[00:00:00] Speaker A: Happy PST and ARFID Awareness Month presented by Feed Matters with host Jacqueline Peterson and Dr. Haley Estrom.
Feeding Does Matter.
Hello everyone and welcome to Feeding Does Matter. I'm Jacqueline Peterson, CEO of Feeding Matters and I am continuing this week. And this is actually really, you know, an exciting month for Feeding Matters because it's PFD and ARFID Awareness Month in May.
And so one of the guests that I have today is a continuation of our 20th anniversary interview series because Feeding Matters turns 20 this year. And so we wanted to bring back all the people that made this work possible. And one of those made this work really possible. He is co lead on the PFD consensus paper, developmental pediatrician Dr. Jaime Phelan. Hi, Jaime. Hi, Dr. Phelan. Sorry.
[00:01:00] Speaker B: Okay. I prefer.
[00:01:03] Speaker A: How are you doing today?
[00:01:04] Speaker B: Doing good, doing good.
[00:01:05] Speaker A: How are you doing? Well, thanks for joining us.
So in this interview series, it's been great to kind of like take a little, I've been calling it like a stroll down memory lane.
Tell me a little bit about how you even got involved with Feeding matters work.
[00:01:25] Speaker B: So back in, I think it was 2013, I published a very small article in Pediatric Review. It's a journal for pediatricians and it helps us prepare for the board exam.
One of the then members of Feeding Matters, Richard Noel, I guess, came across my paper and reached out to me and told me about Feeding Matters. And that was the beginning and it's been since then.
[00:01:50] Speaker A: That was, that was history.
And so I remember you brought a really critical voice in a lot of the discussions that we were having at the time around, just like how to even conceptualize like the feeding issues, feeding challenges, feeding problems, all of the different things, the failure to thrive of it all.
Maybe share a little bit about before kind of pre PFD diagnosis, pre PFD framework, how you as a pediatrician, developmental pediatrician, think about or thought about feeding at the time.
[00:02:24] Speaker B: So I was lucky enough at the time I was in the Air Force and I was part of a interdisciplinary feeding team. And we had different disciplines. We had speech pathology, we had a dietitian, we had a clinical psychologist.
And so I had not worked in that realm before, even in my fellowship. And I learned OJT very quickly about feeding disorders, the families, the kids. There was also a gastroenterologist on the team and I learned on the fly. And that's kind of what led to the paper that I wrote originally.
[00:03:03] Speaker A: Yeah. Tell me more about what was in the details of the paper or I mean, tell the audience a little Bit more.
[00:03:08] Speaker B: It was just a brief review though. I had looked at the time and there wasn't a whole lot written about feeding disorders. And other than our paper, there's still not a whole lot. There's a, there's a website that clinicians rely on. It's called up to Date. And if you look up feeding disorder, there's nothing there.
So even though we've published our paper back in 2019, I had mine in 2013. There's been a slew since then. I think it remains under recognized.
[00:03:36] Speaker A: Well, I remember interacting with you at the consortium meeting. Where. And when I say consortium, I don't mean the person and family centered research consortium that we have now, but we used to call the gathering of medical professional council members a consortium. And that happened at conference. And I really remember your voice in that room around A, making sure failure to thrive is called growth faltering and not failure to thrive. And I remember that being such a powerful shift and concept shift that would mean a lot to families.
And then B, I remember you really sharing a lot of the passion behind like some of the words that were out there at the time in terms of what we needed to recharacterize for the field. I think this led to the publication that we had that talked about how maybe infantile anorexia wasn't a great description for this work either. Maybe tell me a little bit about. Because we talk a lot about language on this podcast, how. Because it sounds like that's something that you're passionate about too, is really making sure that the language of how we describe tribe interventions or diagnoses really is meaningful and we're intentional about how it impacts families.
