[00:00:00] Speaker A: Presented by female host Jacqueline Peterson and Dr. Haley. Estrogen feeding does matter.
[00:00:12] Speaker B: Hello and welcome to Feeding Does Matter, a podcast dedicated to talking about all things feeding and eating for children with pediatric feeding disorder and avoidant restrictive food intake disorder. I'm Jacqueline, CEO of Feeding Matters, and I'm here with my co host, Dr. Haley Estrom. Hi, Hayley.
[00:00:29] Speaker C: Hi, Jacqueline. How are you?
[00:00:31] Speaker B: I'm doing pretty well this morning. How are you doing today?
[00:00:35] Speaker C: I'm doing really well, thank you. So today we have the father of pediatric feeding disorder. And, Jacqueline, do you want to say.
[00:00:45] Speaker B: More about Dr. Praveen Good, father of PFD and the conceptual framework? He's a pediatric gastroenterologist. He's a colleague and longtime friend of mine. So welcome, Dr. Goodet. We're excited to have you today.
[00:00:59] Speaker A: Thank you. More than anything else, I'm really excited that I've been conferred fatherhood two days, a new fatherhood two days before Father's Day. So I think PFD owes me brunch this Sunday.
[00:01:13] Speaker B: For sure. Totally.
[00:01:14] Speaker A: But people will be listening or watching this well, after Father's Day. So welcome.
[00:01:21] Speaker B: Yeah. Thank you, Dr. Goodet. So just before you jump into what you're presenting to Haley and I today, introduce yourself, your discipline and a little bit about your background.
[00:01:33] Speaker A: I am a pediatric gastroenterologist and a nutrition expert. I have worked with children with feeding disorders for too long, more long than I would care to think about.
And many years ago, I can't remember how long ago we met in Phoenix, Arizona, group of us, various specialists that come from each of the domains of PFD to actually come up with what ultimately became the definitions paper.
And it was fun, but it was also a lot of work. And what has been really exciting since then is all the work that's happened since then, which has been even better.
[00:02:22] Speaker B: So true. So true.
Well, perfect. So we're excited to talk with you today about PFDs, specifically the medical and nutrition domains.
[00:02:31] Speaker A: Yeah, that's what I'm here for. And I think people know that PFD is common. I don't know if they know how common it is in typical kids, kids who don't have other chronic diseases. It's about one in every 30 children, which is about 3%. But when you look at children with chronic diseases, it is very, very, unfortunately, very, very common. It's 1 in 4 children. So somewhere between about 20 and 35% of children with chronic disease will have PFD. And that's why we have dedicated so much time to trying to Help all of these children who have this condition.
[00:03:18] Speaker C: And Praveen, if it's so common, how come we don't hear about it as often? Like, how come laypeople don't know about it as much?
[00:03:28] Speaker A: I think that's what we were trying to address with coming up with a name. I think when there's no name, then it's hard to know what you're dealing with. And if you look at before we came up with this name, still lots of names for this picky eating and feeding difficulties and a variety of other names. But since we've come up with this name, for example, There are about 450 citations of the original paper, which means people are using this in the medical community. It has become recognized within the medical community. I think the next step is to pass on this knowledge of the name and the disorder to the community at large.
[00:04:21] Speaker B: Yeah, that makes sense.
[00:04:23] Speaker A: So PFD consists of four different domains or four different things that can be associated with PFD and that we use to diagnose the condition. They are medical, which is typically a physician or other medical provider that deals with it. Nutrition, where we typically have dietitians that can help, feeding skills, where we have various manners of feeding therapists, typically a speech language pathologist or an occupational therapist, and the psychosocial domain, which is very important as well, and where we have psychologists and social workers, among others. This doesn't mean that these are the only people that can help children with feeding disorders, but these are the typical people that help children and families that have that have feeding disorder affecting them.
So the basic definition of pediatric feeding disorder is that it is a disturbance in oral intake of nutrients, inappropriate for age, lasting at least two weeks and associated with dysfunction in any of the four domains that I just talked about. Today I will be delving more into the medical and nutritional dysfunction and there will be future podcasts about the other kinds of dysfunction.
So what do we mean when we say a disturbance in oral intake of nutrients?
We say that when a child is not eating enough or not eating all the right things, so both of those can be a disturbance in oral intake.
And inappropriate for age means that a child is not able to do what he or she should be able to do. For example, most say 2 year olds should be able to eat most things that an adult should eat. And if two year olds are struggling to eat certain things, then that may be inappropriate for age. And we also have the definition of lasting at least two weeks because when a child has an infection, for example, the child may not eat for three or four days. And that itself will not constitute what we. What we call PFD or pediatric feeding disorder.
