[00:00:00] Speaker A: May is PFD and ARFID Awareness Month and Feeding Matters will be celebrating and engaging the community with weekly themed content. We'll have expert led Instagram lives, podcasts, resources and a whole lot more. We're going to get informed, get deep, get loud and get local about pediatric feeding disorder and avoidant restrictive food intake disorder. So join us on on eating matters on Instagram.
[00:00:29] Speaker B: Presented by Feeding Matters with.
[00:00:33] Speaker C: Host Jacqueline Peterson and Dr. Haley Estrom.
[00:00:39] Speaker B: Feeding does matter.
[00:00:42] Speaker D: All right, let's get into feeding does matter. My name is Jacqueline Peterson and I am here with my co host, Dr. Haley Estrom. Hi Haley, how are you doing today?
[00:00:52] Speaker C: I'm good, Jacqueline. How are you doing?
[00:00:54] Speaker D: I'm doing well. It is Awareness month is upon us and we have something very, very exciting for this awareness month. We have been doing PFD Awareness month for several years now and for this year, May is going to be PFD and ARFID Awareness Month. We know that we need to raise awareness of PFD as well as ARFID just because of so many myths that are out there, misunderstandings that are out there, the need to continue to collaborate between the feeding disorder and the eating disorder field. We really wanted to make Awareness month about both PFD and ARFID and really look at how does feeding and feeding disorders evolve over the lifespan. And so this May is going to be really exciting. We've got a lot of great things for you at Feeding Matters, so so join us on our newsletter, join us on our social channels. We've got themes per week. The first week we're going to really talk, you know, a lot about PFD and ARFID and just general information. Then we're going to get a little bit deeper and then we're going to get a little bit louder because this month is all about like, how can we make sure that we're like screaming this from the rooftops in the mountain high. And then the last week we will get local and figure out how can we do outreach to earlier identify and better support support our kids, patients and families. So I am really proud to introduce Dr. Jenny Thomas, who we met through looking at our Navigating the Overlap initiative with PFD and ARFID because Dr. Thomas is such a huge leader in the ARFID research and eating disorder field in general. Like, I've always been really grateful to interact with Dr. Thomas and yeah. So.
Hi, Jenny, how are you doing?
I don't know.
[00:02:51] Speaker B: Welcome.
Thank you. I'm excited to be here. Hi, Haley. Hi, Jacqueline. How are you guys?
[00:02:58] Speaker D: We're doing pretty well.
[00:03:00] Speaker C: Good. We're really glad to have you and to have had you be part of these efforts with the consensus and yeah, it's just really exciting to have you be part of this awareness month too. And with the kickoff. This is excellent.
[00:03:17] Speaker D: Well, and hopefully, like I can build over the years too. And that's what we've seen with PFD Awareness month is like, it continues to build and like that's what awareness is all about. And that's why we, we felt like, especially after a lot of the work that we've done together and with the consensus paper and everything else, we couldn't do PFD Awareness month without acknowledging ARFID and without like thinking about what does awareness look like for ARFID as a feeding and eating disorder. And so it just felt like it was the necessary thing to do to be collaborative in that way.
[00:03:52] Speaker B: Awesome. Excited to collaborate.
[00:03:54] Speaker D: Perfect. I figured we could just start by you sharing a little bit about your current role, your background, and then maybe how you found yourself as a leading expert in this, this field in particular.
[00:04:07] Speaker B: Sure. So let's see. I'm Jenny Thomas. I'm a professor of psychology in the Department of Psychiatry at Harvard Medical School and I co direct the Eating Disorders Clinical and Research program at Mass General Hospital. And currently most of my research focuses on the neurobiology and treatment of avoidant restrictive food and type disorder, or ARFID, mostly with kids ages 10 and up and then as well as adolescents and adults.
[00:04:35] Speaker D: Wonderful. And your background in terms of did you kind of start in eating disorders and find your way into to arfid? And I know you were part of a lot of the ARFID initial conversations. Tell us maybe a little bit more about that evolution for you in your career.
