, you know, dating all the way back to when, when autism was blamed on refrigerator mothers you know, I think the parents take a lot of the brunt when it, when things are not going well, when it's actually, you know, PFD is a, is a diagnosis that now exists in the ICD 10 here in the United States.
[00:06:06] And then our fit is a psychiatric diagnosis that that is that is in the 5. and so these are actually disorders that that is not the fault of the parent. Now, parents can can inadvertently. Shape some of the problem behaviors they're seeing, because. Rightly so, it can be confusing when your child's not eating, and you might try a lot of different things and do some things that actually make it worse, but you're not, that's not intentional.
[00:06:28] Madi Metcalf: Do you ever feel like a parent's own relationship with food or diet culture can impact their relation, like, can that also impact the feeding relationship? 
[00:06:37] Dr. Sharp: We think that our avoidance of food intake disorder, we think it might have a genetic tie. We think, you know, is a little different because is a broader term that encompasses those 4 domains.
[00:06:51] So, you know, with the medical and the nutrition and the skill base. A lot of those conditions also have underlying medical organic issues that go along with it. Right. So you wouldn't really see prematurity necessarily being passed down from, from from generation to generation necessarily, but you could see heightened sensory sensitivity passed down.
[00:07:13] You could see G. I. Issues passed down. I've had parents, I literally had a dad in my clinic who's who had his feeding tube removed. About a year before his child started treatment in our program and he said, I never liked food. Never a big thing. I just, I used my tube and he ended up getting married and his wife said, I'd like you to start eating with us.
[00:07:35] Like, and I'd like you to eat at our wedding night. So he was an adult to get off his feeding tube and he had a child with a feeding disorder as well. 
[00:07:43] Madi Metcalf: Wow. That is so interesting. I didn't realize that that psychosocial piece could also be genetic and passed down. So that is, So interesting to know.
[00:07:53] Dr. Sharp: One of the things we do in our clinic is we actually ask during the evaluation. What was mom's relationship with food? Like, and what is dad's relationship with food? Like, and we get a lot of positive hits on. I was always a picky eater. I never really you know, food was never really my jam. I didn't really necessarily enjoy eating.
[00:08:11] So we do see, and it's not every case, but, you know, for, for a lot of a lot of things we are seeing. That and then you mentioned cultural you throw on the fact that a lot of times. You might have dietary restrictions as part of the family diet that can exacerbate a pre like if you're if you're selected, if you're selected to begin with, and then you're putting cultural parameters on an already narrow diet, it can make it can make things inadvertently worse.
[00:08:37] So, yeah, there's layers to that family dynamic in the, in the diet. 
[00:08:42] Madi Metcalf: So, can you dive into a little bit about what, well first off, so at, is it at Children's Hospital in Atlanta that you lead the feeding team? 
[00:08:52] Dr. Sharp: So, it's Children's Healthcare of Atlanta and we have three locations. We, we have at Autism, we have a clinic in the Autism Center because we do know that Autism individuals with Autism have a high rate.
[00:09:04] Food selectivity, particularly like eating a narrow diet. And then we have a clinic in the center for advanced pediatrics at the main campus. It's about to be the main campus. And that program is really built for medically complex kids. We know that, you know, medical complexities can really drive.
[00:09:20] Feeding problems, and then we do have a 3rd location. That's in 1 of our suburban areas to try to serve. Metro is really big. So we try to spread out a little bit. And we have about 144 team members that we have in our clinic. That are geared toward helping families and children with pediatric feeding disorder and orphan.
[00:09:40] Madi Metcalf: Oh, wow. That is so awesome, especially because you guys are kind of so spread out and interdisciplinary and are able to just help such a large area of kiddos. That's awesome. So what is your role as a psychologist on those feeding teams? 
[00:09:54] Dr. Sharp: Yeah, so in our program and it varies, you know, what psychologists do on teams, but in our program, the psychologist is responsible for figuring out how to help the child reestablish a positive relation with food.
[00:10:07] So. You know, we view a lot of these children who are not eating once they're medically cleared. And we figured out they're not they're not in pain or discomfort. Our view is that food avoidance that's chronic is, is a conditioned or a learning process. So what the child learns. Is that, you know, this previously painful or uncomfortable eating situation, the way to avoid it is to, if I can't communicate, I don't want to do it.
[00:10:32] I'll cry. I'll push away the food. I might even get out, leave the table if I, if I can. But basically I'll do anything to avoid pain or discomfort along the GI tract. And that food refusal eventually teaches the learning process comes about 'cause the food eventually gets removed and the parent ends the meal.
[00:10:48] Because the parents are also learning on their end that the way to get their child to stop having problem behaviors or crying or screaming, is to remove the food and in the meal. So parents learn the way to get crying to go away is to remove the food. Child, children, children. The way to get the way to get the food to go away is to get really upset.
[00:11:05] And so by the time they get to us there's really this maladaptive relationship children, when they get, when they, when they're put into a mealtime situation, they, they immediately get really distressed and parents are trying to cycling through a bunch of different things to try to coax and prompt their child to eat.
[00:11:22] Neither of these things are very functional in terms of helping establish a developmentally and positive relationship with food. So the psychologist's job is to use behavioral intervention. Kind of behavioral. If you're older as a way to teach the child, one food doesn't hurt you and it can be something enjoyable.
[00:11:39] And then after that, we, we've really taught the child food won't hurt you. Our job is to empower the parents to be able to take this treatment approach and adopt it into the home setting. 
[00:11:51] Madi Metcalf: One thing that's just come up in every single episode is. That while, yes, we're working with the Children, a crucial piece of feeding therapy is also coaching and empowering the parents.
[00:12:02] And so I just love kind of hearing you hit on that again this week because. It's just been a very common theme and it's one that I found to be so important in my practice because if I can feed your kid, that's great. But what really matters is that you can go home and you can feed your kid, 
[00:12:15] Dr. Sharp: Right?
[00:12:15] I mean, the goal of parent training is really paramount to, to our process. You know, we, we are not a drop off program. So we, I didn't describe our levels of care, but at the core of our program is a Monday through Friday. So Monday through Friday, right? Four meals a day. So you come in, you start at nine, you have a nine o'clock, a 10 30, you know, a noon and then an afternoon meal and you're there the whole day for up to 10 to 12 weeks.
[00:12:41] And that program is really designed for the most severe kids, the kids who are on G tubes who don't eat by mouth, the kids who might only have 2 to 3 foods in their diet. The really intense kids and the goal of that intervention is to give us enough therapeutic time to help the child get from, you know, zero oral intake to hopefully partial to full weaned from their feeding tube, or, you know, really narrow diet.
[00:13:04] But the parents are, they're required to be there the whole time, which is a huge sacrifice, but they watch every session. We have observation windows where they'll watch the treatment and then they'll then they'll participate as soon as we know, it's going to work. 
[00:13:18] Madi Metcalf: Okay, that is would be really neat to partake in, but also seems like a really intense process for the child and the family and quite a big commitment.
[00:13:30] That's, you know, if they're having to take off work and and that sort of thing. Although I do have 1 patient right now where they're feeding is. They're they're so worried about their little ones feeding that mom has to stay home because they're like, I don't think I could send him to daycare. So they would have that.