[00:04:44] Speaker B: Yeah. So I think that we're moving towards a more family centric, person centric model of medicine. So yes, as clinicians, whether we're an occupational therapist or a physician, we're still taught the medical model, which is, it's either typical or it's, it's atypical or it's dysfunctional. So we can't get away from that. But some of the terms that were used in the past were rather negative and pejorative. So the term failure to thrive, a lot of parents is like, well, I'm, why am I failing? Why is my kid not thriving? So the American Academy of Pediatrics now has formally adopted the term. They call it faltering weight. So that's the new term that they're using. It's just a reversal of the, of the words that I've been using for a while. But they recognize that this. And they actually have a new definition. So there's a true definition. So we've come a long way with that.
There's some other terms that we've used in the past. For example, intellectual disability, that's the term we use now.
In the past. There were in. These are medical terms. You can look them up. Historical, imbecile, idiot, moron, medical, mental retardation. These are all terms that were in textbooks at the time. And now we know. Yeah, there's probably a better, more functional way to say things.
[00:06:04] Speaker A: Yeah. And it shows kind of the evolution of the medical field and especially like you say, the move to be more person, patient, family centered in this work.
So I just really appreciate the perspective you brought in those rooms. As we were thinking through what is the strategy now. You were a part of the PFD Identity project, and I don't know that anyone knew that that's what it was called internally at Feeding Matters, but as the project manage on that project, that's what I would call it all the time, which was, we know that this issue needs its own identity. And so there's maybe lots of different components of that identity.
But tell me a little bit about that work or what you remember at that time of really trying to go out and make this a standalone diagnosis with its own definition, conceptual framework.
Anything that you remember as we built up to it, the meeting or afterwards.
[00:06:59] Speaker B: I think it was a learning curve for everybody involved. We had multiple disciplines.
Everybody has an ego that they bring and everyone has their own perspective.
And we've all come from our own stove pipes. And what we very quickly learned is that nobody owns pfd, nobody owns feeding disorder. It truly is interdisciplinary and you can't work in a silo, you can't work alone.
And there were some very heated discussions. You know, respectful, but there were some very heated discussions, which is necessary. You need to air your opinion, back it up with scientific evidence. But we all came together at the end and I think we produced a high quality paper and it has been cited multiple times since then. So I think we've laid the groundwork for something. Pretty impressive.
[00:07:49] Speaker A: Very impressive. Yeah, you're so right. In terms of the heated discussions, that's what we feel like we do best at Feeding Matters is like get everybody at the table.
And I think Richard's the one that said this, but he's. He's always like, no one person discipline owns feeding. And that's what makes it so challenging how. Because that a lot of that work was like you're talking your language and you're talking your diagnosis as a speech language pathologist or an occupational therapist. Here's my perspective as a physician, and here's another person's perspective as a dietitian. All of these things. And how can we build a language? And that's really what the aim was, was kind of always circling back to language. How can we have a language in which we can understand that this is a holistic system and it's dynamic and it. And we all play a part in that.
But definitely lots of heated discussions.
[00:08:39] Speaker B: But it's good. And it was fun.
[00:08:41] Speaker A: Yeah, yeah. No, it was. It was such a.
Just a huge undertaking that you all did. So for those that maybe don't know how that process worked, Jaime and then the lead author on it, Dr. Praveen Godey, they were both the co creators. Co leads. There's kind of, in the publishing world, the first and last author, and they really helped to facilitate the meeting and then the publication itself. And so the meeting, I remember there being a lot of discussion around how do we get to like the. The definition, but I feel like we almost hit the definition pretty early on in that meeting of the true definition of pfd, when a child is not eating appropriate for their age, and there's dysfunction in medical feeding skills, psychosocial, or nutrition.
But then a lot of the discussion was a little bit more around, like, the details behind the different domains and how those work and how every discipline. How do you, as a developmental pediatrician that is often the medical home for pfd, how do you approach your awareness of every domain? How do you work with families around the PFD diagnosis and the. And even the framework, if they don't have a PFD diagnosis or might not. Might have a different diagnosis. Maybe share with me a little bit about how you approach that as the medical home.
