[00:00:00] Speaker A: When supporting a loved one with feeding differences, it's easy to feel like you are alone at Feeding Matters. Our hope is for you to find the community resources and support that you need through our Power of Two Parent to Parent mentoring program. Parents in need of support are matched with our one of our volunteer family coaches who have lived experience with their own child and can offer emotional support, resources and guidance to lessen the isolation that families face with Pediatric Feeding Disorder or pfd as well as Avoidant Restrictive Food Intake Disorder or arfid.
Families can request a one time phone call or a three month or six month match by filling out the request form on our website. A family coach will make contact via email first and then by phone or text message, typically within two to three days. For more information, please contact us at 623-242-5234, extension 306 or
[email protected] you are not alone.
[00:01:13] Speaker B: Presented by Feeding Matters with host Jacqueline Peterson. Dr. Hayley Estro Feeding Does Matter welcome to Feeding Does Matter.
My name is Jacqueline Peterson and I'm here with Dr. Haley Estrom. And today we're going to be talking about both PFD Pediatric Feeding Disorder and ARFID Avoidant Restrictive Food Intake Disorder. A Historical View. And this is the part two of the PFD Essentials Research Training series that Feeding Matters is putting together for our Family Centered PFD Research Consortium. So welcome Haley.
[00:01:59] Speaker C: Hi Jacqueline. Thank you.
And this is also part of our.
[00:02:04] Speaker A: It's Not Picky Eating.
[00:02:06] Speaker B: Oh, that's right. This is the series It's Not Picky Eating Series Does Matter. Good point.
[00:02:11] Speaker C: Yeah.
[00:02:14] Speaker B: I'm excited to talk about this today because it's a lot of like my history. I've been with feeding matters for 11 years and I consider our founder, Shannon Goldwater to be a mentor.
And I'm just inspired by her all of the time. And so I'm. Yeah, I. I'm excited to talk about our history, but just to give an overview before we even dive into PFD's history, because I don't think you can get to PFD's history without talking about Feeding Matters history, I wanted to share with you and everybody a little bit about our history. So we were founded in 2006 by our founder and visionary, Shannon Goldwater.
We were founded to support infants and children who struggle to eat. One of the funniest things about us is we used to be called Popsicle Center Parent Organized Partnership Supporting Infants and Children Learning to Eat.
I love the name, but I'm glad we changed it.
And then we are. We were guided, and still are guided in a sense, by a medical professional council. And so in that we aim to support families, we really focused on early identification. They were all telling us we aren't seeing these children early enough and we need to be seeing them earlier. And so in that sense, we did a lot of outreach and awareness, but also identify tools support early identification. But I think in all of those, and even when I look back on the historical documents from those days, it was always so challenging to talk about this because you would call it feeding problems, feeding disorders, feeding struggles and failure to thrive, and all these different things that no one would take you seriously. And so I think that's why Shannon had such a good vision for saying that, like, we need to. We need to unify this field a little bit more behind something and behind a name that we can get behind.
And so in the past, we have used many different diagnostic classifications for kind of the same thing. So if a physician was describing this, they would use a medical diagnosis of feeding difficulty. If a dietitian was describing this, they would say failure to thrive, malnutrition, maybe even on the other side of that, obesity. If an occupational therapist or speech language pathologist was describing this, they would call it dysphagia. They would call it sensory processing deficit. They would call it oral motor delay. And if a psychologist was looking at this, they would say, oh, this is a behavior problem, or this is anxiety, or this is arfid. And so for us, that just didn't really get to the big nature of this problem.
It still made it seem like it was this afterthought when it was a huge piece and the foundation for which a lot of other development is taking place.
And so we really said, okay, the diagnostic limitations are that we don't really have well defined diagnostic criteria. So then there's late identification. We're only viewing it through one discipline. When we know that there are multiple disciplines touching this, it becomes difficult in terms of management, difficult in terms of research, and difficult in terms of funding, and then kind of generally impacts and impairs health and disability.
And so that's why, you know, we started to look at working on what do we call feeding problems. And so we aim to build common terminology among all of the different disciplines, knowing that everyone was using their own terminology to describe a similar or same problem. And so we also leveraged a comprehensive framework to look at a child holistically and through the lens of the parent child dyad and Their environment.
And so what did that look like?
[00:06:05] Speaker C: What was that framework that you leveraged?