[00:04:51] Speaker B: Sure. So when I was growing up, I was a pre professional ballet dancer and there was always a lot of pressure around body image. And that was, I feel like before there was a lot of awareness that you're not supposed to like tell kids that they need to lose weight and things like that. So unfortunately that was part of my story. And so I decided when I went to college that I really wanted to study psychology and then to get my doctoral degree in clinical psychology because I really wanted to help people with eating disorders. And at that point I was thinking more of eating disorders in a traditional sense like anorexia nervosa or bulimia nervosa, and more of the eating disorders that you might think of having body image components to It. But as I was going to my clinical practice, I would able to see that there were lots of patients that were coming in for care that didn't actually fit the mold of what you would think of in terms of an eating disorder. So maybe people who were having difficulty eating, but it was because they weren't hungry or they had choked on something or they were very selective on their eating. And there wasn't a lot of research about that at the time with. With the type of age group that I was seeing, because I should clarify that these were mostly adolescents and adults at that time. And so in 2013, Arfid was added to the Diagnostic and Statistical Manual for Mental Disorders as a. A diagnosis. And I thought, oh, wow, I've. I've already been seeing these people all along, and now they have a name. But part of how I got connected to y'all is because there was a name for it within the eating no disorders field, but not a lot of research and not a lot of information about how to treat people. So people would come to our clinic and say, I think I have arfid. But there wasn't necessarily a, you know, a protocol for how to support them. And so I definitely learned a lot from folks in the feeding disorders field.
However, some of the feeding disorder work was really focused on more really young children. You know, so telling someone that they can take a bite of food and then they can go play wouldn't necessarily work for a teenager or for an adult. So it became kind of my mission then to try to figure out how can we age up some of these interventions, what might be appropriate for an adult who's struggling with some of these feeding difficulties that we often associate with young children, but really do see across the lifespan? Yeah.
[00:07:17] Speaker D: Thank you. It's just so interesting how, like, that evolution happens, because I think that we're not always used to seeing how fields emerge. And the critical point that we are at with ARFID and even with PFD is it's still such an emerging field that there's so much opportunity, but also just so much that hasn't happened yet, that we end up seeing patients that need a lot of help and don't have answers. But it's great to be able to have individuals and thought leaders and academics like yourself who are really leading the way to how to conceptualize this, how to think about treatment and how to research it so that it can be leveraged by more and more people and individuals and families. Since it is awareness month, maybe give us an overview of ARFID in general, sure.
[00:08:05] Speaker B: So basically, ARFID is when folks have a difficulty eating enough volume or variety of food and it has to cause problems for them. So it can't just be like somebody sort of selective or picky. Like, for example, I really don't like mayonnaise, and my colleague Helen Murray does not like chocolate, which I was very surprised to learn. I know. I was like, I don't know if I can still collaborate with you.
[00:08:32] Speaker D: Research is a critical.
[00:08:34] Speaker B: Critical.
Right. But. But luckily she likes.
[00:08:38] Speaker C: She can eat the chocolate, she can eat the mayonnaise, it'll be fine.
[00:08:41] Speaker B: I mean, that's true. Actually, I don't know if she likes mayonnaise or not. I'll have to ask her about that.
[00:08:45] Speaker C: Well, I mean, someone can.
[00:08:47] Speaker B: I guess the point is that, you know, lots of people have food preferences and. And that's on the normative spectrum. But when it comes to arfid, it has to be that either someone's not eating enough food or different kinds of food to the extent that it's causing a lot of problems for them. So either they're not growing or they're not gaining weight like you'd expect. They might have nutrition deficiencies because they're not getting enough nutrients. They might be dependent on tube feeding or supplement drinks, or it might just cause a lot of problems in their lives. So when it comes to adults, for example, I've worked with young people who are away at college and then they can't find anything. They feel safe eating in the cafeteria, and so they have to come home and aren't able to really take part in college or this. Another patient I was treating was just such a nice guy, like, really personable, but he hadn't been on a date in seven years because he was just too embarrassed. Mostly he ate French fries and saltine crackers, and he was just really nervous, like, what might a prospective partner think of those eating habits? And so it kind of caused him to seclude himself, even though, you know, he had this great personality. And ultimately he was successful in treatment and did start going on dates again, which I was excited about. But in the case, there can be a lot of psychosocial impairment and really prevent people from just living their lives to the fullest, you know, in school, in the workplace, or with relationships.
[00:10:08] Speaker D: Yeah. How have you seen it evolve since it first came out in 2013 and as there's been more research.
[00:10:16] Speaker B: Yeah, Well, I think that, you know, the demographic of ARFID seems to be different from other eating disorders. So I guess where I do, as the director of eating disorders clinic, we see people of all ages 10 and up. So most ages all the way to older adults and both sexes and, you know, across all different race, ethnicities, sexual orientation, what have you. But I would say that the modal patient probably was like a young woman, like maybe high school, college, young adulthood, maybe with anorexia or gleaming nervosa. And certainly we did see men, but it was a little bit more rare. And I think with arfid, we've seen that it really affects both sexes fairly equally. So one trend in our clinic is that we've been seeing a lot more boys and men, which has been really interesting. And it's interesting to think about why that might be that the shape and weight eating disorders are much more effective women, and then ARFID is more equal.