[00:09:58] Speaker B: Okay.
So I can't really say that I provide a medical home. I really think that's more owned by the family practitioners and general pediatricians, the true PCPs. But we do.
We do kind of own PFD within the world of pediatrics.
The patients I see tend to be more.
They tend to be less medically complex. Generally, the kiddos that have the gastrostomy tubes, that have the private duty nurses, the kids that have severe reflux, they tend to see our gastroenterologists. And unfortunately, I don't get to work with them. So the kids I'm seeing are generally kids that have more developmental disabilities, Autism spectrum disorder, intellectual stability, weight Faltering without the GI overlay. So there are a lot of behavioral issues involved.
My, I work for an organization that serves the underprivileged. So 60% of my patients are Medicaid.
I'd say 40% to 50% speak only Spanish. A lot of my parents are undereducated, a lot of single moms. So this is a totally different swath of parents. Sometimes it's the grandma, sometimes it's the tia de abuela that's caring for these kids. So I have to understand where they're coming from. And sometimes their best may not be my best, it may not be the standard that I want them to be at. But when you step back and realize, oh, this is a, you know, a 24 year old mom from Honduras with a sixth grade education with no transportation, I have to understand how she can best meet her kids needs. And if she's doing her best, then that's, that's okay with me. So that's kind of how we approach things here.
[00:11:42] Speaker A: Yeah. Very individualized to what the family needs.
[00:11:46] Speaker B: Yes.
[00:11:47] Speaker A: Yep. And that's I.
That's another theme that comes up on this podcast a lot, is this field needs to have kind of the standards and the best practices that we're pushing for with still having such a new and emerging field. But how can we also set that up so that it's individualized to support a family?
[00:12:04] Speaker B: Yeah.
[00:12:05] Speaker A: And what they need. Yep.
Oftentimes I think in a family coming to a developmental pediatrician, that's not something that they maybe know that they need to do when they're engaged, engaging with their pediatrician, maybe share a little bit about your specialty, how you got into it, how you kind of work in partnership in pediatrics with your family physicians or your pediatricians just to give maybe especially families a little bit more insight.
[00:12:33] Speaker B: Sure.
So the background is I graduated from ASU back in 1987, not 1887.
[00:12:41] Speaker A: No devils. Me too.
[00:12:43] Speaker B: Yeah.
[00:12:43] Speaker A: Yeah.
[00:12:47] Speaker B: So graduated and I took a couple of undergraduate psychology courses and I found them very interesting, but I didn't go to that path, but it always kind of stuck with me. So when I was a general pediatrician at Shepherd Air Force Base up in North Texas, I all of a sudden started seeing kids that weren't in my wheelhouse. And these were kids that like, I didn't even know existed.
And it so happened that the psychiatrist that had been seeing these kids was, because of resources, was no longer allowed to see dependence. So these kids actually started coming to me. My partners ran for the hills And I was like, kind of like these kids and they had stuff I had not seen or wasn't comfortable with, but quickly learned about behavioral disorders, severe disabilities, feeding issues. So that kind of pushed me to do a fellowship in developmental pediatrics.
And so there are two types of developmental pediatricians. There is neurodevelopmental pediatrics, which focuses more on neurodevelopmental issues like cerebral palsy, things like that. And then there's developmental behavioral pediatricians, which is me, which we kind of step on the toes of psychiatry, psychology, and then we do the developmental part as well.
So I did my fellowship there, came to Lackland Air Force Base, and finished my Air Force career there. And then I've stayed in San Antonio since then.
So as a development, speed, nutrition, we basically see kids that have a variety of disabilities. It could be feeding disorders.
Number one concern coming to me right now is Autism spectrum disorder, about 80% of the kids. But we also see kids with complex adhd, maybe a five year old who's failed every medication, or a child who has other things going on. We see kids with something called selective mutism, which is a child who does not have autism. And they speak freely at home and the parents often say, hey, I can't shut this kid up at home. But at school they will not talk. And so we see those kids, we see kids with hearing loss. We see kids with severe sleep disorders that, you know, I've seen kids that have gone 24 hours without sleep, kids that don't go to bed until 2 o' clock in the morning and the parents come in and they're exhausted.
