[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 gonna get informed, get deep, get loud, and get local about pediatric feeding disorder and avoidant restrictive food intake disorder. So join us on eatingmatters on Instagram.
[00:00:30] Speaker B: Presented by Feed Matters with host Jacqueline Peterson and Dr. Haley Estrom.
Feeding does matter.
Hey, everyone. Welcome to Feeding Does Matter.
So excited this week because it's Get Loud. So this week for PFD and ARFID Awareness Month is all about getting loud and making sure that we are helping bring this information to everybody that needs it, parents and the general public alike.
So this week we have two very special guests on the podcast with Haley and I, and that is Dr. Praveen. Good day. Who is, as we dubbed when he came on the podcast before, father of PFD but pediatric gi. And then he is also the medical director of the Feeding Matters. And then we also have on Dr. Richard Noel, who is pediatric GI and has self dubbed himself the fun uncle of PFD.
And he is medical director of our PFD Alliance. And both have been a part of this work with us for years and have just been leaders in this field. And so we are so excited to welcome everybody on. So Praveen and Richard, welcome. How are you doing?
[00:01:48] Speaker C: You're doing well. Thank you.
[00:01:49] Speaker B: Nice, nice. Haley, I didn't even say hi to you. Hi, Hayley.
[00:01:52] Speaker D: Hi, Jacqueline. No, I'm just so glad everyone's here.
Richard and Praveen, is there anything new for either of you in your world, personally or professionally?
[00:02:06] Speaker E: I guess I can take that one because I am moving to Texas. Praveen can't wait to come visit.
And I will be in San Antonio as of July, so we can invite Praveen there and get him some boots.
[00:02:21] Speaker B: Yep.
[00:02:22] Speaker C: Go to a Spurs game.
[00:02:25] Speaker E: Yeah.
[00:02:25] Speaker B: First game.
[00:02:26] Speaker C: Yeah.
[00:02:26] Speaker B: Huh?
[00:02:28] Speaker C: I want to see Wendy. I want to see Wendy.
[00:02:31] Speaker E: I've seen him. He's. He's tall.
[00:02:35] Speaker C: A foot and a half taller than both you and me put together.
[00:02:39] Speaker B: Yeah.
[00:02:39] Speaker C: Yes, he is.
[00:02:40] Speaker E: Yes, he is.
[00:02:41] Speaker B: That's true.
[00:02:42] Speaker E: Yes, it is.
[00:02:45] Speaker B: Well, we have a lot to get to today and a lot of it centers around the work that you two have done as pioneers in this field.
And so, you know, because you've been in pediatric feeding and doing this work for decades, and we're critical to the consensus efforts, what do you feel like has changed in the last, like maybe Even five years.
I mean, just since things have rapidly changed in the last five to 10 years.
[00:03:15] Speaker C: Well, lots of things. I think if you go back, like 10 or 15 years, even before the consensus, it seemed like in the right places, the kids with easier problems were being treated because it was being recognized.
But then since the consensus statement has come out, a lot more people are using the same language, and it seems like we are getting better.
Not fast enough and not where we want to be, but we are getting better.
[00:03:50] Speaker B: Yeah, common language has a big piece of that. I think that was so critical about the consensus effort, was really using the same terms with the same definitions across discipline to be able to have a conversation about that.
Richard, from your perspective.
[00:04:07] Speaker E: Yeah, from my perspective, one of the things I've been amazed by is how this took off since the consensus statement, particularly in the world of skilled providers and in the world of social media.
You know, when we all started, it was a fairly small nucleus of physicians, skill providers, psychologists, dietitians.
It was a lot of the same people. But then once the consensus thing came out, I mean, it was like a. The missing puzzle piece that a lot of these skill providers were looking for, and they've just taken off with it. They've taken off with it, you know, in some ways at the academic level through organizations like Asha, which now has a big feeding contingent, but also just in the world of social media, there's at least a handful of, like, feeding podcasts. You know, it's. It's part of the conversation where it really wasn't before, because these people were, you know, this. This was the special magic sauce that was missing for them to really get out there and. And give a name to what they were doing and, you know, start to develop it a little bit more. And. And the social media thing has been interesting also because, you know, we've moved from a very small nucleus of people who are sort of the authorities, where now anybody can become an authority in a way. So, you know, there's a little bit of a vetting issue that comes up, but it's always good to have kind of more voices out there. I mean, I think it's up to us to vet them, but it's nice to get more voices, especially from the community about this topic.