[00:11:17] Speaker D: I think that's so interesting coming from, like, our perspective, too, within pfd, because we're so used to it always kind of being that split. You know, that is a question that we get a lot, is prevalence, questions, who does it affect questions. And we have been used to that split. So for us, it wasn't like that surprising as we think about our kids aging and getting older. And I think that's, for us, one of the biggest things as we've come together is like, we've just been really zoned in on pediatrics. And what does that look like as the years progress and as that gets harder and harder and impacts function in daily life more and more?
As you've been working with this population and with arfid, what are. What do you see as some of the myths or misconceptions that either are happening publicly or that people coming into your clinic maybe have before they talk with you?
[00:12:13] Speaker B: Well, I feel like one myth, and I hate to even say this, I don't want to perpetuate it, but it just seems like it's so out there, is that people who have ARFID are just being, like, stubborn or picky, doing it on purpose. So I remember distinctly giving a presentation to some colleagues that were in endocrinology. I think they were in another field of medicine apart from psychiatry. Sure. I talked about arfid and one of the colleagues, Nadia, and said, oh, well, I bet they don't have that in Africa or other countries where, you know, food is scarce, because this is like a privileged position to be able to just not eat if you don't want to.
And I. I felt pretty offended by that, actually, because I have been able to See, you know, colleagues from all over the world. I'm sure you have, too, in your work colleagues who share that they see folks with ARFID and on all different continents, all different cultural backgrounds, which has to lead me to believe that there's something biological that's underlying it. I think that it can be shaped or have, like, a cultural manifestation depending on available food, but that people are not, you know, choosing to have it by any means. So I think that that would be a myth for sure.
I think another myth is that people with ARF at all eat the same thing as each other. So there are certain foods that might be pretty typical, at least in. In my clinic, you know, we get a lot of folks that like to eat vanilla ice cream or french fries or Mac and cheese, but that certainly isn't true for everyone. And going back to that global piece, it's been really cool just collaborating with people around the world and seeing that foods that people might eat, even if they tend to be within carbs or. Or dairy, for example, it'll be shaped by the types of foods that are just available in the environment or culturally acceptable. So, like, my colleagues in Dubai said a lot of their patients rice, and a colleague of my Netherlands said that a lot of her patients eat this thing called hoggle slag bread, which I haven't gotten to try. It sounds really good. It's like toast with butter and chocolate sprinkles on it.
Oh, yeah. But it's just something that I guess they have a lot in the environment, so people will feel that that's a safe food that they can consume. Yeah. So I guess the myth would be that everyone with ARFID eats the same thing, but I think it can be shaped by what's familiar in the environment that becomes safe for people often.
[00:14:49] Speaker D: Yeah, I think that's very true. And I. You know, to your first myth, I think that's something that we also learned in this process is like, we as coming at it from the pediatric feeding disorder perspective, had fought so long for PFD to be validated and to be considered real and all of these things, and then to also find out that, like, you're kind of facing that same journey of, like, you know, arfid may be a mental health diagnosis, but that doesn't mean it's not real, and it doesn't mean that it's not worth paying attention to is totally.
[00:15:27] Speaker B: And I think another myth that probably you guys would encounter even more so, but we do as well within arfid is just that it's the parents fault that somebody has arfid?
So I think I'm lucky to come from a tradition of psychiatry where we can be skeptical of that myth, because almost every disorder, when it first gets its debut, people immediately will blame the parents, usually the mother. But, you know, like, with autism, for people said, oh, it's like mothers, you know, who are neglectful or with anorexia, it's mothers who are, like, paying too much attention or too enmeshed, you know. But I think we know enough now that if you have a child that has a mental illness, they will draw out behavior from you as a parent in your hope to take care of the child, you know, so if anytime you present a certain food to your child and they scream and run away from the table, you're gonna not present that food to them anymore, that doesn't mean it's your fault that they did that in the first place. So I think that's something that we come up with against a lot as a myth, too.
[00:16:33] Speaker C: Yeah, absolutely.
[00:16:34] Speaker D: Yeah. And I. I agree, because that's often we, like, think about autism as a similar journey with pfd of it being a, like, super complex condition, a condition where parents are blamed at first. And I agree that that's a myth that's out there that gets perpetuated. And I think it's both perpetuated in a way that is very overt and then other ways that are more subtle that you kind of have to work against as well.