[00:13:44] Dr. Sharp: Yeah, the way we, the way we sell it is if we can transform your child's relationship with food in 2. 5 months, then I mean, it's not like you're not going to have to worry about it again, but you're going to get over a major barrier. 
[00:13:55] And what's really cool about our, the intensive program, it. Is we have a few studies that have come out where we've said what happens at the end of treatment.
[00:14:03] So our goal, let's just take kids on feeding tubes. For instance, our goal is not to push volume once again. We're really about that positive relationship with food. Our goal is to teach the child that food is something that can be enjoyed. So, when we looked at our outcomes for 81 kids on feeding tubes that saw us in a period of time.
[00:14:21] We found that only 32 percent of them weaned fully from their tube after eight weeks of treatment. So about 32, but we looked a year later and we said, what happened to these kids a year later? And that 32 jumps to 71. So we have a more than doubling. And what's happening is the parents are doing it themselves.
[00:14:39] And what's really cool. We partner with feeding matters you know, the national parent organization or the advocacy organization. We partnered with feeding matters and we're doing a five to 10 year outcome study where we're going to these 81 families saying what happened to you as you grew up. And so we're looking at kids that are 5 to 10 years out from treatment and we're, we're about to tell a story about what, what was the journey after they left us a year after a year.
[00:15:02] Madi Metcalf: Oh my gosh, that is going to be such a cool article. I can't wait to read that. That'll be so interesting to see like where those. Families ended up following treatment. 
[00:15:13] Dr. Sharp: Yeah, so we're excited about that. 
[00:15:15] Madi Metcalf: That's going to be awesome. And then it'll also be really cool just to kind of see, like, from a treatment perspective, like, what is going to be effective in these families.
[00:15:27] And so, I mean, that's like a very specific, intensive approach, but, you know, laying the groundwork. For what might be a good treatment approach. 
[00:15:37] Dr. Sharp: Yeah, we're asking questions and I was looking at the survey this morning and parents help develop this this line of research. So it was the parents coming to feeding matter saying we need to know what works and what happens to individuals who go through treatment in the long run.
[00:15:51] And 1 of the questions we ask is, how is your child's relationship with food now? Is it good? Is it neutral? Is it bad? And I remember looking at data this morning, and the majority of parents report their relationship is a very positive relationship at 5 to 10 years out. So that that's neat to know. 
[00:16:06] Madi Metcalf: Oh, my gosh.
[00:16:07] That kind of gave me chills. That is so awesome. I also think it's really cool that whenever they origin or at that 8 week point, only 31 or 32 percent were weaned. But then 71%. After that full year and so it really just goes to show like the power of one laying the front frameworks and the foundation for a positive relationship with feeding, but also that parent coaching, because that's like a huge jump following is that's over half that or it doubled after they like, yeah, 
[00:16:36] Dr. Sharp: the articles really need if folks are interested in looking at it, we actually have this table that we showed.
[00:16:42] How many kids gained and then how many kids lost? And so we had two, two individuals go from full weaned back to their feeding tube. But then we had like a huge swath move from partial weaned to full weaned. So it was a really neat kind of change to see happen. 
[00:16:57] Madi Metcalf: Do you, we are research lovers here at Speech Therapy PD.
[00:17:00] Do you know the title of your article? 
[00:17:02] Dr. Sharp: I can, I will, I will give it to you to give in the cliff notes. I don't have a 
[00:17:07] Madi Metcalf: Okay, cool.. 
[00:17:08] Dr. Sharp: I don't have this 1 was like successful evaluation of factors related to weaning or something like that. But, you know, we can put in the show notes afterwards. I can give you the bibliography.
[00:17:19] Madi Metcalf: Perfect. Would love that. Okay. So, can you talk a little bit, so I know that for a treatment approach is going to be different for every single kiddo, but can you talk a little bit or would you feel comfortable sharing a little bit about what that treatment approach looks like from like that psychologist perspective?
[00:17:33] Dr. Sharp: Sure. We, we always start with a home baseline. So we ask the parents show us what it's like to try to feed your child. That's fairly standard in our, in our clinic. And the goal of that is to really figure out. Is the kid eating anything? Like, what is the child's current relationship with food? And then we want to know what the parents are trying and may or may not be successful with.
[00:17:55] And so after that home baseline, for some parents, we start working with them immediately. And we say, here are some skills that we really think you should work on with if the child eats anything. Here are some things that you should work on with preferred foods, foods the child likes. If the child is a complete food refusal kid and they're not eating anything, then we're going to start from ground zero.
[00:18:15] And we're really going to start with just systematic exposure. Where we're gradually introducing food in a very very slow and gradual manner so that the child Gains confidence, gains gains experience in, in really, we try to disarm the child. They're, they're so used to in a lot of our home baselines.
[00:18:35] When you look at what we say, show us what you're trying to do. The most common thing that a parent will do is they'll, they'll, they'll pull out a bowl of, let's just say yogurt. They'll pull out a boat, boat, boat, bowl of yogurt. They'll take a giant spoon, fill up the spoon, and try to present it to their child as if their child eats.
[00:18:51] Like, as if they're like a great eater. And so the first thing we do is we say, we understand you don't like food and you're not an eater, so we recognize that the child doesn't like food. And we then take the perspective of, and therefore we have to go really slow, go very small, and build on success.
[00:19:08] Madi Metcalf: Gotcha. Whenever you're presenting those foods, are you using kind of like, Sitting at a table, here's a bowl, I'm gonna eat this yogurt, or do you do it in more of like a play based kind of context? 
[00:19:19] Dr. Sharp: So, it depends. We're not a kiss, lick, touch, food type of approach, unless you won't kiss, lick, and touch it.
[00:19:27] Like, so, what I mean by that is if, and we're not a We meet the child where they are. So I'll give you an example. I have a a three year old with us now, and he, he, he doesn't separate from his mom. If you try to get him to go for mom, and this is before he came to feeding therapy. He just, he's not going to, he's not going to preschool.
[00:19:46] He's not going to relatives house. He's not having any separation. We spent the first 2 weeks. of intervention, getting him comfortable to go to a room with therapists and play with them in the room. And then we, we transitioned him into a chair and got him comfortable with the chair. And then we, and so I looked at mom and I said, this is in week four and they're staying a little bit longer because he's got a very interesting profile.
[00:20:10] But I said to mom, we we've only been doing this for two weeks. And she said, but we've been here for four weeks. I said, yes, but we only started feeding two weeks ago because we spent the first two weeks just getting him comfortable with being alone with this in the room. And for him we're, we're focused on transitioning from from a certain type of dependence on, on formula to, to actually consuming food by mouth.
[00:20:30] And so that's kind of our goal for him. And we're at a different spot where we're, we've got him in the chair. And we involve toys if we need to. We involve toys either to make it fun or to motivate. And so by make it fun, it means enriching it. Motivate means if you do this, you'll get that. 
[00:20:46] Madi Metcalf: Gotcha.
[00:20:47] So how can the psychosocial domain impact our eating choices? 