And when we talk about dysfunction, what we mean is things that can be observed by seeing, taking care of, or examining the child. We are, for the most part, we're not looking for things that are hard to observe. There is confusion about feeding and eating disorder. I think people within the community understand what feeding is and what eating is.
We typically talk about feeding when somebody else is feeding you. So that happens with adults feeding children. This doesn't mean that PFD cannot occur in older children. But the main difference between feeding disorder and eating disorder is the fact that eating disorders are associated with body image disturbances, especially anorexia nervosa, where even when children or adults are losing weight, they still don't believe that they are thin. This kind of thought process does not occur in children with feeding disorders.
And the other important thing to remember is that if in a particular culture, a particular type of feeding behavior is okay, and there is no other dysfunction, then that is not pfd. So if, if, for example, in native Greenlanders, they never ate fruits or vegetables, so if, if those children don't eat vegetables and that's okay, then then that's not pfd, you know, dysfunction or not.
[00:08:26] Speaker B: Eating the right foods.
[00:08:28] Speaker A: Correct? Yeah. Yeah. So that's something to keep in mind that we all. Humanity has evolved in a variety of ways, and we all eat different foods. And one does not need to eat every kind of food that every other culture eats.
It's just you have to eat what is good in your own culture. So that's what we would like, I think, restressing the fact that anorexia nervosa is different and is an eating disorder. And there. Even people who are thin don't think that they're thin. And that mental process does not exist in kids with pft.
So the other issue is there are some acute feeding disorders and they last less than three months. But most feeding disorders tend to be chronic, and they. The cutoff is three months. Occasionally we have kids who choke on something and then they don't want to eat. That estimate, especially if you deal with it quickly and take care of it, typically lasts less than three months. So there are some feeding disorders that can be acute, though most of them are chronic.
[00:09:42] Speaker B: Praveen, is the framework of having the acute versus chronic. Is that also a way to talk about, like, because it's infant feeding development and because so much is rapidly happening even in that first year of life. Is it where you might see an acute diagnosis that turns chronic or is someone automatically selecting, we know this is a chronic pfd.
[00:10:06] Speaker A: Well, so these kinds of terms don't really mean very much to the population or to our patients at large. We ultimately deal with acute and chronic pediatric feeding disorder the same. We want them to get the same kind of care.
It was almost a line in the sand that we had to draw so that we could then say, these are two different diagnoses. They're not particularly helpful in the care of the patient. And the issue is, babies may have acute pfd, but then three months goes by and they have not recovered some of them, and then they become chronic pft. So for me, the acute definition is where I know for certain if I took care of this child, then I could kind of nip it in the bud. And that's when I like to use acute pft. And for, for children where development is involved, it is hard to predict how that development is going to go. So I, I don't hedge my bets on acute and then call it chronic. I think it ends up in the chronic realm more often than not.
[00:11:19] Speaker B: Yeah, no, that makes sense. Thank you.
When the definition says inappropriate for age, I know a lot of people question like inappropriate for age or development.
And that's a huge question in any sort of disorder or framework work. Can you share a little bit about the conversation that happened in the consensus meeting room around the selection for age versus development?
[00:11:42] Speaker A: Well, even within the consensus group, we had two camps. I can't remember how big each camp was.
One camp was in the age appropriate for age, and the other was appropriate for development.
A simple reason to pick age is it is an objective measure. Right? A child is two years old, a child is, whatever years old. Developmental measures are much harder to come by. The other thing is children are not uniformly developmentally delayed. There are children who are advanced in certain aspects and less advanced in other aspects. So which part of development would you choose?
But the most important reason to pick age. We believe that the goal or the gold standard should be appropriateness for age.
Whether we have a child with, I'm going to say down syndrome because it's common and these children have developmental delays and they frequently have feeding problems. We still want that child to eat like a typical, say 2 year old or 3 year old. Right. So that's what we are setting the bar at. And if that child needs help to get there, then the child needs, needs a diagnosis to be able to qualify for help. And that's one of the reasons that we chose this, too. So these are the reasons that we picked age appropriateness over developmental appropriateness.
[00:13:27] Speaker B: Great. Thank you.
[00:13:28] Speaker A: I think it's been a good decision. There was a lot of pushback in the beginning.
[00:13:34] Speaker B: Yeah.
[00:13:34] Speaker A: But I think over time, that pushback seems to have disappeared.
[00:13:39] Speaker B: Yeah. And what's really interesting is I think it also shined a light on how much more work and research is needed in typical feeding development and what a. What a traditional feeding development milestone needs to look like as a child is growing up. So I agree. I think it was the right call as well.