[00:17:05] Speaker B: Totally. And I feel like that's why it's so important that we have lots of women in health care and women in science. So I'll just share that. So you guys know, I'm a mom. I have two kids, or five and eight. But when my son was first learning how to feed, when he was, I guess, you know, like six months, nine months a year, he really would accept all foods. And so I was like, oh, it's probably because I'm this ARFID researcher. He's such a good eater. But then when he got to be one and a half, two, he started getting pretty selective on what he would eat. And he did go through a phase where he really just wanted to have, yeah, like, Mac and cheese nuggets. And he's eight now, so he's a lot more adventurous and telling me all these things that he wants to try. But what I came to learn, you know, through my work, is actually that's like, the exact trajectory that most kids will follow, you know, like being pretty open when they're first eating and then getting more selective. And so I think that was just like humbling for me to see. It's not like knowing about Arfid can make your kid not be selective in their eating and that it's pretty typical. And you know that there's nothing that I did and anyone listening, there's nothing that you did to cause this to happen to your child.
[00:18:16] Speaker C: Yeah, I had the same thing, Jenny.
My first child is the one who had pfd. He's had pfd, arfid and he's still currently tube fed. But then my second child is the one who let me know that I could do this Right. And then he would eat and he was fine and he actually would select broccoli over a french fry when he was first eating when he was really little. And then he won't eat broccoli today. Like he won't eat asparagus today. He won't. And he's 15, like, so whatever, you know, like he will eventually, but he, he doesn't. He will absolutely always choose the french fry first today.
[00:19:02] Speaker B: Yeah. Who knows, as he expands and gets older, like maybe he'll be interested in trying those other things.
[00:19:07] Speaker C: I mean, who knows, like, but I do think I'm not going to stress over it though.
[00:19:12] Speaker D: Yeah. And I think that's what makes it challenging though to identify like when there is disordered feeding and eating that's present that we need an intervention for or evaluations for other things because there is totally a picky phase and we all have our preferences. And I think that that conversation, at least I found is always really hard to, you know, PFD and arfid. It's not picky eating, but there is some picky eating to be expected. And it's like, how do you draw the line and where does that line form? What has been your experience, Jenny? Thinking through the dominant language for kind of eating that seems a little bit off is picky eating. But that can be a challenge to diagnosis intervention too.
[00:19:58] Speaker B: Yeah, I mean, I think picky eating is both so normative and expected and even the term itself is a little bit maybe pejorative. I mean, we've all been saying it, but it sounds maybe kind of negative or judgmental.
But yet when you say it, everyone knows what you mean. So even when I was, my colleagues and I were writing a book for adults with arfid and our publisher wanted us, well, we wanted to call it something like beating arfid, but the publisher said no one will know what you're talking about, like, people don't know what ARFID is. So hence why. Great, you guys have an awareness month.
So they wanted us to call it the Picky Eaters Recovery Book. And at first we're like, oh, I don't know. You know, we don't want to be calling people that they're picky.
But I think in the end, it was the right decision, at least for that pinpoint in time, because it allowed people to find the book and recognize that they may have arfid. Whereas if we'd call it Beating arfid, people might not have picked it up because they wouldn't know what ARFID is.
[00:21:00] Speaker C: Yeah. They could recognize it on the shelf and say, oh, that's me.
[00:21:05] Speaker B: Exactly.
[00:21:07] Speaker D: Okay. To relate to it. And that. I agree with you. That's kind of a moment in time. You almost needed a phase of relatability to it, because maybe in 10 years.
[00:21:16] Speaker B: Beating Arfid, everyone will have. Exactly. And then they'll know what it is.
[00:21:20] Speaker D: Yeah. Yeah. That is the hope. It's like, as you can raise more awareness, the relatability factor becomes. I know this is me, and this is the name by which it goes by.
That leads me to thinking about some of the Navigating the overlap initiative that we have at Feeding Matters, which is just as we've come into this world of PFD and really thinking about the PFD diagnosis and then finding that naively didn't know how far the eating disorder research in ARFID had gone. And so that's kind of, as we talked with you and others in your space, space and field, bringing everybody together to do some of that, the consensus paper, and also all of the other initiatives that I feel like need to come from us coming together as fields. What did you know about pediatric feeding disorder or any of, like, the younger side? Because I know you had said you were looking at the literature first and then kind of stumbled upon Feeding Matters.
[00:22:15] Speaker B: I didn't know anything about it. I had never even heard of pediatric disorder.
[00:22:19] Speaker D: That's okay to say.