[00:05:42] Speaker B: Yeah, that's so true. You kind of take the good with the bad in that regard. Like, we need people to shout from the rooftops. I mean, from the mountaintops, all of that, and get loud week. And, yeah, that's where it does get more challenging to figure out like, what is this?
What are the right ways to talk about it, or a way that's most supportive of families and all of that.
I think your perspective of it really feeling like a fit for feeding skill providers is really helpful because that's, I think what we were even seeing, too, when we were trying to dive into the codes is like, it felt like almost dysphagia was being talked about in areas where it wasn't dysphagia, but there wasn't a name for anything. And so it's just helpful to have a name.
[00:06:26] Speaker E: If I can add to that. I mean, I think, I guess you mentioned some of the places where we're still falling short. I think it, in my opinion, I think we're still falling a little bit short on the medical side, where it seems to have really taken off on the skill provider side. But on the medical side, you know, go from primary care down to some of my colleagues in the subspecialties, it's still not, you know, everybody's still in their own little silo. They haven't really popped out to see the bigger picture that the, that the multidisciplinary model kind of offers.
[00:07:00] Speaker B: Yeah, Praveen, you're. You're nodding your head. What are your, what's your perspective?
[00:07:04] Speaker C: That's absolutely true. I think, I think the, the medical providers have been behind and they don't know that they're missing it, which is a bigger problem.
Right. And so calling it a variety of names still, the old feeding difficulties and the feeding aversion kind of stuff, which is singularly unhelpful, is. Is what is still going on. We are able to make small changes around us, but these have not, These have not translated to going out into the, you know, out into the stratosphere, if you will, where everybody learns and uses the same language.
Additionally, there is the continuing confusion about ARFID and dfd, so I don't know how far we want to get into that, but that's another problem that needs to be solved.
And so people, apart from using the feeding difficulty kind of terminology, are also using the RFID terminology incorrectly.
[00:08:18] Speaker B: Yeah. And so, and we've definitely talked a lot about PFD and ARFID on this podcast in general about, like, the consensus efforts and really trying to better understand and describe it and figure out what does, you know, the compromise and what's the best diagnosis or mutual diagnosis wherever we land right now and what will land in the future on all of that stuff. But. But on the medical side, too, that's Where I think we kind of have the frustration too is we see all of the different efforts that like Feeding Matters undertakes, as well as so many other organizations that are doing their own things in either their own communities or doing presentations to other associations.
What do you feel like is really like seems to be working in that space versus where are we just kind of like spinning our wheels to try to get this out into the medical community more?
[00:09:13] Speaker C: I think pediatricians are behind in accepting or understanding or being educated about this term. I don't want to call just pediatricians out, but I think all of the pediatric subspecialists too are behind. But I think pediatricians especially so because they are the front line and they see these kids up front and so they should be. They should be diagnosing these children and getting them earlier care, which is really going to help.
But they also confront the problem of where do I send these kids when I find this problem? So that's another problem that needs to be solved.
[00:09:56] Speaker E: Yeah, I agree. And you know, from my perspective, I'm seeing a little bit of progress in the sense that, that the GI trainees I work with, they're familiar with this language because they hear me using it, they've seen presentations I've done, and they're starting to use this language and they're aware of this. And I hope as they graduate and they train more people gradually, you know, we'll kind of make a bigger inroads. But yeah, but I think, I think there definitely are many gaps in pediatric education.
I know you and I have talked about, you know, a couple of years ago, I started reading a whole lot more, a whole lot more about breast milk.
And I was just blown away by how little we are even taught about breast milk and pediatric education. I mean, most of that stuff lives in the world of food science and nutrition, but it all, you know, should belong in pediatrics also. But, you know, I never learned anything about breast milk except it had IGA in it.
But, you know, there's. There's a lot of gaps, and this is one of those gaps, because it's not just thinking about PFD is thinking kind of more globally about feeding and understanding what a speech pathologist can do for you, understanding maybe cultural differences and how they play a role getting into the food insecurity kind of stuff. All. It's all under the same umbrella.
And I think like we talked about before, everybody's in their own little kind of silo and kind of trying to get a bigger comprehensive view of feeding as A single topic, whether it's disorder or just part of health maintenance and healthy kids and primary care, it's all under the same umbrella.