[00:06:09] Speaker B: It was the International Classification of Function, Disability and Health. And one interesting thing was we didn't originally think of the framework using the ICF originally. So we got 17 professionals together here in Phoenix, Arizona, in 2016, and we. We basically, like, everybody got in a room. Dr. Good Day was leading it, and they were all different disciplines, and they were like, hey, we see this problem, and we see it in many different facets. How can we describe it? How can we name it? What does it look like?
And I Remember Pamela Doddrell, Dr. Doddrell, she's from Australia, and she was trying to share with us that how important the international community thinks about health and how important the ICF is. And she was telling us, like, I know in the US we don't think about the ICF that much, although I know a lot of occupational therapists are more comfortable with it. But she's like, that is. That is a trend that's happening in health kind of internationally.
[00:07:15] Speaker C: And I've often wondered how you all came upon that and. Yeah.
[00:07:20] Speaker B: How you came upon the ICF as the framework. Yeah, I think it was one of the biggest decisions that was made in that room, and Pamela pushed really hard for it. I definitely remember that because I think here in the US we're so used to looking at, like, a diseased state that we forget about kind of that holistic view and what dysfunction look like. And that's what she was trying to help us understand this. She was like, feeding is all about function. And so if we can design this framework around function, then, and think about it holistically, because it's so complex, because it involves their environment, because it involves the parent and child dyad, because it involves so many different things, thinking about it holistically will help us be able to focus on function a little bit better. And so, yeah, I think it was a big move because I don't think many disorders are set to that type of framework or that type of thinking.
[00:08:19] Speaker C: Yeah, it was brilliant.
[00:08:21] Speaker B: Yeah.
Well, I mean, luckily I was just taking notes during that meeting, taking pictures and taking notes.
So they met in 2016, then they developed the paper. They kind of, like, met again in 2017 to finalize some of the critical criteria behind it. And then they published it in the Journal of Pediatric Gastroenterology and nutrition in 2019.
And then what we did next was Feeding Matters in partnership with the AAP and then also had some support from Asha and Aota, were able to get the diagnostic codes confirmed in 2021, so that it was a legitimate condition and that it wasn't just, oh, there's this framework that's developed in this publication, but it actually legitimized it as a condition. And I think that was such a huge win for us.
We had been told by someone, Haley, I don't know if you know this. We had been told by someone, like, good luck. I've tried for 10 years to get a code through the CDC. And they're like, it's not worth your effort. You need to be working on other things. And so for us to be able to do it in two years, I feel like it just shows that this is a problem that we needed to be solving.
So, I don't know. I was kind of proud of that.
[00:09:39] Speaker C: Yeah, that's pretty great.
[00:09:42] Speaker B: So this is pediatric feeding disorder. And if you are following along with it's not picky eating series, you know that we're kind of diving into each of these different domains. So you've got the medical domain, the nutrition domain, feeding skill, and psychosocial. And like we kind of talked about before, it is set to the ICF framework. So it looks at a health condition, a disorder or disease, and really thinks about what are all the contextual factors, what's the activity, what's the participation, what's the body functions and structure, and how do environmental factors play a piece, how do personal factors play a piece?
The ICF is part of the WHO framework, so the World Health Organization for measuring health and disability at both an individual and a population level. So I think it was a big piece of how we think about PFD in a holistic manner.
Now, in terms of kind of the coding side of it, just like the naming side of it, there were all of these codes that were kind of describing the similar or same traits that many different, you know, disciplines are using. Some people were using other feeding disorders of infinity in childhood. Some people were using arfid, some people were using other eating disorders, feeding difficulties, dysphagia, et cetera.
So 2021, the diagnosis comes out, and we're kind of like, you know, working on awareness. And so the diagnosis comes out, and we're like, okay, we need to make sure that PFD becomes a household name. We need to be, like, screaming it from the rooftops. Like, that is where early identification happens. We need to make sure pediatricians know about it. We need to make sure that all of the medical community, no matter what discipline they are, is aware of this. You know, parents before they are, parents need to be aware that there could be a chance that their child struggles with feeding and eating. And so as we're, like, pursuing this awareness challenge, we start realizing that the diagnosis of arfid, avoidant Restrictive Food Intake disorder, is, like, growing in awareness significantly.
And it's really interesting because when PFD came out, we were thinking, okay, this is a chance to kind of unite all of these different diagnoses and disciplines under kind of one umbrella that, like, it's pfd. We think about it holistically, all of these different things. So that's how I always thought about the PFD and ARFID overlap was, like, similar to dysphasia. Dysphasia was out there, and some infants and children had dysphagia, but they also had pfd. And kind of we were uniting it. But I think it became a challenge because of many different things that we'll get into as we dive into this history. But I think it was. It was almost hard to see how fast ARFID gained awareness, knowing that we were trying to do a similar thing with how people were paying attention to pfd.