[00:22:22] Speaker B: And so I only learned about it as some of these patients were coming to me and explaining these symptoms, that they didn't get hungry or they were afraid to eat. And so I would go on PubMed or Google Scholar, you know, to look for empirical papers about this. And that's how I started learning about pediatric feeding disorder, but also felt like it didn't quite fit because my patients were older, so they weren't all pediatric. But there were so many similarities. And so that's when I started just reaching out to some of the people who'd written those papers to figure out what I could learn from them. And you all that can inform what I do. And I hope too that through that process that maybe you all have been able to learn some new or different things from the eating disorders field. Just because we come at it from a different approach.
Like, one thing that really impressed me is just how multidisciplinary the field of pediatric feeding disorders is. So I think eating disorder field, we feel like we're pretty multidisciplinary as well. But you all have even way more disciplines involved than we do, you know, with gastroenterology and occupational therapy and speech therapy, you know, in addition to the ones that we would often have involved like a dietitian and a mental health clinician and some kind of a medical provider. So I think that was really interesting. One thing that sometimes would come up in the course of my initially treating folks who I was categorizing with ARFID is if there might have been another provider who was coming at it from a pediatric feeding lens and wondering whether the patient needed an intervention from that group of interventions. So something like if they needed to learn how to chew or learn how to swallow. And so that was really interesting because the way I was coming at it was thinking, well, you know, they probably already know how to do those things. It's really just that they're afraid of it.
But then their perspective is like, well, what if they need work on that and it's really a skill deficit problem. I thought, oh, I hadn't really thought of that before. How do we, how do we evaluate that? How do we know if they have those skills? So I think that's been a really helpful thing to learn about and consider and then together think about how would we know when you need to involve these disciplines and how do you know if they have a skill deficit or if it's totally mental health or if it's somewhere in between? And I think that's been really interesting and exciting to see.
[00:24:53] Speaker D: Yeah, I agree, Jenny. I think there's so much to be learned between both fields, sharing with each other, because I think that was even something as like we were in this world. You know, there's a long history of pediatric feeding stuff, whether it's research or long standing programs and all of this stuff. But then to come across the eating disorder and the ARFID informed eating disorder work, there's just so much sophistication in the research and just long held Just a platform to be able to do that. And I think that there can be so much that's learned as the pediatric field is trying to build up that research infrastructure for, for feeding and PFD research. And what does it mean for even like typical feeding development research? I think there's a lot to be learned in that way, I think.
[00:25:48] Speaker C: I totally agree. I think a lot of it. Well, there's a benefit to being, I mean most of it from the. The ARFID side is that it's. The field is unified. Right. I mean it's, it's the one discipline and then on the PFD side it's.
[00:26:05] Speaker D: It is a lot harder.
[00:26:06] Speaker C: So many disciplines. So it's not really a unified approach.
Right?
[00:26:15] Speaker D: Yeah, no, that's true.
[00:26:17] Speaker B: I think it's a great point because within eating disorders, you know, we're a small field, but we are connected academically in ways that I think maybe the feeding sort of field is not, you know, even though many of you all know each other and you share patients, you kind collaborate and you do have your feeding matters conference which is awesome and I love like the co design and inclusion of like patients and families as well as academics. But within eating disorders field we I guess maybe have an even longer history of having eating sort of specific conferences and journals that are specifically for eating disorders. Whereas what I'm thinking about with feeding is that to my knowledge there's not like a journal of feeding disorders. But there is, there are different journals for the different disciplines that might be involved. And so I think then it makes it a little more tricky to come together around the same topic.
[00:27:08] Speaker C: Exactly.
[00:27:09] Speaker B: Okay.
[00:27:10] Speaker C: Yeah. There is not yet a feeding disorders journal.
[00:27:15] Speaker B: I think there's an opening. Haley Estrom, Editor of the new Feeding.
[00:27:20] Speaker C: Disorders it would be an excellent thing.
Also some kind of interdisciplinary training grant for feeding disorders. I've been for a long time. That would be also excellent.
Feeding and eating disorders. That would be great.
[00:27:36] Speaker D: Yeah, and that's so true. That's with the.
We have big dreams, Jenny, where this all goes.
[00:27:48] Speaker B: No, it sounds great. And actually I think another thing in terms of just learning from one another, I think it's awesome that in you're in the feeding disorders field there is so much inclusion of lived experience and patients and families and co design of measures and treatments. And I think that's more of a new concept for the eating disorder field that we've been thinking about how to integrate that and you guys are really leaders in that area. So I think we could learn from that too.