[00:11:45] Speaker C: I think this is an extension of the fact that people are not taught nutrition, and this also suffers from the fact that ideally we would have a multidisciplinary approach, and it's very difficult to find the right members of a multidisciplinary team that can help a child.
So I think it suffers on both of those problems, and maybe it's one of the reasons why it's not getting as much recognition.
But I. I really feel like if PFD could be treated with. With an antibiotic, people would be like, yeah, this is what it is. We give the kid the antibiotic, it's fine, Right? Yeah.
[00:12:32] Speaker B: It's the complexity that is the challenge.
Yeah.
[00:12:36] Speaker D: What are some ways to think about this from a, you know, from a challenge? Like to print some ways to attack this challenge as an opportunity.
[00:12:50] Speaker E: I, you know, always tell our trainees that if you're trying to do something the same way and it's never working, you need to kind of try a different approach.
So I like to point out the things that they've done that have not worked and then start talking about, how can we make things work.
I think a big element, kind of bring it back full circle to how this took off with our skill providers is understanding what our skill providers do, because I think a lot of my brethren in pediatrics have really no idea of how much a speech pathologist or an OT in some places can really provide.
Because sometimes these are problems that the families are coming to us with that are not in our scope of practice. We can say, make sure you don't have disease A, B, and C, but if you don't, you just need therapy. You need a skill provider to make you better, and then having them see how things go well, when you start involving those other people, especially the skill providers, I think that's the easiest, most effective gain I have found with my pediatric trainees understanding what the skill providers do.
[00:13:59] Speaker B: That's interesting that you say that, because I think from a feeding skill provider side, they feel like they're burdened with being the medical home and really trying to navigate through the four domains of PFD to figure out and support a family through. Like, are there medical concerns? What is nutrition looking like? And all of that. And like, I think through pfd, we've really worked on what does a system lens of this look like? Do you feel like that maybe is what's missing on the medical side that we're not thinking about it like a system and we're just looking for the disease A, B and C or I don't know your perspectives. And it looks like Praveen had a thought too.
[00:14:37] Speaker C: So the issue is, I think pediatricians are very overburdened with trying to provide care. And so having them provide the medical home is, yes, it would be perfect.
[00:14:49] Speaker B: But it's not realistic.
[00:14:51] Speaker C: No, it's not realistic. That's the biggest problem, I think.
I think just as we've been talking, I'm wondering if the next step is to actually coax the AAP to write a pediatric feeding disorder paper. You know, it will take two to three years to get written, but at least if it's in pediatrics, then hopefully pediatricians are going to pay a little bit more attention to it than otherwise.
[00:15:16] Speaker B: Well, and Praveen, you also brought up a similar challenge, which is like if we work on getting loud and identifying early and doing all of these things, we already know that there's massive wait lists and it's really challenging to even get to skill providers, even community providers that are kind of carrying a lot of that, while others are trying to navigate the different levels of care.
What are some of the barriers or urgent barriers that are faced by families trying to navigate who they go see, when they go see them, and where they go see and trying to make sure that they're qualified?
[00:15:52] Speaker C: I think we all create little oasis around us. Like Richard probably has a little oasis. I have one. It's not perfect.
The waiting lists are a little bit shorter and kids who need to be seen urgently probably get seen urgently because we're able to tweak the algorithms.
The issue is there's no quick fix.
I think the fix is in trying to create more skill based folks.
I think things are moving somewhat in the right direction with more people paying attention to pediatric dysphagia and as an extension PFT within the feeding skill domain, I feel like.
So some of this will get somewhat better. But then if you don't have very many resources in the States, you know, in the upper middle of the country where there aren't as many people and as many providers, it can get really, really difficult, you know?
[00:16:56] Speaker B: Yeah. Any thoughts from your end, Richard?
[00:16:58] Speaker E: No, I agree. It's. There's definitely a bandwidth component to this.
If you just think about how much time a primary care provider spends with a patient, we're literally talking minutes.
[00:17:10] Speaker B: Yeah.
[00:17:11] Speaker E: Versus a skill provider who is spending perhaps an hour a week sometimes in the patient's own home. I mean, they become sort of an extension of the family in some ways.
And maybe that's how they end up feeling overburdened because they are so deeply ingrained with these families.