And I think part of it is PFD is a little bit more complex and how you're describing it publicly. And so we'll get into that. But I thought it would be good to kind of touch on the history of ARFID and PFD because there is such significant overlap.
I think you should interject wherever you want as I talk about the history, because a lot of the history of ARFID and PFD slide that you and I developed together, that is in our chapter in the Pediatric Psychogastroenterology Handbook. So a lot of it's you, because you've done so much of this work in your own research. But, you know, what we were trying to share with people was that as you look at how struggling to eat has been described in the literature, like, it first really talks about, like, it in the 40s. You know, we're kind of, like, describing that infants may struggle, that maternal deprivation is the reason for their growth faltering. I think this is where our history parallels autism so much in the sense that a lot of early autism literature descriptions are around the blaming language of refrigerator moms and other different things. So I've always. I've really tried to think about, like, what is the history of autism and how the literature has evolved over the years since then.
[00:14:32] Speaker C: Right. I mean, the maternal deprivation thing that was. That was babies and young toddlers that were in like orphan homes that had very little interaction and handling. And those poor kids, they were just given very little attention and they called it maternal deprivation. Whereas it was really just lack of attention from any person or human.
[00:15:03] Speaker B: Yeah. Like a lack of human touch too.
[00:15:06] Speaker C: Right? Lack of touch, lack of attention, lack of attachment of any kind. And so I mean, those poor kids, it wasn't just lack of mom, it was just lack of.
[00:15:17] Speaker A: Lack of love.
[00:15:18] Speaker C: Yeah.
So that, that was getting it really wrong.
[00:15:24] Speaker B: Really wrong.
[00:15:25] Speaker C: Yeah.
Anywho.
[00:15:30] Speaker B: Well, no, I think that in that kind of. You, you see that. I, I don't think that stayed in the literature that long. But then like, as you progress into kind of like the 80s, that's where you get the term infantile anorexia. And then, and then I think you get the organic, non organic failure to thrive. And I think that's a term that has stuck around for a while. I don't know if you want to talk about that at all.
[00:15:53] Speaker C: Yeah, you still see that come up in some places.
[00:16:00] Speaker B: Why do you think that's a problem?
[00:16:03] Speaker C: Because it has a lot of, a lot of blame. When people go looking for non organic failure to thrive, it has a lot of.
I mean, they're looking for the source of like deprivation. The cause. Yeah. The source of deprivation. Or you know, like what's, what's the reason to blame parents or the environment.
[00:16:32] Speaker B: Yeah.
And that's what I think. Hopefully, while now we're in a period where there is a lot of confusion around ARFID and pfd, I hope we're at least getting further and further away from blame language.
[00:16:46] Speaker C: Right.
I mean, faltering growth is a gentler way to say that kind of thing.
There's just better ways to state that kind of thing so there isn't such a perceived blame.
[00:17:05] Speaker B: Yeah. The power of words are really important, especially when you think about sharing a diagnosis or sharing a way to describe a challenge to a caregiver.
[00:17:17] Speaker C: Yeah. Especially as you're going through the testing phases and trying to figure out what's happening and what's going on. Because a lot of the time there is a negative mealtime cycle and a lot of providers and parents, I mean everyone. There's a lack of awareness as to what the best way to proceed. When there is PFD or arfid, there a huge lack of awareness as to the best things to do.
And so people can be given advice just to deliver more calories and then so they'll try harder and it can end up with forced feeding and then everyone learns that mealtime is bad situation and refusal behaviors can increase, and then it just ends up in this negative spiral, negative cycle.
[00:18:17] Speaker A: Right.
[00:18:17] Speaker B: Yeah.
[00:18:18] Speaker C: And so it can just end up in a very bad place.
And so they can end up with labels like non organic failure to thrive. It can feel very perjurative.
And so.
[00:18:34] Speaker B: Yeah, well, hopefully, as we do increase awareness, we can get away from that sort of nomenclature.
I think in looking at the literature, kind of as this timeline progresses, that's where you start seeing more and more like diagnostic attempts. You know, the literature still is, kind of describes it as many different things. You see, like people say food refusal. They do use the diagnosis dysphagia in some instances, inappropriate mealtime behavior, selective intake.