[00:20:55] Dr. Sharp: Well, I mean, they can, you could have 0 intake if you're a complete, you know, if you have, let me go, let me go back and give it the buckets. So I look at the buckets of kids. And our fit has different buckets that they put them in. You know, it's got the 4 manifestations, which is you're underweight, so you don't need enough food.
[00:21:13] It's got your nutritional deficiency, so you, you don't need enough variety, but you might need a volume. And then ARFID, the third part of ARFID, is really the dependence on enteral feeding or oral formula supplementation. And then the fourth part of ARFID is severe psychosocial dysfunction. So the first three make sense.
[00:21:31] I'm not eating enough volume. I don't eat enough variety. I don't eat at all, right? The fourth, I think to your question, is really that psychosocial domain. That is, that is an ARFID. And I used to not be a big fan of the psychosocial domain. And that seems weird coming from a psychologist. But what I meant by that, Is this kind of ambiguous?
[00:21:48] It's not something you can measure until I started seeing more kids. Like, that with I'll use food allergy and example, we started seeing kids with food allergy and we partnered here in Atlanta with the food allergy center. My friend, Brian Vickery runs that that center. He's a great doctor that studies peanut allergy and other immunology, immunology, anyway, you get the idea, immune, immune system based eating/feeding problems. And what we were learning was we were seeing kids who their weight was fine. They in a variety, they weren't on a feeding tube, but they would not eat at school. They wouldn't leave the house and eat. They couldn't go to restaurants because they were petrified of having an anaphylactic experience because they had one traumatic experience with food allergy.
[00:22:29] And so they go to school all day, they come home and they're there. They start eating at three, they eat, you know, their meals at home. It had to be prepared in a certain way. And they had like safety concerns. And what we started learning is what this can be a huge issue that started as a medical issue, but it's no longer just food allergy.
[00:22:46] It's something beyond that. And the families really adapted their life to this child who basically goes hungry at school for 8, you know, 7, 8 hours a day. So that's just one example of kind of how this can work. Can be a broader impact that you wouldn't think about if you didn't see enough of these cases,
[00:23:05] Madi Metcalf: or do you think it's very common that our fit develops out of an underlying medical or feeding skill deficit?
[00:23:13] Dr. Sharp: Yeah, so we're a little club, we're going to have a summit later on this month through feeding matters to look at have this conversation because I really think there's subtypes of our fit. And in this, in what we learned, so when ARFID came out as a diagnosis, it used to be feeding disorder of infancy and early childhood, you couldn't be diagnosed with ARFID, with that feeding disorder in life, if you were six years or younger, you had to have it occur before then.
[00:23:36] But with ARFID, it opened it up to be a lifespan condition. So you can be diagnosed with ARFID in adolescence as an adult. So I really think what we have is subsets of ARFID. I think some kids adolescents, older kids who develop ARFID later on, had, had shown risk factors when they were younger. They might have been very narrow with their diet, been very picky, and therefore they, and then they have some type of psychiatric, usually it's anxiety type of issue around adolescence, you know, or late childhood.
[00:24:02] where they really go down a rabbit hole and restrict their diet. But then other kids with ARFID are the kids that I'm used to seeing throughout my early career, which were the two, three, four year olds who are medically complex, who have never had a positive relationship with food. So I think There's, to answer your question, I think some individuals with ARFID are PFD kids that grew up and never really and the medical got solved for, the nutrition might have gotten patched up, the skill developed, but they still actively avoided food.
[00:24:35] And then I think there's some individuals with ARFID that were normal eaters. By normal, I'm saying they learned how to chew, they never had a feeding tube, they never had. You know, significant restriction, although they might have not had the most positive relationship with food, but then they might have had some event and they usually have a triggering event.
[00:24:50] They'll say that choking episode, but usually if you really get down to it, the child's very anxious or very perfectionistic And that something occurs that makes them really stop eating for whatever reason 
[00:25:02] Madi Metcalf: What do you think about? Like a 2 year old getting diagnosed with our fed. 
[00:25:10] Dr. Sharp: So if you, so I, I, my my colleagues and I don't necessarily agree about this.
[00:25:17] Okay. When I tell them to do is go read the diagnosis of the DSM. So the DSM is actually where the diagnosis lives. And it actually says verbatim in the DSM. Arvid typically first arises during infancy. It uses the word infancy repeatedly. So to your point, to your question, infancy is two or younger.
[00:25:37] So I say ARFID can occur at two or younger and I treat kids two or younger. Now, my eating disorder colleagues would say that ARFID needs to be a cognitive component that kids need to be. It's, it's, it's a psychiatric condition. But there's tons of things in DSM that are young developmental conditions that occur during early childhood.
[00:25:57] Disruptive behavior disorder is another one. Kids develop sleep problems early on. Toileting. So I view feeding or ARFID in the same bucket as those conditions. 
[00:26:06] Madi Metcalf: Okay. Makes sense. You just have my wheels turning, Dr. Sharp. 
[00:26:11] Dr. Sharp: Well, I think it's just a different lens to look through it. I mean, I spent more time because I wasn't at.
[00:26:16] I liked ARFID when it came out for a few reasons. One, the previous diagnosis of infancy and early childhood that was in DSM IV, you had to be underweight. So I could get kids on a feeding tube coming to me for treatment and they wouldn't meet diagnostic criteria for that disorder. Because their weight was fine.
[00:26:35] So I'd be like, okay, you don't eat, but you're using the tube correctly and I can't, I can't work with you. Or you could be, oh, that's frustrating you. You could be a selective eater and you could be obese, but you only eat three foods and you've got rickets or scurvy. And I couldn't build for that because like that wasn't so I think our if it's beautiful in that sense but what I learned about our fit as I got deeper into it and I started talking to more people across the aisle of the eating disorder in the feeding store world because I was a bit confused why they did pfd until now I'm a I understand pfd too.
[00:27:06] But I felt like they took our diagnosis and they kidnapped it and they made it something else. And so when you go read about ARFID in the eating disorders literature, they'll say it's new. We don't know anything about it. It's these older kids. They're there. Are they, do they have anorexia? How are they similar to anorexia?
[00:27:21] I was like, wait a minute. It used to be called feeding disorder of infancy and early childhood. Why are you studying it in an eating disorders population? So I think it's because. We do know that kids with ARFID were showing up at the eating disorder clinics and they were confused by them and they wanted a diagnostic home for them.
[00:27:37] So that's how ARFID really got championed by the eating disorders community. 
[00:27:42] Madi Metcalf: When did the ARFID diagnosis come out? 
[00:27:44] Dr. Sharp: 2013. 
[00:27:45] Madi Metcalf: Okay. All of this is just so new because we got the PFD code in 2019? 2019. 
[00:27:51] Dr. Sharp: So, the reason I said I wasn't a fan of the PFD diagnosis at first, Was I was like, why do you need that? We got our fit now.
[00:27:58] Our fit is perfect. It was perfect for me, right? Cause I see all the kids that I needed to with underweight. But what I think PFD does so beautifully. Is it highlights the need to medically screen kids that aren't eating it highlights the need to look at psychosocial. I mean, feeding skill. And make sure you're checking off the box and swallow safety underlying skill deficits.