So, yeah, in some ways it may be a bandwidth issue, but even if it's a bandwidth issue, if there's just a pathway that these providers understand, if I have somebody come with this problem, this is a kind of provider or therapist that can help actually make things a ton better very quickly they start doing it over and over and over. You know, I think it's, it doesn't require a ton of time, it just requires recognizing what the issue is and having your little oasis of providers that you've worked with.
[00:18:06] Speaker B: And yeah, it's kind of finding that oasis first because that's I think to Praveen's point, like, if it's not in your oasis, you are worried about where you're sending someone. And we know on the feeding matters side, like, we've been trying to figure out what is that, what is that journey to becoming a specialized skill provider, knowing that it's, it's a broad scope with very limited training and it's a lot of self education.
[00:18:34] Speaker C: So the other thing we shouldn't forget about is we shouldn't forget about dietitians.
And the issue is we are seeing kids with very severe pfd, typically with autism, who have very, very restricted diets. And this was not happening to us in Wisconsin. We Rarely, in my 20 years there, we saw fewer than five kids with really, really bad stuff.
Now here we've seen 10 kids over the last two years with scurvy. And somebody from Florida was telling me they have 10, 10 kids over the last two years with vitamin A deficiency, some of them who have a permanent visual damage. So that's another big problem. I really think adequate staffing with dietitians will hopefully prevent or at least ameliorate some of this stuff, is what I think.
[00:19:34] Speaker B: Yeah, I think that's fair.
I know we've talked a lot about the urgent barriers, but to shift us in a positive direction, what do you feel like is like a trend that's exciting in either research or clinical practice or something that you feel like maybe our kind of North Star bright hope out there.
[00:19:58] Speaker E: I think, you know from your last Feeding Matters conference, Kofi, the speaker of food insecurity.
[00:20:04] Speaker B: Yeah, Dr. Essel.
[00:20:06] Speaker E: Yeah, that was tremendous.
And I think something like that could be a way of expanding the reach back towards like primary care and especially in Maybe in some of the more at risk communities that are at risk for food insecurity. You may also find other things there that fall right within our house, like prematurity kind of more complex PFD kind of stuff.
But that might be a big common area that I think primary care providers are more attuned to paying attention to.
It might be a way of connecting some dots.
[00:20:44] Speaker B: Yeah. How do we almost sidecar other conversations that are already happening that are in our realm?
Kind of in our realm?
[00:20:53] Speaker E: Yeah. I mean there's gonna be points where synergy can happen pretty easily and I think that might be one of those topics because it fits with a lot of other stuff that we are thinking about. Like you just. Praveen just mentioned mineral and vitamin deficiencies that falls hand in hand with food insecurity. In some ways it was nice to see that sort of under the PFD umbrella at the conference.
[00:21:21] Speaker B: It seemed to spark a lot of insight and further reflection and ongoing conversation.
Praveen, what's kind of a bright light from your perspective?
[00:21:31] Speaker C: I think we should start looking at technology and how it can serve at the interface of dysphagia and PFD and maybe, I don't know, some sort of nerve and muscle stimulation kind of stuff. Looking at. No, these things seem to work for stroke. So, you know, it's hard to do, which is why it's not been done. But first thing is we don't understand the swallow mechanism very well. And if we start from there, then we can get better.
Kids are not experiments, which makes it really hard to study them. We don't know what's normal, what's abnormal and our methods of studying them are very crude like the video swallow study.
And so I really think if he's. If we got to a better understanding of children using non invasive methods, we can help direct some of this stuff better, I think.
[00:22:35] Speaker B: Well, and reduce the impact on families. I know so many times it's like such a huge lead up to some of those swallow studies or some of the more invasive procedures.
I will say, Praveen, when you said technology I thought you were going the road of AI.
[00:22:53] Speaker C: Well, you first need lots of data before you can use AI. So let's find lots of data first.
[00:22:59] Speaker B: Yep, that's very true.
[00:23:03] Speaker D: What is something that people still misunderstand about pfd?
Is there something that you've seen like that?
[00:23:10] Speaker C: Well, I think for me it's the primary issue with PFD versus Arfid and having to explain that a million times over. But I have my thoughts and everybody has their own thoughts about what this should be.
And so that's, that's the biggest confusion. I think when I explain it to parents, they kind of get it. So I, I don't see, I don't see much difficult, you know, because every time we see a new patient, we show them the, our little four circles, you know, with the circle in the center. And so they, they seem to get it.