There is the diagnostic attempt of feeding problems in the icd. It doesn't have much of a definition behind it. It's just kind of like feeding problems. And then in the dsm, the manual that the psychologists used, you also see diagnostic attempts, kind of early 90s of saying feeding disorder of infancy and early childhood. So you kind of see that in the medical manual, the icd, they're describing feeding problems. And then in the psychology manual, they're describing feeding disorder of infancy and early childhood. So in that sense, I think that then became what everybody used for the next 10, you know, 20 years, but we're kind of still siloed. You still have psychologists using it, and you still have medical and physicians and maybe others that use ICD using that.
I always just put in here that Feeding Matters was there in 2006, and we started to think about this problem and, and try to make a difference in it. Yeah, so.
[00:20:06] Speaker C: So actually, I mean, Popsicle was there. Right. And then in 2011, it changed to feeding matters.
[00:20:12] Speaker B: 2013 is what the official. So it's like 2012 is when I think we officially changed it.
[00:20:19] Speaker C: But yeah, I mean, for me personally, that's the same year my son was born that has PFD that, you know, So I always think that they were born at the same time.
But I.
I always. I always think that, like, we. We get as new parents or as expecting parents, you. You buy those guides of what to expect when you're expecting. And I remember distinctly looking at mine and thinking, like, this doesn't have anything that is helpful for me.
It had nothing about what we were going through trying to feed my son. Nothing.
And at one point, I threw that book across the room because I was so mad.
And it would be helpful to have something that had even a hint of, like, this could Happen, you know, you could have problems with feeding that are very real.
But we were constantly reassured that this, this isn't a. This is all in your head or, you know, this is. This is okay. This is going to be fine. This is just a phase. It's okay to have a baby that only goes. Has a bowel movement once a week.
[00:21:37] Speaker B: Or only the biggest misconceptions, I think you just.
[00:21:42] Speaker C: You just need to try more or, you know, get a faster flow nipple or whatever. It's okay that he spills, like so much out of his.
This much. Reflux is fine. Yeah, Normal.
[00:21:58] Speaker B: Well, a lot to be done. And I think that, yeah, you know, that. I mean, back to 2006 to 2012, whenever we launched Feeding Matters, that's kind of what we wanted to be here for, was for the families, knowing that we needed to be there for the families by bringing the professionals together with the families to work on this together.
And, you know, it's funny that we switched from popsicle to feeding matters around 2012, 2013, because that's also when the DSM, so that manual for psychologists expanded feeding disorder of infancy and early childhood to a new name called avoidant Restrictive food intake disorder. So that's almost like the birth of ARFID was at that same time, too. Right.
So all of it kind of same timing A little bit, yeah.
And then I talked about how we got to the consensus conference and definition for pediatric feeding disorder that was. That was held in 2016, but published in 2019, and then the codes came out in 2021. And then I think now where we're at is, you know, we still need to raise awareness to enhance early identification. But part of that awareness raising is also helping mitigate some of the clinical and family confusion around ARFID and pfd. Yep. And so just to kind of look at the diagnostic criteria overview, you know, kind of the publication year for both 2013 versus 2019. But kind of keep in mind those years are newer, but with the history. Both of these problems have been described in different ways for years and described as the same problem for years as well.
And so then we kind of looked, you know, this, this, this framework that we're showing up on the screen. The criteria overview is a replication of a framework that Dr. Richard Noel put together and published in 2023. But essentially, he said, kind of like the originators, where ARFID was really looking at psychologists getting together. And PFD was all the different multiple disciplines involved in treating. And that included psychologists, but also included family advocates, dietitians, physicians, SLPs and OT, etc.
The format was the DSM, the psych, like the mental health handbook. But then on the PFD side, we already talked about that. The ICF really looking at the disability piece to this, the primary definition statement being very similar. And you know, we'll kind of include this attachment in anything that we share, if you're just listening to us via audio. But the definitions were pretty similar.
And then the nutritional elements are pretty similar between ARFID and pfd. They describe it slightly differently. Arfid, significant weight loss, significant nutritional deficiency, dependence on enteral feeding or oral nutritional supplements. Whereas on pfd, nutrition deficiency, significantly restricted intake of one or more nutrients, malnutrition and reliance on the oral supplements and natural feeds.
And then the behavioral and psychosocial elements. So definite interference with psychosocial functioning on the ARFID side. On the PFD side, active or passive avoidance when being fed or feeding. And then in the diagn, the definition it says inappropriate caregiver management of child's feeding and our nutrition needs. I will tell you from the feeding matter side of things, we didn't always love the term inappropriate.