[00:28:20] And then there's significant overlap between our fit between the psychosocial domain and the nutrition domain. They're basically verbatim, except that that does include the holistic approach to looking at the family dynamic and looking at the broader. Impact on the family and the family unit. 
[00:28:36] Madi Metcalf: It sounds like you are already doing that a little bit, though, with your ARFID diagnosis as well, though.
[00:28:40] Dr. Sharp: Right, but the manual is so specific, it didn't broaden it that way. You know, it would say, like, how does it impact the family? But it didn't, you know, with PFD, it explicitly says this is diagnostic. 
[00:28:52] Madi Metcalf: What does your working relationship look like with SLPs usually? 
[00:28:55] Dr. Sharp: So we've got a group of SLPs in the program that, so there's really, I'd say three relationships we have.
[00:29:01] One is we, we employ them and in our program, they are, they're not necessarily consultative in nature, but their job is to make sure the child is safe to eat. If they're safe to eat, that either means they can begin the treatment because they're, they're not aspirating and they're not like, they're not concurrently having any type of safety issues.
[00:29:22] Or if we're trying to advance texture, they might be telling us like, Hey, I wouldn't jump to this texture right now 'cause that would be a choking hazard. That be some safety concerns there. They're also if we sometimes we be prepping a child for a swallow study. So if a child's never been able to participate in a swallow study, we'll bring them in.
[00:29:39] We'll establish some level of intake and then our SLP team will coordinate with our internal swallows the, the, the swallow team that do the, the, the swallow studies. So that's the second relationship is we have a relationship with the hospital based SLPs who do SWALA studies and evaluate SWALA safety.
[00:29:54] And we send a lot of kids, they either send them to us to get prepped, or we send them to them once we prep them to see if they're safe to SWALA. And then the 3rd relationship we have is where we have a good relationship with our, I think we have a good, I'd like to say we have a good, with our community based providers who are, you know, we know that PFD is such an unmet need in the community.
[00:30:14] We know the majority of people. Who are providing care in the community or speech language pathologist and occupational therapist and we we take referrals from those providers when they need more intensive treatment and then we send them back to those providers once we've got it to a good point and they continue working with the parent on whatever remaining things that need to be worked on.
[00:30:34] Madi Metcalf: Do you ever collaborate with the. Outpatient SLPs or OTs to kind of let them know what you did and you're like, okay. 
[00:30:43] Dr. Sharp: Yeah, we send them. Sometimes we tell them, please come to our clinic and watch. We sometimes tell them, this is what we want you to work on. This is what we're because we continue. We sit, we still follow our kids when they leave us, like, we see him easy, like, every other week with a psychologist, just to make sure the parents are well supported.
[00:31:01] They know what they're doing. And the kids are continuing to make progress. But at the same time, I'd rather not work on texture advancement. I'd rather somebody on the skill domain work on that. I'd rather not work on some of the other skill based components, because that doesn't fall under the, the, the, the psychosocial pillar.
[00:31:17] Madi Metcalf: What are some red flags that should alert an SLP that they should probably refer their kiddo to a psychologist? 
[00:31:24] Dr. Sharp: They're not making progress and I think it depends on what, you know, 1 of the things we wrestle with, and when we talk, so we have an internal work group where we talk amongst all the SLPs in our system.
[00:31:33] And they're like, what do you mean by progress? And I, like, we need to find that. So, I think progress to me means. Are you making, within three months, I think some insurance programs say two months, but are you making meaningful changes in the child's diet within a reasonable time frame and taking one bite of a new food you know, a session is not meaningful to me.
[00:31:54] It might be a good starting place if you were, you know, session 1, but if you're 2 months into treatment and you've got, like, 1 food on board, or are you still working on a few foods and, and, or you're not weaning by that point. I think you would want a more intense approach. And let me, let me let me give a little bit of a, of a background because I know some intensive programs have bad reputations.
[00:32:16] And rightly so. I think some of the techniques that have been used at some of these programs. historically have not been very well thought of. It's not child centered. It's not responsive to the child. And I think that's where we came from. Me as a champion for intensive intervention, I'm more of a champion about the environment itself versus what actually had occurred during treatment.
[00:32:37] And I think that's where we So let me sell, let me sell you on, you can, you can, you can debate me on this, but lemme tell you what I think the environment does. I like the environment 'cause it has a multidisciplinary team. It's got gi, it's got nutrition, it's got SLP, it's got psych all under the same roof, right?
[00:32:50] Mm-Hmm. . It's, it's giving you a dose of treatment that you can't get. So when you do weekly therapy, you come one time a week for, let's say an hour. I'm doing an entire month of treatment in one day. I know it doesn't really equate to that, but you're getting four sessions a day where it would take you a month to get those four sessions.
[00:33:07] And within one week, you've done five months of treatment. I'm, I'm, I'm being a little facetious, but you get the idea of that dose. Right? And then you're involving the parent with every step of the way, and you're showing them how to do it. In a way you can't do in that outpatient setting. So that's my really my selling my plug for the intensive model.
[00:33:23] But I know there's not enough capacity to meet the unmet need in the community. And my intensive program is the largest in the country. I know that because we did a study recently. We have 32 slots at a time, or 32 kids are enrolled in the program at the 3 locations. That that is 3 times, or at least almost 3 times the size of any other program in the United States.
[00:33:40] So we don't have enough capacity. So let's. I'll be clear on that. But I do think, although there were some things that happened in these intensive program in the past, I do think the things I just mentioned hold benefit for many families. 
[00:33:51] Madi Metcalf: How does responsive feeding, like a responsive feeding framework fit into the intensive like paradigm?
[00:33:57] Dr. Sharp: Yeah, so, you know, it's interesting you say that. I, I, my, my colleague, Colleen Lukens, I'll plug her a little bit at CHOP, she always says, Will, stop saying that because it's not true. But, it is true for the most part. In our program, at Children's, and I think this is true for many other programs, We don't want kids to be upset, right?
[00:34:18] Crying and screaming when food is presented is not what anybody wants. Like that is not what I want. That's not what you would want as a therapist. That's not what parents want. And so our job is to somehow get the child to make contact with food so that they are not screaming and crying. So I, what I, what Colleen gets mad at me for saying is I usually say, and so when a child, we don't want to get, we don't want children crying.
[00:34:39] We stop when children are crying. She's like, do you really? And I'm like, yes, we, but that doesn't mean we stop intervention. We pause what we're doing when a child's getting distressed. And we look at the child and say, is there another avenue we can go about trying to help you develop a more positive relationship with food?
[00:34:54] And then we, we go down that Avenue. So treatment doesn't stop, but we do pause intervention. When a child is not responding in a positive manner to what we're trying to accomplish. I think in the past, or maybe even currently in some programs, they would view it as an extinction burst. You've got to work through the extinction burst because you've got to get through the problem behavior.
[00:35:15] No, you don't you know, extinction burst may be necessary in very rare cases where children are so resistant to making contact with food that you have to have a little bit of, I mean, there's going to be cases where children are going to be like, uncomfortable with what you're asking to do. Because. It is a challenging thing for the child to go through, but it doesn't mean you, it should be a torture chamber.