[00:23:43] Speaker E: I think from my end is, and understanding that there are straightforward ways of making this better. I mean it requires communication between the different disciplines and access to them.
But if you have somebody that knows kind of how to navigate, you know, and you're managing whatever disease, getting into the right therapies, with the right, you know, nutritional content and you know, behavioral support, things are going to get better.
I think it's, you know, sometimes people have a view that this is not going to get better because maybe whatever experience they came with, but you know, I'm pretty confident, optimistic that we can make almost anybody a little bit better.
[00:24:26] Speaker B: Well, and I think it's like from the family side too, you're, you do want to see all of those different people.
But with YouTube being pediatric GI, I don't know how long people wait to see you. But the often common experience that we have a families is like they fight for a long time to get recognized at their pediatrician and then they, then they have to sit on a list to be able to see a gi, knowing that they probably do need to see a gi.
And then at the same time, or maybe not the same time, they're also going to feeding therapy. And it's like, how do you help them navigate the complex and fragmented system? And especially in like rural areas, it seems like a really big challenge.
I don't know that you have a response to that. Yeah, that's what I was thinking about when you were talking.
[00:25:13] Speaker E: Definitely the rural areas thing is a big challenge. That's, that's a big one. But at least locally there are some inroads. You know, we've, we've started, we have a very small kind of feeding program at Duke. You know, it's trivially small compared to what Praveen has at Ohio State.
But the Ohio State.
[00:25:36] Speaker B: Okay, okay, only, only people from Ohio State.
[00:25:45] Speaker E: But I think making some inroads just within our center, like to the NICU follow up clinic.
I think a lot of those preemies kind of graduate at 2 years of age. They're just like out of that system. And so we've taken A lot of those in. And I think through working with them and having, you know, conversations back and forth and troubleshooting with the NICU clinic, they're a little bit aware of what we do and how things are going to go.
And the same can be said about a cerebral palsy program. There's a cerebral palsy and related disorders program that in some ways kind of mirrors what a feeding clinic might look like minus the GI piece. It tends to be more neurology, but there's a dietitian, speech pathologist, but they also have physical therapy, et cetera. But I think we've communicated. We've shared some of the dietitians that work in those same clinics. And through communicating with the other programs about what can be done with the GI piece, I think that's been a positive thing and probably has helped a few people that we haven't even seen yet.
[00:26:50] Speaker C: I think I was going to say the same thing. I think there are complex care programs in the big academic hospitals. They don't exist everywhere.
They seem to do very well, and they are kind of. Some of them provide general pediatric care to kids with complex needs.
And so that can be helpful. The issue is it's difficult enough when your child has PFD alone, but many of these children also have concomitant varieties of difficulties.
So given that, I think complex care physicians, when available, are a good way to start.
And maybe one of the things we need to think about is whether feeding matters should reach out to complex care programs.
[00:27:47] Speaker B: Yeah, there's a lot of bridge building that probably needs to happen and even coalition building as we look at what does advocacy look like? What are the moves that we need to make in that area, too?
[00:28:01] Speaker C: Right. And those doctors get it, those providers get it. You know, so that's. I think that's key as well. You want people that already kind of get it, and not that we shouldn't be educating people that don't, but this is. This is a. This is a constituency which already gets it. All the medical providers there absolutely understand feeding.
[00:28:25] Speaker D: What about for families that would have a wait time before they could see those complex care providers?
What. What do you all think families should do or maybe suggest for families to do while they're waiting in the meantime?
[00:28:42] Speaker E: I mean, it comes back to that primary care role, which is kind of hampered by bandwidth, you know, sometimes. Sometimes knowledge and interest also.
But, you know, at the very least, bandwidth is a limitation. But if those providers can start, you know, basic medications that we might work with, you know, whether it's for constipation, for acid suppression, for appetite stimulation, for, you know, whatever.
You know, make sure that they're getting appropriate referrals to therapy.
I mean, that's a great start. Make sure they're growing well and, you know, make sure that's addressed. Then usually what we have to start with is, you know, in reasonably good shape and we can just take off, figure out what is the next thing that might be needed and make a few tweaks. But, you know, in many ways, probably the first steps that Praveen and I take are things that probably could have been done a lot sooner in primary care.
I think that they're not very exotic things. They're. They're bread and butter things that just.