[00:28:15] Speaker C: Because parents and families are the proximal agents for change and intervention within feeding therapy.
[00:28:24] Speaker B: Yeah, absolutely.
[00:28:25] Speaker C: Well, and aren't they also very important for intervention within eating disorders? A lot of the times, yeah.
[00:28:35] Speaker B: The most evidence based treatments for anorex, nervous and bulimia nervosa in adolescents is family based treatment. And in cognitive therapy that we've developed at our hospital, we always will involve families if the patient is an adolescent.
[00:28:53] Speaker C: But when we're talking about the like really like, you know, infants, young children, middle childhood, I mean parent, caregiver, family, it's essential.
So that's, that's why, I mean to have ecologically valid measures and to have the therapies be something that will carry over into the home setting, they absolutely have to have the families in mind.
[00:29:23] Speaker D: But I think we've also learned how important the individual's lived experience is. And for our perspective of having really young children, that's a harder population to hear from. You know, we try to hear from them in many different places. But I think that's what's been really great about ARFID taking off is you've got all these adults who can say their experience and their history and what, what they've experienced themselves.
And I think that's something that we're also trying to incorporate as we try to push for patient and family centered care. And research is very true. How is it just like listening to the family's perspective but also a patient's perspective either in it or as they get older?
[00:30:06] Speaker B: Yeah. And actually one thing that I've been interested in recently, my colleague Evelina Kimbanis and I just co edited a special issue on ARFID in the International Journal of Eating Disorders. So if anyone wants to look that up online, it's available. And there are lots of cool papers, but there were several papers that were surrounding the topic of concordance between parent and child report of ARFID symptoms. So as you're talking about, maybe you really have your finger on the pulse with parents, but you're just now more so integrating the individual's experience. And often what we're finding in the ARFID work is that parents and children don't always agree on the degree and severity of their symptoms. And yeah, so you guys probably just know that from your clinical practice, but we're just seeing it with measures that have been developed. And the one that I think is especially striking for my age range that I work with is that many times parents will rate the psychosocial impairment as being much more severe than what the child will rate. And I'm assuming that may be due in part because the parents are just, you know, trying so hard to provide care for the child that they're really bearing the burden of that impairment. You know, they're making it so seamless for the young person because they're going to multiple different grocery stores, they're calling ahead to the birthday party to make sure there's going to be food available for the child, you know, or they're measuring out all the stuff that goes down the tube. So it's interesting because part of the diagnosis has to do with whether the person experiences psychosocial impairment or not. And so there's a discussion in the. In, at least in the eating disorders field. I don't know feeding disorders as well. But whether the psychosocial impairment on the part of the parents that might be due to the child's eating should count towards the diagnosis of arfid, or whether the psychosocial impairment has to be endorsed and felt by the individual. And yet could the individual always feel it if the parents are being so accommodating to their needs?
[00:32:06] Speaker D: That's really interesting.
[00:32:10] Speaker C: Jacqueline. So within the psychosocial domain of pfd.
[00:32:19] Speaker D: Well, yeah.
[00:32:19] Speaker C: How would you interpret that?
[00:32:21] Speaker D: That's what I was just thinking about, because so much of the PFD psychosocial domain is about the parent, child dyad, and it does make space for how is this impacting the entire family and their environment. The PFD diagnosis was laid on the framework of the icf, and all of that is the complexity of the relationships involved and the environment involved. And so I think from my perspective, from a PFD lens, it's always been like, inherent of just the. The stress and trauma that a family's feeling is. It may look different between parents, between caregivers and the children themselves, but it still means that there's PFD there. And so that's really interesting to think about.
[00:33:14] Speaker C: It'd be interesting to look at that. To look at that study from a PFD lens.
[00:33:19] Speaker D: It would be.
[00:33:21] Speaker C: And that's a really interesting. I mean, that's a fantastic family study to have the discordance of those. Those two.
That's excellent.
[00:33:33] Speaker D: You answered one of our questions, Jenny.
[00:33:35] Speaker C: Because I want to go back and read that.
[00:33:36] Speaker D: We were like, what's some research that you've read recently like, you found really interesting? And I think that that's a clear example of something that leads to further thought and discussion in the field.
[00:33:48] Speaker C: But that's one of the Differences between what, you know, what ARFID and PFD have within the psychosocial realms is that like PFD does have that baked in to be able to account for the caregiver assessment.
[00:34:09] Speaker B: Yeah. And I think within psychiatry, the frame, you know, of course there is child psychiatry, but for the most part, the disorders are based on an individual.