[00:35:37] And I think those are distinctions. So, but I do think they're pendulums. We at Feeding Matters, cause I'm on the research task force at Feeding Matters, we talk a lot about camps. And I think there's a camp now that says, We're the responsive feeding people, and we have a white paper, and we shouldn't do X, Y, and Z, you shouldn't have, and I actually read their white paper, I like it a lot, but you also shouldn't reject 40 years of research that suggests that behavioral intervention and cognitive behavioral intervention is a very successful way for structuring meals if you do it in a responsive, thoughtful way.
[00:36:09] Madi Metcalf: I definitely feel that so I graduated in 2020 and have just dove straight into the feeding world. And that's definitely something that I'm, one of the reasons that I decided to do this podcast is because there's such a broad spectrum of ways to approach feeding therapy. And, you know, I resonate with us so much of what the responsive feeding camp says, but then sometimes never, I'm like really leaning into the responsive feeding camp.
[00:36:35] It's like, okay, but I feel like there needs to be a little bit more. you know, push with some of these kids sometimes. And so because, you know, learning new skills is hard and we have to challenge ourselves sometimes. And so, yeah, 
[00:36:50] Dr. Sharp: keep on going. This is good. I've got a comment after this, but go ahead.
[00:36:52] Madi Metcalf: Yeah. So just kind of finding. Where I fit in with that kind of on that spectrum and what's going to be the most beneficial for my kids. And it's been really enlightening talking to you tonight and kind of hearing more about that cognitive behavioral background and where that, I don't know, just kind of that pushing through sometimes can be beneficial because it was shown to be beneficial in your tube feeding study that you did.
[00:37:16] Dr. Sharp: And one of the things my, my colleagues, I've got three kind of caveats to what you just said, because I think they're all good points. One is feeding somebody by feeding tube is not necessarily any better that that that's not voluntary eating either. Like, like, it is an artificial way to get your needs.
[00:37:34] Right? 
[00:37:35] Madi Metcalf: Yeah. 
[00:37:36] Dr. Sharp: I have a little guy right now that we're seeing 3 years old depended on, on, on a certain type of milk that that's not going to be available for very much longer. So he's actually gonna lose a source of, of, of, of intake and, and he can drink. We know he can. But he's the kid I was describing earlier that has trouble separating.
[00:37:55] So what, the way we did this is we, we present him with very reasonable, it's a new milk. He's never made contact with it. We present very small amounts of it. Ask him to take a drink and then after that, you can go back and see mom. And once he learns that I get to see mom after taking my drink. And so then we were going to gradually fade up the volume of that until he weaned him from his milk.
[00:38:15] Now, if we would have said, Hey man, it's okay. If you don't want to drink this. He was, he's gonna end up in the hospital, either in the hospital for malnutrition or in the hospital to get a feeding tube. So, the second story I'll tell, there was this great story at at this feeding panel I was at, and the speaker was from the Florida, the program in Florida, and she likened it to her son getting stitches.
[00:38:37] So, this kid, in this case, needs treatment. He needs to get stitches, and that's the analogy here for the kid that needs to transition to a new formula. So, She, she talked about two different experiences that her son had getting stitches. Apparently he, he needs stitches a lot. I don't know exactly what's going on with him, but she described one time you went to the hospital to get stitches and they asked him, Hey, do you like stickers?
[00:38:58] Do you like toys? Like, do, would you like to have other things involved while you, while we wait to figure out stitches, what color stitches do you want? How many stitches do you think you you need? We could give, we give you eight. We give you 10. He was heavily involved when he could be he was participatory because he could be and he didn't get upset as you know, as upset as you get when you're getting stitches, but it was a, it was a, he didn't have to be held down.
[00:39:20] He wasn't like, you know, it wasn't this forced thing. She described in a 2nd situation where he went to the hospital, get stitches. They didn't involve him at all. They brought him in, barely talk to him, gave him the stitches. He flips out, has to be held down and everybody was traumatized by the situation, right?
[00:39:38] So I liken the first approach is how feeding should be done, involve, adapt, enrich as much as you can, and the latter example is what feeding should ever be. 
[00:39:48] Madi Metcalf: I like how in that first example of what we want feeding to be, it kind of even fell on those like responsive feeding tenets of, you know, he was, had some autonomy and getting to choose what options he wanted, like, you know, how many stitches do you want?
[00:40:02] I, eight's going to be fine, but 10 will be fine too. Which would you prefer? You know, he got to have like a little bit of like relationship with the providers that were there. Then competency, he had to do it. But it kind, 
[00:40:13] Dr. Sharp: you gotta do it. So it's interesting 'cause my team's gotten so pon, like, almost like the kid with the, the cup I was talking about earlier.
[00:40:20] They were letting him do all types of wacky stuff. I mean, not wacky, but they were trying to shape it up. Okay, just touch it to your lips. And he was like pouring this, the, he wasn't making any progress. So when I went back down, I said, guys. We know he can drink. We know he's capable of drinking from a cup.
[00:40:36] We just, we just need to tell him, you do this and this happens, right? And so he's got to get his stitches. We'd enriched it enough, and by the end, his mom was in tears because, you know, within this short period of time, he'd gone from, I won't do this at all, to I'm now taking my drink, swallowing it, and I'm leaving to see my mom.
[00:40:51] So it is this imbalance between being too, too, too slow, or too So I think if the field could take the approach of, it's treatment. That's it. Treating means you're doing something and it sometimes it's something the child's not going to want to do and we shouldn't overwhelm the child or the family but you got to have something that's and something to me means you're eating like it's going down your throat.
[00:41:14] There's some progress toward swallowing new foods and increasing the volume. 
[00:41:20] Madi Metcalf: Right. 
[00:41:20] I like that you shared a little bit more about that, kind of like, he gets a drink, he goes see this mom. It wasn't like first day of therapy, we separated from mom, we put him in a chair, we said, you have to drink this five milliliters of milk, and then you can go see mom.
[00:41:36] There had been like, you know, you'd already worked on establishing that rapport with the therapist to leave mom, you already, you were doing like positive things. He'd been around the milk, had some positive experiences with the new cup and the new milk and all the things, and then you're like, okay. Now it's time to up the ante a little bit.
[00:41:53] We really need him to drink the milk so we can start building on that skill. 
[00:41:56] Dr. Sharp: He, he drank water. So not only did we not bring in milk first, we established that he drank water with a therapist in our chair, out of the room, and then he got the, if then, if I do this, then I go to see mom. And then we went to formula.
[00:42:11] Madi Metcalf: So there was even like another little step that just was like, okay, We can do this. It felt like we are at a point where we could maybe challenge him a little bit more and work towards that feeding goal. 
[00:42:21] Dr. Sharp: And he wasn't, he wasn't happy necessarily. Like, oh, you're really going to make me do this, but he did it.
[00:42:25] And then he learned it didn't hurt me. He actually liked the taste and he, he pretty much, so it's about helping the children make contact with food. So they learn that it's actually, cause like in this country, Most kids are obese because they're eating too much food because food is a primary reinforcer.