[00:29:53] Speaker C: Required more time, I think even before. Some of the things that Richard's talking about is, I'm thinking of safety, right? I'm thinking of two kinds of safety. One is swallow safety, and the other is nutritional safety. And while nutritional safety definitely encompasses malnutrition, I am much more worried about the kid that eats things, three foods and has a perfect BMI than a kid who is way low on the chart but is eating a lot of foods. Because we have time to take care of malnutrition. The kid with very, very restricted diets, we really have to pay close attention to the. The other is the kid that's, you know, has.
Has a wet cough every time he eats or drinks, is having trouble, has had admissions for pneumonia. Those kinds of things. Things. Those are two things that absolutely have to be addressed right up front. And it's hard to put this on parents.
Pediatricians really have to do that. And if that's taken care of, then some of the tweaks can. All the tweaks that Richard described can absolutely be done while people are waiting.
So.
[00:31:02] Speaker B: Yeah. Well, Improvin, you speaking made me think about something that you said. Said at the conference that I was reminded of this morning, actually, when I was talking to Heidi, who supports our parents. And so many of the times our families are coming to us really concerned because they're having conversations around feeding tubes and either are super concerned about getting one. And I'm worried about. Worried about that. But I remember you sharing at the conference that from the provider side, it's hard to know where family stands on that issue.
What are kind of both of your thoughts on when feeding tubes are maybe necessary and can take the pressure off and help support nutrition needs?
Any thoughts on that? Because we see families struggle with that a lot. And then once they get it, it feels like a relief.
[00:31:50] Speaker C: Right. I think, I think Richard and I know the first time we see a child that the child needs a feeding tube.
Right.
We all have metrics in our heads and we can tell parents, but I think gradually I'm coming to a point where I tell parents, if your child needs a feeding tube, nasogastric feeding, let's say, for more than six months, it's probably better to put a tube in the belly. Do I know that this number is perfect?
No. Six months and one day maybe we can get away with an NG tube. But, you know, six months seems like a pretty decent cutoff me, because the previous cutoffs were two and three months. Right. I think, I think if I absolutely knew that a child only needed a tube for two or three months, I'd happily get away with an NG tube.
I'm also coming to a point where putting an NG tube down, waiting for three, six months, unless I feel that the child is going to improve, and then putting in a G tube really doesn't make too much sense.
I feel like parents are doubly traumatized with this and then that and then the NG tube coming out. So these are the things I tell parents that these are all the ways that we can do it. We can put an NG tube down and wait and see what happens and then we can go with a G tube. But this is what I've come to understand over a period of time.
And the vast majority of parents are happy when they get. After they get the G tube because it does make them relieved.
[00:33:24] Speaker E: Okay.
Yeah. I mean, from my end, I think what I focus the most is hopefully introducing the idea before it's absolutely necessary.
I think parents never react well when you're introducing something like this and you say this needs to be done yesterday.
They don't have a way of processing that, understanding what things might be like.
But, you know, I, I think if you explain the concept early on and say, look, if, if we are at this point and, you know, after X amount of time where we could need it for fluid, for medications, for calories, you know, it's something that would make sense.
And then once the parents have that understanding, then things just kind of declare themselves and the parents understand, oh, you know, this is what Dr. Noel said to look out for. And yeah, we can probably benefit from a G tube. But yeah, I like the idea of NG tubes. But I think for me, I think the biggest thing is making sure parents are familiar with the concept long before it's absolutely necessary.
[00:34:31] Speaker C: I think that I would completely agree with that. Except that we don't always see these kids along the whole journey. We see them when it's kind of a little bit desperate. Yeah.
So that's hard. And the other thing is it seems like very many people, providers are not comfortable with the idea of bringing up G tubes. So it falls on us after a long wait to have to tell them that, which makes it more difficult.
[00:35:03] Speaker B: That's kind of back to that early identification piece and within the community and within the frontline providers.
Which also brings us back to the need for awareness and what Get Loud week is all about.
[00:35:15] Speaker D: Yeah.
[00:35:17] Speaker B: So what do you, I mean, you know, Feeding Matters has been around to really like try to bring some something to this world and to hopefully leave it a little bit better and support parents better in the process.
What do you feel like has been helpful that Feeding Matters has been able to do in helping to raise awareness and support that need for early identification? It's one of the first things in our mission is that early identification piece.
[00:35:46] Speaker C: Well, I think, I think first letting people know what the hell they're looking for. Right. Because that's the consensus statement. And having a code has also helped, not directly with regard to early identification.