Severe behavior disorders. So it's all that kind of what we do in development of pediatrics.
[00:15:07] Speaker A: Yeah. A lot of stress on the families coming into your office too. Yes, I know. Your patient is the child and that's who you're assessing and really managing. How do you do that while also supporting the whole kind of family unit in your career?
[00:15:24] Speaker B: Yeah, that's a great question. So one of the things that's drilled into your head as a pediatrician when you're going through residency is you're not just treating the child, you're treating the family. And I kind of alluded to that earlier.
So am I dealing with a mom and dad who both have bachelor's degrees and they work full time and they have a nanny and everything's hunky dory, perfect, or am I dealing with this family from Afghanistan who's never had any formal education, who doesn't know what autism is?
Am I Dealing with a mom who's isolated and maybe the child's father's incarcerated and the mom doesn't feel safe. It's any of those. So it's not just a child. We're dealing with the family. A lot of times we're dealing, we're addressing, we're interacting with teachers.
There's a lot else going on.
[00:16:19] Speaker A: Thank you, Jaime.
So kind of following that suit. That's one of the things that we try to bring into the consensus meetings and even the consensus work with PFD is that lived experience. And it's something that we've been able to do more formally in our years since the consensus meeting for pfd, even just recently, our person, Family Centered Feeding Research Consortium, called the frc, internally published their priorities on where they want to see research go for PFD and arfid. That came out in the Journal of Pediatrics.
But as lived experience has been a part of this work with us for a while, and as you've been a part of this work with us for a while, what insights do you have and how all those voices. And maybe it's even beyond just the lived experience seat at the table. But kind of when we were talking before about the different disciplines that are at the table, how did you find that consensus process worked of being able to come to consensus whenever everybody's coming at it from such a different place?
[00:17:18] Speaker B: I think the bottom line is that we're. We all advocate for children, and I think if we put our. Our egos aside and our biases aside, at the end of the day, you know, we can all sit back and, you know, have a beer together or whatever, because we.
[00:17:33] Speaker A: I believe we had margaritas after the consensus meeting.
[00:17:37] Speaker B: We have that one thing in common. It's like, okay, you say tomato, I say tomato. But the end of the day, we're. We're still seeing the same parents, the same kid. So let's figure out a way to get past us and help them. It's kind of the way I look at it.
[00:17:52] Speaker A: Yeah. No, and you all did that really well of really keeping that kind of North Star in mind.
And it's actually one of my favorite parts of what came out of the work of the consensus building for pfd, which was that focus on function and really that ICF model of thinking about, you know, it's not just like thinking about it as a disorder, but what is like the functional aspects of feeding. Maybe share a little bit about that perspective, because it sounds like that's how you support Your families in all areas, even outside of feeding as well, is like what's functional for them.
[00:18:24] Speaker B: Yeah. So. And that's actually what how I approach things because again, most of the kiddos I see aren't, are not on G tubes.
So I have kids that are, that I call them gracers. These are the kids that are heavy. They're eating throughout the day.
I have kids where the parents have tried everything, they're standing on their heads and the kids eating four foods only. So I apply what I call the kitchen open, kitchen closed approach. And it's very simple when. And a lot of these kids are, you know, they're preschoolers. So I tell parents, when your kiddo goes to school, that kitchen, that cafeteria is closed for most of the day. So your kid's not gonna be able to rummage and go grazing. So let's prepare him or her for that. So I basically call it kitchen open, kitchen closed.
So the kitchen's open three times a day. Breakfast, lunch, dinner, in between. Initially, I recommend that parents stop giving snacks. And I just tell parents, water only.
If mijo only drinks lechenido or, you know, this kid's only drinking milk. Then I say, well, let's work on that, but that needs to become water only.