[00:42:41] So our goal as a treatment team is to teach kids and we don't want them to become obese. But we do want them to realize that food is something to be enjoyed. 
[00:42:49] Madi Metcalf: So we had a question. How would you recommend handling cases for school age children that are refusing to eat during the school day despite eating food at home?
[00:42:57] And this kiddo is in regular education and not on an IEP. 
[00:43:01] Dr. Sharp: I, well, I 1st ask what they're sending the school to begin with. Is it the school lunch? Is it the, is it home? Is it home based foods? If it's school lunch, I'd might plan for that. If especially the child selective, I might look at the menu and say, is there really anything the child can eat anyway?
[00:43:18] Because it might be unrealistic for them to go through the lunch line. I would then as a therapist practice the foods from the food list from the school if eating, if the school lunch is the way to go, I would then focus on like, we're going to work on these foods, we're going to, we're going to have you practice and treatment actually eating the foods that are the school lunch, and then we're going to pick a day that you're going to go to school and actually order the foods and do that.
[00:43:38] If school lunch is not on the table, and they, and they send foods from home, Then I would be making sure we're darn sure sending foods that we know the child really likes and is highly motivated to eat. Mm-Hmm. . So we establish, and then I would establish some type of a monitoring system with a teacher that's saying like, did he eat it?
[00:43:54] Yes. No. And that there, there, there's, somehow, there's a way to track how much food's eaten and how much variety he's eaten. And then I might come up with a reward system either way, like I'm a big fan of, of some type of reward system for success at school so that it ties like you do this work at school and then you come home and you earn something.
[00:44:12] Madi Metcalf: And so this kiddo has access to both school and home food. And so, oh, and he gets upset about 20 minutes prior to going to lunch. At times, a student gags and vomits prior to eating. Is this. Kiddo getting services outside of school for feeding. 
[00:44:27] Dr. Sharp: No, they're not. So this kid sounds like an ARFID kid, like a kid who's so he might be overwhelmed by the sensory nature of the cafeteria with all the sights, smells of food.
[00:44:40] It could also be the kids overwhelmed by the social nature of food. It, so I might recommend that the IEP, if there is an IEP, I don't remember if you said that, if that we conduct the eating actually occurs somewhere separate. And that they eat like in a private area that is separated from the cafeteria.
[00:44:57] And then if there's a social need. After the kid eats, then you could send 'em to the cafeteria or you could incorporate the social by having a smaller group of peers eat with the child in a separate area. But I mean, the cafeteria, I don't know if you've been to a high, a, a, a kid's cafeteria. They're loud.
[00:45:13] Mm-Hmm. . They're, they're obnoxious, they're stressful. I don't, I mean, I don't, I, I wouldn't eat with my kids when they were little. I didn't have a good time. So like, I, I wouldn't expect an anxious eater to have a good time either. 
[00:45:24] Madi Metcalf: Another good resource would be Episode 2 of Making Sense of Selective Eating with Lily Gullion.
[00:45:28] We go into depth about feeding in the schools, accommodations that you can work for, which includes moving them to a smaller area, that sort of thing. But I also might refer out for additional speech services, get an evaluation, maybe an OT to see if there's sensory concerns or something like that to kind of help navigate that.
[00:45:45] Dr. Sharp: Yeah, I mean, if there's vomiting happening, you know, before that could be a lot of anxiety related to going. I mean, I've had kids. Who also go to the mall, walk into a food court and just smelling the food causes them to projectile vomit. So I think it's important to be looking at this as not just like a it could be broader to your point than just a school issue.
[00:46:05] It could be a very kind of sign of ARFID and or PFD. 
[00:46:08] Madi Metcalf: Mm hmm. Now that there's is the P. F. D. diagnosis. Do you guys ensure that all kids get like that medical screening prior to getting the diagnosis? 
[00:46:17] Dr. Sharp: Yep. Yep. So, we highly recommend that any child who's not eating starts off and see the here. Let me get back problem with M.
[00:46:26] D. S. And I don't provine. I apologize. I know for being well, he's on last week. Apparently the problem with M. D. S. Is they don't mhm. They don't take it. They're not as worried about things as we are. And I think that's because when you're a physician, you're the main outcome that you're trying to prevent his death, right?
[00:46:42] Like that's what you're trying to actually, like, keep patients alive. So sometimes, like I'll give you an example. They insert a feeding tube and they say, job done. I gotta wait for the kid to eat. But we're like, Hey, how are you gonna get him to get off the tube? Right? So what I say that is we highly educate our provider group that we work with to say, this is weird and it's weird because of this, right?
[00:47:07] Like, and we need you to be paying attention to X, Y, and Z. And so they'll be like, oh, I didn't know I should be considering a scope for or I didn't know that. Like, you're concerned about potential food allergies, or I didn't, so, you know, we go a little bit overboard because my GI doctor will say to me, you would, you would scan for brain cancer before you would, if we can't tell you that there's an organic issue.
[00:47:29] So we're always wanting to understand what triggered the maladaptive relationship with food or the inappropriate relationship with food so that we can feel good that there's, we don't want to cause harm, right? You don't want to make it worse by, by doing behavioral intervention or any type of exposure therapy to a child who shouldn't be eating to begin with.
[00:47:47] Madi Metcalf: I, and anytime that I refer a patient out for a medical in my referral, I write a very in depth referral. I'm like, hi, we have, well, I don't say hi, but I'm like referring this patient for GI. We have all of these symptoms. Please refer, or please like roll out any GI disorders, including, but not limited to delayed gastric ending EOE and kind of list out a couple of things just to be like, I really want this to be a full workup, please.
[00:48:13] Dr. Sharp: Yeah. Yeah. It's because they'll, they look at the growth chart. They, they, they, they're not, they're, they're not as they're, cause they're, they're looking for like major disease states and I don't think that they're necessarily viewing a pediatric feeding disorder as a disease state. 
[00:48:29] Madi Metcalf: And it's so sad that that's the case.
[00:48:32] I'm so thankful that I have a really awesome PFD savvy GI in my area that has just recent, I think he's been here for like a year now and he's been fabulous, but it, I know that hasn't been the case in our area because the number of patients that I have where the parents come in and they say, My child has never left the growth, like their growth curve.
[00:48:50] They've always been like with the normal limits, but I'm so worried about their eating. They only eat this many foods. We have all of these like constipation, burping, reflux, like whatever going on. But because they were hitting those numbers and they were checking those boxes, the parents just got told, Oh, well, they're just picky.
[00:49:07] They'll grow out of it. Or, well, you know, it's fine. Their weight's fine. That's all that matters. Just keep presenting food to them. 
[00:49:13] So I'm, so hopeful that is, you know, the PFD diagnosis gets, you know, it's just around for a little bit longer, more research comes out and more awareness is gained that hopefully that will start seeing a shift in that.
[00:49:27] So I know that we've touched on this a lot throughout, but, and just like, is, is there a distinction between ARFID and like PFD selective eating that you can say, or is it really just kind of a complex, messy picture that you have to So that gets back to those buckets that our fit is really a heterogeneous diagnosis that involves lots of different relationships with food.