So we've like used inadvertent or just, you know, like you were describing Haley, like what do you do as a parent when you're trying to get those nutrients into your child and it's really hard and so you feel pressure and you are watching them in front of you not eat and you know that they need to eat, so you try and do anything you can.
Disruption of social functioning and disruption of the relationship associated with feeding.
[00:26:04] Speaker C: Yeah.
[00:26:05] Speaker B: On the skill elements, ARFID really doesn't talk about any feeding skill challenges.
[00:26:10] Speaker C: Right. So that's a key difference between the two.
[00:26:13] Speaker B: Very, very much a key difference. PFD side does talk a lot about the feeding skill dysfunction. It really looks at what do you need to modify, whether that's texture, liquid food, feeding position, equipment, different strategies. And what does that mean for the function of feeding?
The medical elements is another differentiator. So on the ARFID side it says that it's not attributed to a concurrent medical condition. In the PFD side, it's evidenced by the two pieces of that.
And then I think what the, what PFD practitioners really think about is not just what's in the diagnostic criteria, but PFD as kind of that framework. Are there medical elements in in that's happening that's maybe causing the dysfunction in the psychosocial piece or in the skill piece.
And so we kind of talk about that a little bit when we are with Dr. Goodet. And then both pieces have not associated with food scarcity, cultural elements, and not related to disturbance of self, body image. And there's different subtypes. And so, like, really, all in all, besides that feeding skill and medical piece, they're not that different. And I think that's why it's really confusing. I don't know your perspective on that, Haley.
Yeah, it just. It is what it is. Yeah.
[00:27:45] Speaker C: I think on the surface for me, at first, there. There is the difference that, you know, one is coming from the dsm, which makes it, on the surface, a diagnosis for mental health providers.
[00:28:00] Speaker B: Yeah.
[00:28:01] Speaker C: I mean, but it can be used by medical personnel as well. But. But I mean, it comes from the DSM manual, which is meant for mental health providers.
But I. I like that PFD has the multidisciplinary origins.
[00:28:20] Speaker B: Mm.
[00:28:23] Speaker C: But, yeah, they're not that different.
[00:28:25] Speaker B: They're not that different. And I think that was, like, what. As I was looking at, what are the challenges and barriers in the system, barriers to awareness, barriers to early identification. Like, what do we need to do as an organization to make sure that children are getting identified as early as they can and that parents have the tools that they need, they're empowered to advocate, but also that they don't have to advocate as much because the medical community is ready and willing and knows what to do when they identify this.
I. You know, we realize that we need to be working on this challenge more intentionally, and luckily, we had a task force that could help us do it. So we had our research initiatives task force. And that's. Actually, a lot of things have come from that task force, but specifically right now, we'll talk about this overlap challenge. And so that task force started diving into the overlap and the confusion. And one thing I find really interesting. I don't know. You tell me your perspective on this, but I think there's almost like three different perspectives about the overlap of ARFID and pfd. There's like, the PFD perspective, which is almost how I was entering into this conversation, which is like, yeah, you know, we were trying to describe all of these problems as a holistic framework and like, that, you know, making sure that, like, we had this. This piece, and, you know, psychology is a domain, and so that's how it's described. And. And then there's the PFD psychology perspective, which is you. And Will always tells us this. Like, he felt like he had this Diagnosis in the DSM of infants and children feeding disorders for infants and children. And he feel like that got stolen and changed into avoidant restrictive food intake dis.
And then I think. And this is the part that I feel like I was almost blind to, was the eating disorder perspective. So because ARFID really grew across the lifespan, and because it was considered an eating and a feeding disorder in the dsm, a lot of eating disorder psychologists starting describing the problem as this new diagnosis and this emerging. Yeah, yeah. So I. Tell me what your thoughts on that, too, because that's the part that was like. It was like, for me, that.
[00:30:44] Speaker C: That was the new part for me as well, because I.
What. I mean, what we just went through in the history slide, we were talking about how it's. It's kind of been here all along. Right. In a setting where you have food and that. And a child either can't or, you know, for refusal reasons. Won't for, you know, because it's. It's defensive for them, won't eat the food because they've learned for some reason that it's painful or really uncomfortable.
That. That's been around, right? Yeah.
From our perspective, that. That's been around for all these years.
[00:31:25] Speaker B: Been around for years. It means in support to be, you.
[00:31:28] Speaker C: Know, but for the eating disorder perspective, they were saying, oh, we have this newly defined eating disorder. That was strange.