And if anything, I think there's a push away from thinking about how somebody's thoughts and behavior might impact other people, because there has been a history of that being used for the negative, you know.
[00:34:33] Speaker C: Yeah.
[00:34:34] Speaker D: You don't want it weaponized either. Right.
[00:34:36] Speaker B: Like, you don't want to, you want to leave space for people to have certain beliefs. And even if they're unusual, that doesn't mean that they have schizophrenia, for example, or.
Yeah, so I think it's. It's tricky. Like, you want to, of course, honor that impairment that the parents might have, but you also don't want somebody to be pathologized overly.
[00:34:57] Speaker C: So the idea would be to make it so they could have support.
I mean, that, that's how the framework is laid out to provide more support for the feeding situation.
[00:35:10] Speaker D: Well, that really gets back to kind of like that transition between feeding to eating disorder. And I know when we were at the consensus paper, we were talking about like, do we have a clear definition of eating disorders and a clear definition of feeding disorders? And it is almost that individual aspect. I know that there was a good consensus, not consensus enough to make it a clear definition, that feeding was about the parent, child dyad. But so much of feeding is about learning to eat and then you transition and the eating side is that individual focus. And that's for me, how I've been able to think about ARFID as like the grown up stuff of our world.
[00:35:51] Speaker B: Yeah.
[00:35:52] Speaker D: Now, as. As this world evolves, as ARFID evolves, as we get more collaborative with PFD and ARFID work, where do you kind of see this all going or where do you think the future of research needs to go for individuals with a negative association with feeding and eating?
[00:36:08] Speaker B: Well, as you guys may know, I'm really interested in the neurobiology of this. And so a lot of our team's work has looked at brain imaging and looked at appetite regulating hormones within arfid. And I would love to see that age down to really young people.
I do know there are ways to get younger kids interested in doing an FMRI scan.
So I think that would be really cool to do because we have found some really interesting things like for example, with adolescents ages 10 to 23 who we've studied so far, when you show them pictures of food, they have a different response if they have ARFID versus if they don't have arfid. So like, for example, the kids who have that fear phenotype where they're afraid of choking or vomiting, if you show them food images compared to the healthy kids or, you know, the kids who don't have arfid, they have a greater response or reactivity in the amygdala, which is the brain's fear center. So, you know, I guess you could say, why don't you just ask them if they're afraid and they'll tell you, yes, they did. But I think it also just helps for, for society at large and probably for patients, families too, for it to feel more real that this fear is instantiated, manifested in the body, in the brain. And similarly, we've also found that folks with ARFID have significantly higher levels of satiety hormone called cck, cholecystokinin, even at fasting. So when we bring them into the laboratory and they haven't eaten all night and we haven't given them breakfast quite yet, we'll take a fasting blood draw. And kids with ARFID have a level of CCK on average that's about three times as high as kids without arfid. And so it helps to kind of see maybe why is it difficult for them to eat. Maybe it's because they already feel full when they're then presented with food. And even though they're at a calorie deficit, like they haven't eaten all night, they may be underwe, it's still their body is not giving them the same signal as what it's giving the other kids. And so I would love to age that down a little bit and then also to look at whether those things change with treatment. So right now my team is doing a randomized control trial for kids ages 10 to 18.
So if anyone's listening to the podcast and you're in the Boston area in Massachusetts, we'd love to have you come on down. We're randomizing people to either receive treatment nutrition education, or to receive an exposure based cognitive behavioral therapy to see which one is more effective at moving that brain circuitry around the fear. So we're really excited to see what happens with that. And then we'd love to do more work in that area on adults as well. So we're collecting some data on that. And then another area I'M really excited about that. We're starting to look at is the gut microbiomes. So we are collecting stool data from our participants and starting to see that there's a more limited degree of gut flora in people with arfid, maybe down to their limited diet, but that then can have a reciprocal effect that maybe makes them crave different foods and so on. And it would be cool to see if maybe that changes with treatment. So I think it's just really a wide open field and there are so many opportunities for collaboration. Down aging, up aging, these research questions. And I'm really excited for what the future may hold so that we can bring all that back to trying to help patients and families who were affected by our fed.
[00:39:35] Speaker C: What might a study look like in aging it down? Would you start descriptive? Like, would you just start by looking at them first?