[00:49:52] Dr. Sharp: You know, the, the kid you described, it's always been, you know, a food selective kid. They usually they're unique in many ways because they, they, they can chew food. They're usually self feeding so they can eat, which for kids on feeding tubes, that's amazing to be able to eat. Like, wow, you actually know how to chew and eat food.
[00:50:10] And so what they're normally doing is they're eating a very narrow range of foods. It tends to be a gravitation towards starches, fats, processed foods, and a rejection of fruits, vegetables, and healthy proteins. And the reason we think that's occurring is because nature makes variety. And human processed foods make consistency.
[00:50:29] So a goldfish tastes like a goldfish unless they change the recipe. And then it throws the kid with food selectivity off. But the other point I always like to make when I'm talking about this is that food selectivity is not picky eating. And I know picky eating is a good way to get people to like wrap their head around food selectivity.
[00:50:46] But picky eating is a normal developmental process that occurs for every kid. Beginning around age two to age six, what I think is happening with the Orphid picky selective eating kids is that they're not growing out of it. They go into it and they never come out because they have a, a C either a sensory profile or a, a lack of motivation related to eating, and they're stuck in this, this narrow range of foods.
[00:51:11] They're growing fine. So nobody's raising flags about it, but we've done one of the things we do clinically, and this is a standard of care in an eating disorder clinics that I've learned is we're doing increased bone scans, where we're looking at the impact of a narrow diet on the child's actual bone development.
[00:51:26] And we know from like the anorexia and the bulimia research that's done in eating disorders programs that that restricting diet can lead to bone or bone growth. And we're finding that in our selective eaters as well.
[00:51:39] Madi Metcalf: That is pretty significant over a period of time.
[00:51:42] Dr. Sharp: Well, go ahead. 
[00:51:44] Madi Metcalf: Oh, no, you're good, you're good. Go ahead. 
[00:51:45] Dr. Sharp: I was going to say, I mean, we've also seen scurvy you know, scurvies of item. You know, we got our 1st case of scurvy about 10 years ago, and it was a kid with autism who only ate 5 foods and drink water.
[00:51:57] And we wrote a paper about it subsequently about, like, scurvy was being seen in multiple hospital systems across the country, and they treated each scurvy cases unique. They were like, hey. This kid shows up, he's not walking because apparently not walking is a sign of scurvy or one of the symptoms of scurvy.
[00:52:12] And they spend time, they admit the kid to the hospital, they're trying to figure out why doesn't he walk, they think it's neurological, they think it's this. And it turns out the kid eats no fruits, no vegetables, and is developed scurvy. And so I think going back to that medical overlooking the feeding issue, it's not usually until like week two of the admission in the hospital, they ask the kid, the family, what does he eat?
[00:52:30] And they're like, oh, only three foods. Like, you could ask that to begin with and figure it out. But it's because scurvy is not something you think about in the modern, modern world. 
[00:52:39] Madi Metcalf: Wow. That is so interesting. And so sad. So how much do you guys promote diet variety and expansion in your programs? 
[00:52:49] Dr. Sharp: So, you know, the typical, when you read this model of care, it's usually something between 12 to 16 foods.
[00:52:55] But we want foods from all food groups. You know, if you've got healthy grains, if you already, if you already, well, if you have enough, your carbs already, we, but we definitely got fruits and vegetables and healthy proteins are our three main areas we want to make sure we're on board. We want foods to be meaningful.
[00:53:11] We don't want them to be foods just because, like, we don't want you working on different varieties of, of, of chicken nugget unless the child's so rigid that you can't, you have to start with working on variety of chicken nugget before you can get to a variety of something else. But we want to, we want it to be nutritionally meaningful is the most, like, the most Summation of our approach is that we, and we typically add 16 foods within our treatment program by the time the child's done with with us.
[00:53:39] Madi Metcalf: That is awesome. And they're like, consistently happily eating those 16 foods by the time that they leave. 
[00:53:44] Dr. Sharp: Yes. Plus a nutritionally complete drink if we need to. 
[00:53:47] Madi Metcalf: That is so neat. Again, I know this is like really broad question and it'll vary based on the patient sitting in front of you. But what do you do with the kids that just don't have a desire to eat?
[00:54:00] They don't enjoy it. They're not interested. Yeah. Rather not ever eat again. 
[00:54:05] Dr. Sharp: So I'm going to, I'm going to bring up my eating disorder colleagues. So they've done some really cool studies and they've shown that the, I'm going to call them the ambivalent kids, the kids that just don't care about food. 
[00:54:14] They actually have a lower level.
[00:54:16] This is from the research here. They actually have a lower level of ghrelin, which is a hunger, a hunger hormone that promotes hunger in satiety. And, and we know that that lack of motivation is probably actually being biologically driven. So the way that we approach it is we, we treat it as food is your medicine.
[00:54:34] You, and so just like you got to take your insulin, just like you got to take your, if you have ARFID or PFD and, you got to eat. And so we set it up like, I know it's not pleasant, but you got to do this routine on a consistent basis, unless you just want to be fit, you know, feeding tubes are a vehicle to meet your needs.
[00:54:55] And unless you are okay with feeding yourself via feeding tube, like I started off talking about the dad who got off the feeding tube because he was motivated. He probably had the ambivalent ARFID as I call it. But yeah, I mean, it's, it's treating it as like, you gotta do it or you gotta go through the medical intervention.
[00:55:10] And it could be that you say, you know, you can get it from food, you can get it from formula, you could drink, you know, PediaSure, you can get a feeding tube, but these are your options. And we lay it out on the table for the ambivalent kid. 
[00:55:21] Madi Metcalf: Can you spell the name of the hormone for us really quick?
[00:55:24] Dr. Sharp: Ghrelin. And I'm a horrible speller. 
[00:55:27] Madi Metcalf: Oh, let me see if I can Google it. 
[00:55:29] Dr. Sharp: I think it's G R E L I N. Ghrelin. But look up hunger hormone and you should be able to find ghrelin.
[00:55:38] Madi Metcalf: So for people who are listening, it is G H R E Oh wait, so sorry. Okay. I can't spell on top of the time. G H R E L I N. 
[00:55:49] Dr. Sharp: There was an H in there. Yep. 
[00:55:50] Madi Metcalf: Yes. Sneaky H. Gotta love English. Man, so there might be like once again, kind of falling in that medical domain, like a biological, physiological reason that these kids aren't wanting to eat that goes beyond just maybe being like, Okay.
[00:56:06] Cause my brain was kind of limited to like, Oh, well, there must be a medical issue. And then if there's not, then it's just purely psychological because they've had a negative experience their whole life. 
[00:56:16] Dr. Sharp: Yeah. And that's why I partnered with the eating disorders community. And I joined the, you know, I never thought I'd say I'm on the editorial board of the international journal of eating disorders, because I said, I don't treat any disorders, but I'm on it now.
[00:56:27] They've really learned three things, and I'll, I'll, I'll highlight my, my, my colleague, Jenny Thomas at Harvard, who really led this, but they found that ARFID, at least in older individuals, has three etiological drivers, the lack of the ambivalence driven by ghrelin, so that, like we talked about, so the ambivalent, I'm ambivalent to food, I'm afraid of food, either from a traumatic event or some type of anxiety disorder or a conditioned food averted, what it's like I talked about earlier.