The other thing we talk about is at every meal I tell parents to offer a preferred and a non preferred food.
And the reason for that is because if they only offer preferred foods, the kid will never open the book. If they only offer non preferred.
I'm sorry, if they only offer non preferred foods, a kid will never open the book. If they only offer preferred foods, they're really not going to expand the repertoire. So by seeing a non preferred food on the plate at every meal, they're more likely to tolerate them. Now I tell parents it could be 40, 50, 60 times until the child actually tolerates the presence of the green beans on the plate. But in the meantime, I tell parents, encourage the good behavior. So if the kiddo touches the green bean, they look at it, they smell it, they touch it to sniff it, anything at all. Good boy, good girl. Chocolate. High five.
Any bad behavior? Yucky. You don't like it? Spitting it out, throwing it. I tell parents you ignore it. So no lectures, no talk about children in foreign countries that don't have food. Mommy worked too hard. Daddy worked too hard. No guilt trips. And so what I try to enforce to them, explain to parents, is that any response to a behavior will reinforce the behavior.
So if it's a good behavior, and they say, hey, good job, buddy. It'll happen more. But if it's a bad behavior, a food refusal, and the parents focus on that.
[00:20:48] Speaker A: Yeah. Quote, unquote. Quote unquote.
[00:20:51] Speaker B: It'll reinforce that behavior. So those are the. The two big points I make. There's a lot more that goes into it, but it's a. It's a functional approach and I try to make it as user friendly as possible.
[00:21:02] Speaker A: Yeah, just really focusing on that because we've talked about all of the different types of families and how we need to be individualized. One of the things that I've been really struggling with as we think about how we move this field forward is some of the traditional feeding advice, especially in instances of food insecurity or like equity of.
Of what we're. What we're approaching in terms of. Because it is so common that you may need to have the exposure or you may need to see something 40 times. That's really challenging for families where maybe it's a waste or whatever. What's your perspective on that? Because I don't have great answers. I just have noticed if we're, you know, as we're trying to build this together. What does it look like?
[00:21:49] Speaker B: Yeah. So the conference that I attended, I think the last conference.
[00:21:55] Speaker A: Oh, yes. Yeah. You came out to Phoenix in February last year. Yep.
[00:21:59] Speaker B: Yeah.
[00:21:59] Speaker A: Yeah.
[00:21:59] Speaker B: I disappointed you guys by showing up. I know, but.
[00:22:01] Speaker A: No, not at all. Always great to see you.
[00:22:04] Speaker B: But one of the lectures brought up a topic that I had not considered, especially in my population, which is, you know, access to food. And so I'm giving these recommendations, but maybe the parents don't have access. So, you know, the. And my particular clinic. Not only does my organization serve the underprivileged, but my clinic, where I'm at right now, is in the worst part of town.
And so I call it a food desert. There's. Yeah, you're not going to find high quality fresh fruits, fresh vegetables. You're not going to find, you know, you know, you're not going to find a Whole Foods around here or a sprouts. And so I have to work with the families understanding that, you know, maybe their best again is not my best. And so we have. We have to keep that in mind. It's that simple.
[00:22:55] Speaker A: Yeah. Yeah. No, thank you for sharing a little bit more about that.
So after PFD came out, there was such embrace from a lot of the different communities. I think people felt like they finally had an answer for things that they were struggling with. In the past, we had previously, we had done some Surveys where people were kind of diagnosing children with whatever they could get on the paper just to make it like, seem like it was something.
But it was pfd. And so the paper came out, we were able to get the code. And you did the presentation to the CDC to get the diagnosis code for pfd. Maybe share a little bit about your memories from that process, kind of post publication. Let's get this code in the. In place.
[00:23:39] Speaker B: Yeah.
So you've worked with me long enough that I, I don't scare easily. I'm not easily intimidated. But I'm going to tell you, one of the few times that I was actually intimidated was going to that meeting
[00:23:52] Speaker A: because I'm seeing people I could imagine
[00:23:54] Speaker B: presenting codes for, you know, and it
[00:23:57] Speaker A: was Covid at the time.