You do have the questionnaire. That should help as well. And the issue is how many pediatricians know about the questionnaire and know how to deal with it. Because we want parents to take it to providers, but if there's no recognition, then it makes it a little bit difficult. So I think a lot more education, I think a lot of this would not have happened without Feeding Matters. I don't think we would have been halfway to where we are at.
We, I don't think we are good at patting ourselves on the back, but I think we have done a lot of things over time.
We always look and see, you know, it's the glass, glass half empty kind of thing.
[00:36:48] Speaker B: There's so much work to be done. It's hard to like.
[00:36:51] Speaker C: Absolutely, absolutely. And you know, at least looking at the glass as being quarter full is, is helpful. I.
[00:37:00] Speaker E: I would probably just go back to how this, you know, going back to the consensus definition was absolutely huge for multiple reasons. But again, how this took off in the world of skilled providers and in some ways they might be the ones that are pushing primary care to get these kids to where they need to be.
You know, there's a handful of times where skill providers not only are pushing primary care to send the kids to GI or a feeding program, but, you know, just to show how much they've learned is, hey, there's a great chance this kid might have eosinophilic esophagitis. And then they say, what's that? Well, send them to gi.
So I think those skill providers have been tremendous allies and they are so wedged in with some of these complex patients that they've been able to probably kind of absorb, digest, and then recommunicate a lot of that information not only to the families, but also to the primary care providers.
I think that goes back to having the consensus definition.
[00:38:07] Speaker B: Yeah. And that's so true because it's now this, like, community of support that can like, push this all forward together. We like constantly say it's not us that's doing this. It's like all of the people that are part of this work together that are like, moving this.
[00:38:19] Speaker E: Yeah.
[00:38:22] Speaker C: I think, I really think maybe Feeding Matters should focus on the medical providers. After what Richard kind of brought up and you have those aha moments and it's happening as we do this podcast.
Maybe that's the next step. Right.
I think that really makes sense to me.
[00:38:45] Speaker E: Yeah, there's definitely a lot of catching up to do on the medical provider side.
[00:38:52] Speaker B: Yeah, for sure. Because as we've tried to figure out, like, what are the things that are working in supporting education in that venue? You have your project that goes out there, you have your skill providers that show up at their door with our infant and child feeding questionnaire rack cards that say, like, do this.
We've done research projects of referrals and that kind of dwindles too. So it does seem to be this like core critical, like system wide education challenge that we need to get on top of.
[00:39:25] Speaker C: I wonder if statewide AAP meetings are something to target, you know, because the big AAP meetings are really big and people choose what to go to, which is a big problem because they don't go to things that they don't think they need to know about.
[00:39:42] Speaker B: Yeah, you're only going to the things you have an interest in, correct?
[00:39:45] Speaker C: Yes. And so I wonder if state AFP meetings are something to. Because they asked me to speak in July here in Ohio and at least you'll have one ticked off your love that your list.
Yeah, but maybe, maybe that's. It's also, it's also like something that you can put your hands around. You know, if you say you're going to target the AAP and ce, you'll never get in. And so this is the way maybe to do it.
[00:40:12] Speaker B: You all are setting up the podcast really well. Because next week we have our community council leaders who are joining us on the podcast and they will be talking about some of the things that they're doing as councils. Really, like in the Get Local. Next week is Get Local. And so in the Get Local venue. And that's so true, Praveen. I think we've been trying to approach things like grass tops and we need to do that, but we need a lot more grassroots outreach. And how can we coordinate and build infrastructure for that as well? Well, we're also pursuing maybe different ideas at the grass tops level, too.
[00:40:45] Speaker D: Grass tops? I haven't really heard that term used before.
[00:40:49] Speaker B: Well, it's kind of. I've heard someone use grass tops, but I'd love a different one. If anyone has a different way to say it. I'm always using system just because that's like the innovation system, health side, but like the Dandelions.
[00:41:00] Speaker C: Instead of the Dandelions.
[00:41:01] Speaker B: The Dandelions is where we're at.
[00:41:04] Speaker D: Love it.
And they're also just moving right into the next questions to the point where it's like, well, okay, yeah, so what are some real solutions besides the education to providers that we should be pushing for? So what are some other things you can think of, maybe in the policy realm or some tools that we should be working?
[00:41:31] Speaker C: I think we brainstormed when we were in Phoenix and we came up with trying to get screening covered.