[00:56:53] Or I have high sensory sensitivity to food and those three variables can be overlapping, but they found almost every individual is one of these, these categories. 
[00:57:05] Madi Metcalf: Oh man, so interesting. And again, like this, we just got the ARFID diagnosis in 2013, PFD in 2019, like what more are we going to learn as we just kind of continue to like gain momentum?
[00:57:17] Cause that's still pretty recent. Wow. So for those kids, you just, have you found any harm in treating it as that like prescription for these children? And Or like, does it damage their relationship with eating, or does it kind of put it in a more tolerable headspace for them? 
[00:57:40] Dr. Sharp: It, it, it, the guy, the idea is tolerance.
[00:57:42] It also is about removing the conflict between the parent and the child. So oftentimes the parents are way putting stress on the kid to eat, and we try to normalize it through psychoeducation being like, He probably has, And what I'm going to call ambivalent ARFID because food just not as jam like that.
[00:57:57] And I use the word jam twice, but but not motivated to eat, doesn't really enjoy eating. And so we have to treat it like you got to do it. And so it's your medicine and it's time for your medicine. And so, and that's a different way to frame it than like, don't you like food? Let's let's get you to enjoy eating like that.
[00:58:14] It's not feasible for some kids. 
[00:58:16] Madi Metcalf: Yeah. Oh man. So interesting. Do you have any tips for therapists that might be in areas where they don't have a strong feeding psychologist in their area? 
[00:58:30] Dr. Sharp: I don't have tips yet. But let me go back. I have tips. I think training is needed. We know more training is needed.
[00:58:36] We're going to, we have, we are working to with feeding matters on education, the 1st thing we're working on. So you'll see some of that hopefully come down the line. Me personally, I'm working on a training curriculum that we hope to offer. We piloted it more. We're piloting it right now. It's geared toward community based providers to be able to provide more robust treatments.
[00:58:55] It's not available yet. I said, we're piloting this summer to roll it out so that we can help more and more providers. That's still not going to, that's still not the ultimate, you know, I think. What we learned from community providers is they're usually having to train themselves. So what I'd love to see is a, is a unified, more unified field, less camp based field.
[00:59:15] And I think to your point, when you're in the field doing it, none of these like camps necessarily make complete sense. Right. Right. You're doing, you're like, this doesn't really feel exactly right. And so I think the piece of advice I can give you is be eclectic and grab little pieces of what makes sense.
[00:59:33] And make sure it feels good about what you're doing. And it's not a reaction to some other, you know, experience you've had, but make sure it's logical. You know, I think responsiveness has some value. I think behavioral intervention has some value. I think I think S. O. S. You know, as a branded treatment has some value, but none of more, you know, you should acknowledge the value of each one of them and none of them are holistically appropriate for every children.
[00:59:59] Madi Metcalf: Yeah. One thing that I found is what I do with one child is going to be so amazing. And I'm going to be on my a game and feeling so good walking out of that session, and then I can turn around and I can do that exact same thing with another patient and it will blow up in my face. And so like, you just have to kind of.
[01:00:16] What I'm finding is like, you just have to kind of take bits and pieces from all the different trainings and approaches that you learn about and fit them together that in the way that's going to be right for that patient sitting in front of you. 
[01:00:27] Dr. Sharp: And then I think there should be a willingness to refer to an intensive program when you need to.
[01:00:33] And we take kids from all over the country. We're working with the Ronald McDonald House here to build a Ronald McDonald's feeding aspect to their new program. Where families stay and they have a feeding specific, like, suite to be able to feed. I say all that, I can share another paper that shows you every program in the United States, that we have a bunch of publications that we'll give out as part of this.
[01:00:53] But we do have a landscape paper that lists out every intensive program in the United States, because we worked with two organizations to figure out who's out there doing this and what do they offer. 
[01:01:05] Madi Metcalf: Let's see, going to see if I could find it really quick. 
[01:01:09] Dr. Sharp: It's like intensive feeding intervention. Intensive.
[01:01:14] Madi Metcalf: Oh,
[01:01:16] I have intensive multidisciplinary feeding intervention for high risk infants and then. 
[01:01:21] Dr. Sharp: That's, that is, yeah, I see what you found. 
[01:01:26] Madi Metcalf: Intensive multidisciplinary feeding intervention for patients with ARFID disorder associated with severe foods like, I don't think that's the 
[01:01:33] Dr. Sharp: Yeah. Treatment landscape. Let me type treatment.
[01:01:37] Madi Metcalf: To get a patient, 
[01:01:38] Dr. Sharp: I found it. It's, it's, the article's called, Intensive Multidisciplinary Day Programs in the United States, a Report Regarding the Treatment Landscape. Intensive multidisciplinary feeding day programs in the United States. 
[01:01:51] Madi Metcalf: Got it. It is in the chat. How do if we have a patient on our case that we think would benefit from an intensive program?
[01:01:57] Is there an application process. Process that you go through, 
[01:02:01] Dr. Sharp: we, we just take referrals and then we, we, you know, like, we had a family from New York recently. I, I sometimes will personally work with the family to say, because they're flying down here. They're going to live down here. They, like, it's a huge.
[01:02:16] Huge commitment. But you know, but what you'll see on the paper, and we have this great map in the paper, at least I think it's great. The feeding matters help me with is we show where these programs are located. They tend to be located in the East. Eastern part of the United States, they tend to be clustered in the mid Atlantic.
[01:02:33] But there are programs that are probably. Within 2 hour driving distance, at least in the Northeast for a lot of a lot of families. We're, we're pretty much in the Southeast except for Florida and, and Wilmington, North Carolina. But that, that's, I mean, in the paper we described, there needs to be more of these programs.
[01:02:51] There's not enough.
[01:02:53] Madi Metcalf: Oh, man. How do you start a program like this? 
[01:02:57] Dr. Sharp: It's not easy. And you need a lot of institutional investment. 
[01:03:00] Madi Metcalf: Mm hmm. 
[01:03:01] Dr. Sharp: It's expensive to, to have a multidisciplinary team all operating under the same roof. 
[01:03:07] Madi Metcalf: A dream, though. Wish we could have one of these in every state going. That would be so neat.
[01:03:11] Mm hmm. Well, Dr. Sharp, I thank you so much for your time this evening. I'm so happy that we were able to have you on the podcast because I learned so much from you this evening. You opened my mind a little bit more to the cognitive approach to therapy. And I am going to reach out to some psychologists in my area to see if I can find some good psychologists to bring on my feeding team here.
[01:03:39] It was just super great and eye opening, and I loved learning about the psychologist's role in the management of pediatric feeding disorder and ARFID. As a reminder, everybody tune in to the psych summit that Feeding Matters is putting on. It's going to be so interesting. And yeah, do you have any final thoughts or closing words, Dr. Sharp? 
[01:03:58] Dr. Sharp: No, I appreciate you having me. 
[01:03:59] Madi Metcalf: Yeah, absolutely. Thank you again.
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