[00:31:38] Speaker B: Yeah. And I think because at least from the PFD side, you're not necessarily reading some of the eating disorder literature, you almost have, like, these two groups of people researching this in complete silos, one kind of describing it as a new phenomenon and one describing it as, like, you know, this is an ongoing, evolving conversation. I thought that that was really interesting. Interesting. And a huge aha. As we were diving into this.
[00:32:07] Speaker C: Well, and. And as we're talking in the research task force. Initiative task force, and we, you know, we're describing these different kinds of ARFID and these different presentations of pfd, and we're like, this one's really arfidy.
You know, like, these different things come up and like. Oh, yeah, okay. Like, we're starting to kind of describe different cases and like. All right, well, that one does sound a little bit more like an eating disorder perspective case. Like, this one's older. Like, this one maybe didn't ever have, like, the PFD that we usually think about.
Yeah, okay. Maybe this one is just ARFID on its own.
[00:32:50] Speaker B: Just arfid on its own. I know. It's a huge challenge.
[00:32:53] Speaker C: Arfid on its own.
[00:32:54] Speaker B: ARFID on its own, Yeah, I think. And I think the other piece that I. That almost makes me just reflective, I guess, is so much of ARFID seems to be. And I know that, you know, maybe research will get there seems to be the history of trauma or the history of not getting a diagnosis when you should, or not getting the intervention that you should, or going to providers that maybe aren't qualified or trying to find the right provider for your family. And that's just time lost. And it's trauma on top of trauma on top of trauma that makes that psychosocial domain exacerbated.
And for me, that was like the biggest aha. As it relates to what, you know, ARFID is, or at least I guess the PFD that turns into arfid, not the ARFID on its own. But I do think that there are a lot of the ARFID cases that if we caught them early and called it PFD originally, maybe we would have been able to lessen the psychosocial impact that they're seeing now at 8, 13, 17, et cetera.
But, you know, that's all the things that we need to work on still feeding matters. So I think that's why it makes me reflective of, like, oh, we still have so much more to do, but we're still doing a lot, I guess. So within the task force, we did identify this need. We originally published an infographic comparing the two. And then we pulled the people together to do a 2023 consensus meeting between kind of those eating disorder psychologists that are experts in ARFID and then PFD discipline. So not only just PFD psychologists, but also PFD SLPs, OTs, and physicians.
Another piece that I think sometimes gets lost as we talk about this confusion between ARFID and PFD is like, what does it mean for families? And I've been thinking about this a lot lately as I think about kind of like that awareness need and the early identification need. And I think, you know, there are families that maybe found the ARFID diagnosis and that made the most sense for them. And I really love that they finally found a name that was really hard to describe for what they were seeing in their child.
But then I also worry at what age they're finding that if they don't know that the PFD diagnosis exists, and then how does that relate to finding a provider that works for them? Like, if you're. You're kind of stuck in the PFD world, you're only going to find PFD providers.
And then similarly, if you're stuck in the ARFID world, you're only going to find ARFID providers. And so I'm really hoping that our effort can bridge the gap, I guess, between these two.
[00:35:45] Speaker C: Well, there was that family in Missouri.
[00:35:48] Speaker B: Yeah.
[00:35:48] Speaker C: That was in the news recently that had. They had. Had found the ARFID diagnosis, but not the PFD diagnosis.
[00:35:57] Speaker B: Yeah. And that I think that's. Those stories are the ones that lay heaviest on me is the ones that maybe they didn't get a skill evaluation and there is still a skill problem. I know sometimes there isn't, even if they don't get a skill evaluation. But, yeah, we did have a family that had an ARFID diagnosis, had been working on arfid, but reached out and was like, oh, we felt like we've been in a. Like on our own for four years. We didn't know this whole PFD community existed.
So those are always really hard. And that's why I'm hoping we can be there more for families, no matter what their diagnosis is. And then hopefully, over time, we can get better about what diagnosis is, which diagnosis for which child, and what does that mean for their providers.
And that's kind of like what we ended up getting to with the consensus meeting.
I know people really like this statement, Haley, but basically, you know, we can't rewrite those diagnostic criteria that overlap so much, but we can help support the clarity and the access. And so we'll share the presentation about this consensus meeting that happened in 2023. But these were the biggest pieces that came out of that, that both fields need to be talking to one another because there is significant amount of overlap.
You know, feeding skill acquisition and refinement is a longer period than most know about. But not everyone has a skill problem.
And both fields need to be researching together because you see two fields researching the same ish problem and they're both finding great things, but can they be doing more together?