[00:39:47] Speaker B: Yeah, probably. One of the things that we've been doing a lot in our studies with older kids and adults is really detailed, structured interviews to look at symptom profiles, like, so to get a sense of people have the fear profile where they're afraid of choking, vomiting, sensory sensitivity profile where they think disgusting or gross, and then the lack of interest profile where they're just not hungry. And I think it would be maybe a first step just to see if younger kids fit into those profiles or not. Because I think sometimes when kids are younger, they haven't maybe developed a narrative or a story to explain their symptoms yet, or they haven't fully developed cognitively that they experience it in the same way that the older kids do. Because part of our neurobiological research is based on, oh, if somebody has a certain phenotype, like fear, they might have a certain brain response like the amygdala, whereas if they have that like low hunger phenotype, maybe they'll have lower levels of ghrelin, like a hunger hormone. But with kids, we might want to first establish whether those phenotypes are even present or relevant, or whether we need to look at it in a more homogeneous way or whether maybe there are different presentations versus what we see in the older, older people. Because I remember, you know, working with a 5 year old who actually got some consultation from our colleague Will Sharp, and it was really hard to tell which phenotype she might fit into. Basically, whenever food was presented, she would just hide under the table, but she couldn't really tell us, is it because you're not hungry? Are you afraid you don't like how it will taste? So I think it would be helpful to see if the phenotypes are manifest, and then if so, if some of the same neurobiology might apply.
[00:41:31] Speaker C: Yeah, that's really interesting. I was just wondering what. What different ways you might be looking at it and if you would only.
If you would only be thinking of it as ARFID or if you would want to open it up to PFD and arfid.
[00:41:51] Speaker B: Oh, yeah. I think opening it up to PFD and ARFID would be great, because I.
[00:41:56] Speaker C: Can think of parallels across PFD and ARFID for the three subtypes.
[00:42:01] Speaker B: For sure. I think that would be great. And then I think we'd need a better assessment, like a research assessment of skill deficits. Because I have been asking a lot of you all in your field.
[00:42:13] Speaker D: I remember that specific measure that we can use.
[00:42:17] Speaker B: So just being a clinical psychologist myself, our field is, like, obsessed with. With measurement.
And so it would be great to have something standard that we could give people to help rule out whether it's PFD or whether it's ARFID or whether it's both, which it could totally be both as well. So I think we'd need that measure too.
[00:42:37] Speaker D: Yeah, I love this thinking of, like, what does it look like to combine and try to figure out, you know, definitely the need for more tools, more measurement, better understanding of younger and older and how that transitions. I think there's a lot there, and I know we've kept you for a while, and we're coming up on time, so thank you. Thank you so much, Dr. Thomas, for joining us today. Especially as we kick off May for PFD and ARFID Awareness Month, we have a final question that we ask all of our guests because we started this podcast, Haley and I, as a way to dive deeper into patient and family centered research and really try to make it a little bit more digestible and applicable for not only clinical populations, but also our patients and families and for them to engage in research and not make it feel so intimidating. Haley, do you want to. That's good.
[00:43:30] Speaker C: What do you see as some of the more prominent barriers to family centered research in ARFID and pfd, and what do you think we can do to overcome them?
[00:43:45] Speaker B: Well, I think ARFID one barriers that a lot of people just don't know what it is and they don't know that they have it. Like, I remember that when we one time we were invited to be on the local news in Boston to just do, like, a brief spot about our research, and I thought to myself, like, well, who really watches the local news? Like, I don't watch the local news. I'm like listening to podcasts. Like you guys are, you know, reading an app of a newspaper.
But, but within being on the local news, talking about our food for like a two minute spot, within the week, we got 100 calls of people who were interested in taking part in the research, who were looking for treatment and even take us. It took us a while to get through responding to all of these folks. Of course we wanted to call every last person who, who had reached out to try to see if we could help. But I think just people knowing that ARFID exists and that there is help for it, that's a barrier and then also an opportunity, which is. It's great that you guys are doing this podcast.
[00:44:45] Speaker D: Thanks. Yeah, I mean, you're saying exactly the reason why this is now PFD and ARFID Awareness Month. It's so important that people are able to know that these diagnoses are out there and have kind of a name and a definition and a reason why they've had this negative association and have had either as an adult, so many struggles and traumas in the past. And what does that look like for them as a family member? If it's, you know, their parent or their caregiver, that's also finding these terms as well. So really appreciate you kicking off Awareness Month with us and look forward to working and collaborating more together. So thanks everyone for listening.
Feeding Matters Infant and Child Feeding Questionnaire was developed as an evidence based tool to promote early identification of feeding disorders. Developed by internationally recognized feeding experts, this online questionnaire, available in both English and Spanish, can help you better understand your child's feeding differences and needs. Take it online for free
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