And if we did that, I think it would be a huge step.
So if we can get feeding screening covered, sort of like hearing screening or whatever else that pediatricians have to do, that might be a big step.
[00:41:54] Speaker B: Yeah. And to kind of bring some, like more some stuff around that the. What we found when we go to pediatric offices is, I mean, they are businesses. And so if we're just saying by the goodness of your heart, can you screen for feeding? We need to provide some infrastructure to that. So if we can get a code that says, here's your reimbursement for screening, and we hope that you screen at these different times or building that into the piece as well, that might help and. Sorry, Richard, I cut you off. What's your thoughts?
[00:42:22] Speaker E: No, I was just going to say that, you know, when you think about general pediatrics, probably the two primary pillars are infectious disease and the rest is nutrition, growth and nutrition, especially in early life.
And, you know, definitely feeding can be dovetailed with growth and nutrition pretty easily, or it should be able to, where, you know, it becomes a recognized pillar that everybody screens for. Everybody's aware of, you know, whether you're talking about the medical, medically complex kids that we've been discussing or just normal health maintenance in a, you know, a well visited, otherwise healthy child.
Yeah, it's just a very important pillar and we can dovetail right into nutrition.
[00:43:09] Speaker B: Yeah, that's so true. Well, we're nearing our end time with both of you and we really appreciate you being on with us because you are recurring guests on the podcast. You have already answered our question that we ask of most guests. Yes. So I don't know, Haley, if you've got another ending question for them or how come up with it, but yeah.
[00:43:30] Speaker D: Just what would be one final thought that you'd like to leave the listeners with during PFD and ARFID awareness?
[00:43:37] Speaker E: This one's for Praveen. This has got Praveen written all over it.
[00:43:41] Speaker D: I think you could each answer, you could each give your one thought. To be fair.
[00:43:50] Speaker C: I think I'm, I'm overall optimistic that things will continue to get better overall.
I also would like to think of our former selves like 10 years ago doing this podcast. Right. And it would have been, it would have sounded very different. We've come a long way.
[00:44:13] Speaker B: That's so true.
[00:44:14] Speaker C: Although we don't want to wait 10 years. I feel like every few years we make steps in the right direction.
[00:44:22] Speaker E: Yeah, yeah, no, I completely agree with that.
You know, definitely continuing to just like eek along, making progress. I think some of the decisions we're kind of considering making more inroads into primary care, more inroads into just medical providers in general are going to continue to expand, you know, the footprint of those people who are aware of this and are interested in continuing to make it better.
Along the lines of what Praveen said about the aap. If I can get to the AAP meeting in Texas, it'll be worth about five or six. Ohio so will be.
[00:45:06] Speaker B: It's quite a big state. That's what the speech language. Much bigger association, bigger impact.
[00:45:12] Speaker C: Okay.
[00:45:13] Speaker E: So that's what I can personally work on.
[00:45:15] Speaker D: Can't screw down the gauntlet.
[00:45:17] Speaker B: That's your Get Loud commitment.
Yeah.
[00:45:21] Speaker C: Okay.
[00:45:21] Speaker B: Well, I love it.
I mean, everybody on this podcast between like Haley, Praveen and Richard, all of you have done so much work in partnership with Feeding Matters to really like build this together and, and ensure that it is, like, sustainable. And so for that I'm just really grateful and thank you, Richard and Praveen, Dr. Good day. And Dr. Noel, for sharing your wisdom and your heart with us today.
[00:45:48] Speaker E: We are, we are equally amazed by what you guys do. Because you know, going back to that, this would have never happened without advocacy.
[00:45:56] Speaker D: All right, so in 10 years, right?
[00:45:59] Speaker E: Yeah.
[00:46:01] Speaker C: Hopefully we won't have to wait.
[00:46:02] Speaker B: They have Feeding Matters. It's the mutual admiration society.
[00:46:05] Speaker E: Yeah.
[00:46:06] Speaker B: What it feels like sometimes just because it really does take all of us.
But if you are out there listening and you learned something or just felt, seen, or want to get louder with us, now is the time. So follow along on social media, join a fundraiser or share this episode with someone who needs to hear it. Because together we can create a system that works for every child, every family, every time. So thank you everybody for joining us and we'll see you next week.
Bye. 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
[email protected] that's questionnaire Feeding Matters. Org or type ICFQ in your search bar.