[00:37:47] Speaker C: Yeah.
[00:37:49] Speaker B: So, Haley, will PFD eventually replace arfid? Is one of the questions we've gotten from the community?
[00:37:56] Speaker C: I don't think so.
[00:37:57] Speaker B: I don't think so either.
You know, it's funny because Feeding Matters is used to talking to our community who's been on this journey with us when we announced that we were hosting a consensus meeting to define pfd, and we, you know, talked about it at our conference and stuff. And so I think if you're thinking about it from A PFD perspective like I did originally, you kind of think, oh, arfid's the psychosocial domain of pfd. But then you realize it's way more complicated than that. Oh, yeah. And that there is ARFID that exists on its own. And so I don't think for sure will eventually replace ARFID.
[00:38:29] Speaker C: Well, plus, ARFID's a lifespan diagnosis and.
[00:38:32] Speaker B: Yeah, yeah.
And then the difference between the diagnoses and who can treat them is another question we often get from the community. I think we've covered a lot about, like, the differences. I think there's actually a lot of similarities, and that doesn't get enough recognition, admission.
But who can treat them? You know, really, you're looking at.
I mean, the easiest split is to think about ARFID being a mental health diagnosis with some nutrition pieces to it. So, like, a dietitian would still be able to treat ARFID for their particular pieces. And then on the PFD side, that's where you get more of that physician, slp, ot, feeding specialist side of things. But I think because of the significant overlap and the challenge in the medical community knowing both diagnoses and how they both work, I think where you find it is like someone may have an ARFA diagnosis but may need to be treated by an SLP and OT and vice versa. Someone may have a PFD diagnosis but may need access to a mental health provider.
[00:39:38] Speaker C: Right.
[00:39:39] Speaker B: I don't know your thoughts on that.
[00:39:41] Speaker C: I agree with you.
[00:39:45] Speaker B: Now, this question is one that hits really close to home for you, which is what happens when a child turns 18 and has not outgrown their PFD?
That's been one of the criticisms in calling it pediatric feeding disorder, because we know sometimes it does persist into adulthood, sometimes it persists in psychosocial domain, becomes the biggest driver of the challenges with feeding. And that is where it feels like it is a really solid ARFID diagnosis. But that's not always the case. What's your perspective on after 8?
[00:40:19] Speaker C: Well, I mean, from what I've seen happening is that they can be given.
I mean, that the ARFID diagnosis still applies, and then the diagnoses within the different domains that would apply can be used, but they probably won't be given a new diagnosis of PFD after the age of 18.
[00:40:49] Speaker B: Yeah.
[00:40:52] Speaker C: I'm not sure how it's being done in practice. Like, if they. If they have an existing diagnosis of PFD, that might stay.
I don't know that it would be removed.
[00:41:09] Speaker B: Yeah, good point.
[00:41:13] Speaker C: But I don't think that they'll be, you know, given a new diagnosis of PFD after they turn 18.
[00:41:23] Speaker B: Yep.
And then another question we get a lot is if an older child or young adult presents with ARFID but has a history of feeding problems since birth, how should that be approached?
I think that was, for me, one of the best things coming out of bringing the two fields together was how can we think differently about taking history? How can we think differently about what sort of screeners or assessments we're using, both what exists right now and what can be developed in the future.
And I think a better understanding of history and how history may impact kind of the all four domains of pfd.
[00:42:11] Speaker C: Right.
[00:42:12] Speaker B: Because you don't want to be missing something before just purely working on the ARFID side of it.
[00:42:18] Speaker C: Yeah, I mean, I would consider going back to that.
The Common.
[00:42:28] Speaker B: Report Form.
[00:42:29] Speaker C: Common Report Form.
[00:42:31] Speaker B: What did our stand for?
Yeah, so there's a. There's a publication that's called the Common report form.
[00:42:38] Speaker C: And 2022 Sharp, Sharp et al.
[00:42:42] Speaker B: Yep. 2022 Sharp et al. And it came about because actually, it'll be interesting. Maybe we have Will on to talk about it, but originally the discussion was a lot of families are filling out the same form at every single appointment and is there a way to make a more comprehensive form? And so I think it's had different iterations since that origin, but it is a really comprehensive look at all four domains and really using all four domains as a framework for really assessing out what might be drivers of the challenges with feeding.
And so we kind of answered this, but a lot of people are wondering, is it appropriate to say that PFD can lead to arfid?
[00:43:26] Speaker C: Yes.