[00:23:59] Speaker B: Yes. For surgery things. And I'm like, this isn't going to go. These, this, these, this is an intense setting. There was no.
I joke a lot. There was no laughter there. This was a very tense, very grueling kind of process and it was intimidating. But, you know, we were prepped, we went in there, we were well armed and it went off flawlessly and they accepted it. And now we have our own code.
[00:24:27] Speaker A: Yeah, no, it was, it was great. I watched it virtually.
I can't remember because I was going to head out there, but because of COVID I think I didn't.
Did you end up having to present virtually or were you there in person?
[00:24:38] Speaker B: I was in person.
[00:24:39] Speaker A: Yeah. Yeah. So maybe that was. It made it worse.
[00:24:41] Speaker B: Yeah.
[00:24:42] Speaker A: Yeah.
We're probably successful though, because you presented in person.
I just remember being part of the meeting being like, oh, man. We're trying to get this PFD stuff through and they're trying to figure out this like real time issue of needing to like fix codes in the moment for Covid.
[00:24:58] Speaker B: Yeah.
[00:25:00] Speaker A: Okay, so we got the code and then I've done a lot of the consensus work since of really trying to, you know, help the field think about the overall overlap and differential diagnosis or co diagnosis of PFD and ARFID and all of those other things. Where do you see the field headed and how can we think about better supporting early identification, especially as we reach out to the pediatrician and family physician population?
[00:25:23] Speaker B: So in our organization we have an electronic medical record. It's called epic. It's widely used.
And since the article was published, I began seeing our general pediatricians using the term more without me even talking to them. So I'm seeing it more widely used.
I'm also seeing arfid used as well. But I'm seeing these terms pop up as opposed to these nondescript soft terms. Feeding problems, feeding difficulties, picky eater.
[00:25:50] Speaker A: Yeah.
[00:25:52] Speaker B: Truly have issues. We're seeing it more widely. So in the future, 10, 20 years when I'm in a wheelchair, I think it'll. It's going to be kind of like where asd, Autism Spectrum Disorder is now.
People still refer to the old terms Asperger's syndrome, which we don't use anymore, autistic disorder, PDD. But 99.9% of the time we hear ASD. And I think that's the future for PFD. I think in 10, 20 years, it's going to be PFD and it's not going to be questioned and it'll be just ubiquitous.
[00:26:25] Speaker A: Yeah. No, I love that. For kind of the future of this field. I think that that was our hope in that consensus meeting. That was our hope for the diagnosis presentation.
And it is. It's so nice that there are now names for these things that people previously used undescript terms for. And that's.
And while we still have some work to go in navigating it and helping clarify and reset language and all of those things, we're at least not doing something like feeding difficulty that doesn't have a definition under it, or feeding problems or any of those.
Yeah. So small steps on a long journey.
[00:27:00] Speaker B: Yes.
[00:27:01] Speaker A: Any question I didn't ask you as we narrow in our time together.
[00:27:05] Speaker B: Yeah. What's this sign right here?
[00:27:08] Speaker A: It says San Antonio Spurs. Go Bailin. Go.
[00:27:13] Speaker B: Yeah, go.
[00:27:14] Speaker A: Jaime and I have been talking Suns and Spurs because both are in the playoffs right now. By the time this comes out, Jaime, we'll really know what happened with both of our teams.
[00:27:22] Speaker B: We will know. We will know for sure. Yes.
[00:27:25] Speaker A: Yes.
Well, thank you so much for joining me on this and for all you've done for this field inside Feeding Matters World, outside Feeding Matters World, and for your patients and families themselves. Really appreciate you.
[00:27:38] Speaker B: I appreciate you asking me. Yeah. It's an honor. Yeah.
[00:27:40] Speaker A: Wonderful. Thanks, everyone. See you next week.
Bye.
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