[00:43:26] Speaker B: And I think, yeah, I think as time goes on and hopefully we can get more research that would help us answer this question better. But I have to believe that it's the trauma of a challenging journey, growing up, struggling, that leads to arfid.
It may not be the only thing leading to arfid, but I think it's a sick. It would be interesting to see how much of ARFID started as pfd.
In working with our consortium members, I think they're going to have a huge piece to help us understand how to help with the confusion that families may face in learning about the two. So I'm interested to hear from our members about the ARFID and PFD overlap from their perspective, too.
[00:44:18] Speaker C: I am, too.
[00:44:18] Speaker B: If we can be doing anything different on that end.
Future research needs, you know, we've talked about this, that they need to be talking with one another. We need more longitudinal studies. We need common measures.
Really understand the similarities and differences. Or is it the same problem and the research is just looking at it in different ages?
[00:44:39] Speaker C: This is going to be like a drumbeat after the mapping the gaps.
[00:44:43] Speaker B: Yep. Yeah, that's fair.
So, yeah, so that is our presentation on the history of.
Really, it's almost the history of PFD and then discovering the challenge and having a whole other silo being looking at the same problem. But I'm really excited the work we're doing and I think that it's what we need to be doing at this time because of how confusing it is.
Any final thoughts?
[00:45:20] Speaker C: I mean, given the history of ARFEN and pfd, what do you think the main challenges are for family centered research?
[00:45:29] Speaker B: I think I worry that in pursuing this effort of navigating the overlap that we will lose families in the process. I think as much as we can talk to clinicians about making sure you understand both diagnoses and all of that, I want to always keep it top of mind that we're talking to families in the way that they need to be talked to about this and that a family that finds ARFID also knows about PFD and vice versa. From a research perspective, I am really interested in how much of ARFID started as pfd.
What about from your perspective? What do you think is needed and what's the challenges in the research being more family centered?
[00:46:18] Speaker C: Looking at the history of it, it's not been.
[00:46:22] Speaker B: It's not been family centered. Yeah, yeah. Maybe it's just making sure families are at the table at the start.
[00:46:31] Speaker C: Yes.
[00:46:31] Speaker B: Yeah.
[00:46:32] Speaker C: My goodness. Yes.
I mean, they. Yes, they need. Yeah, exactly. They need to be at the table to start with designing studies like they need to be involved with from the. From the very beginning. They need to be brought in and allowed to brainstorm and create and you know, what, what do you think the study needs to look like? What do you want to study? How should it be done?
Like part of the.
All the blueprints of a study ground up.
[00:47:18] Speaker B: Agreed.
That's why we have the consortium. So I wonder if this will be a big piece of their meeting when they meet to think about what sort of research agenda is needed in this field.
[00:47:32] Speaker C: Yeah, I mean, priority setting for sure. But I really hope that we can have more family members involved in actual research teams.
[00:47:44] Speaker B: Yes.
[00:47:49] Speaker C: I would like to know how to accomplish that.
[00:47:53] Speaker B: I think that's a good question to continue pursuing.
We get so many in meaningful ways. Not yeah, in meaningful ways because I think we get a lot of can families participate in this research survey or research study or recruitment for families?
But we don't get a lot of we're starting to think about this study. Do you have any family volunteers that could be a part of it with us or family members in your community that could be a part of this study?
So that'll be a good pivot in the future.
All right, well, that's PFD and ARFID a historical perspective. We'll see you all later.
[00:48:31] Speaker C: Bye.
[00:48:33] Speaker D: Feeding Matters proudly announces its second annual Feed the Cause, an Arizona Signature event supporting Pediatric feeding disorder. Join us November 7th from 5:30 to 8:30pm at Papago Golf Club for an unforgettable night. We are pleased to have Catherine Anaya as our mc, a three time Emmy Award winning journalist, a former television News anchor for 25 years and currently host of Horizonte on Arizona PBS. Experience live cooking demos from chefs Roberto Centeno of Baccanera Espiritu, Don Malani of the Wild Chickpea, Julie Moreno of Jules Bakery and Katie Merwin of Sensory Cooking. Guests will enjoy the beautiful sounds of the Natalie Gulaton Jazz Trio, a cozy, chic atmosphere and the joy of making a difference. And you'll have a chance to win big in our silent auction, including treasures and experiences from all over Arizona. All funds raised at the Feed the Cause event enables Feeding Matters to expand our programs and to continue to support families and healthcare care professionals. Learn more at feedingmatters.org feedthecause that's feedingmatters.org f e e d t h e dash caust see you there.