[00:14:01] Speaker A: Next, talking about medical dysfunction. Medical dysfunction actually is one of the less common ways of diagnosing PFD outside very complex or children with chronic disease. Children without chronic disease generally don't tend to have medical compromise. And the two kinds of medical compromise are cardiorespiratory compromise during oral feeding. This is almost never seen outside of neonates and especially premature neonates. And these are children, when they feed, they drop their heart rates, they have trouble breathing. So that tends to stop in the nicu. We don't see it outside that.
The way that we diagnose medical dysfunction outside of the NICU and even in the NICU is by aspiration. So when food goes down the wrong tube and into the lungs, that's aspiration or recurrent aspiration, pneumonitis. So that's the only way that you can diagnose the medical dysfunction that can then be used to diagnose pft. If that makes sense.
Yeah, go ahead.
[00:15:17] Speaker C: This was a huge learning point for me, a huge key.
I had a huge aha moment in going through these slides before this podcast recording.
Thank you for that.
It was not something I learned from the paper, per se, but during this. This moment when we were going through these slides.
And I really appreciate it. It's just that it's diagnostic for medical dysfunction and pfd, those two things.
[00:15:51] Speaker A: And those of you that are not seeing the slides, you're not missing very much. So about the. Like I said, cardio.
[00:15:59] Speaker C: But it's what he's saying. It's what he's saying that it's. It's cardiorespiratory compromise during oral feeding. And that aspiration, those. Those two things happening during feeding are diagnostic for medical dysfunction for pfd. That. That was a huge thing because there's lots of other chronicle chronic medical things that can kind of contribute in. Yes, I'll let you go on. But that was a huge learning point for me, and thank you for that.
[00:16:32] Speaker A: So I think many of you listening, or at least some of you listening, will have children who have either eosinophilic esophagitis or autism spectrum disorder or cerebral palsy. And these are very common conditions that are associated with pediatric feeding disorder. These disorders in themselves are not diagnostic of pfd, and I will tell you why. There are an innumerable number of conditions. Among those, the autism, as well as EoE or eosinophilic esophagitis, cerebral palsy, they indirectly or directly cause pfd, but they cannot be used to diagnose PFD in themselves. And that's what we're trying to get at, at least within the medical dysfunction domain. Okay. So, but on the other hand, if pediatric feeding disorder, the fact that somebody is not able to swallow properly and therefore stuff is going down into the child's lungs or the child's having trouble breathing or maintaining his heart rate when he's eating, those are signs of medical dysfunction, and they can be used to diagnose PFD within the medical domain. So that's what we are trying to get at by talking about this in some detail.
[00:18:01] Speaker B: So that's in terms of the comorbidities, which we know there are a lot those comorbidities would be caught in terms of the other domains to be able to diagnose pfd, and that's why it was very specific in the diagnostics for what was dysfunction in the medical domain.
[00:18:23] Speaker A: With that, we also. We also have to remember that just because a child has one of those conditions doesn't mean the child has pfd. Right.
There are many children with EOE and with autism who still eat well enough to not need the diagnosis of pfd. So while these are associated diagnoses, there's no slam dunk that you have EOE or autism, and therefore you have pfd.
[00:18:51] Speaker B: Yep, that makes sense.
[00:18:53] Speaker A: So, moving on to the nutritional dysfunction, there are three pieces that are included in the nutritional dysfunction.
The first is malnutrition, and malnutrition is typically undernutrition.
And so there are various ways that we think about malnutrition in children. It's either a poor weight, which is typically measured as a poor weight for height, or poor weight gain, or actually weight loss. So weight loss in children is never a good thing and will almost automatically give the child a diagnosis of malnutrition.
Otherwise, a child that is gaining weight poorly or has a low weight for height in certain instances, A low height, especially if a child has been chronically malnourished for a long period of time, can also lead to a diagnosis of malnutrition. This does not mean that short people are malnourished. It also has to do with your parents. Right? If short people can come from short parents and they may not be malnourished. But when tall parents produce, have short children, one of the things we think about is the child malarched. In adults too, we look at low weight for height as measured by the BMI and significant weight loss. There are other things that we need to think about, but these are the common things that lead to diagnoses of malnutrition. And this malnutrition can then be used to diagnose pfd.
The other significant nutritional dysfunction is when a child has very restrictive intake. So the way to think about this is using the food groups. Food groups are for those of you that don't remember grains like rice and wheat, protein elements such as meat and fish and eggs, but also vegetarian proteins, typically lentils and beans, dairy, which is a milk, cheese and so on, and then veggies and fruits. Right? So each of these groups provides something to our diets. And it is very rare that a lack of grains causes trouble. And in fact, Native Americans were mostly grain free in their, you know, five centuries ago or 10 centuries ago. And they lived, they lived fine lives.
And. But other than grains, if you're missing one of these groups, then it can lead to problems. But fruits and vegetables should be considered as one group because, for example, is a tomato a fruit or a vegetable? And who knows, that's a different conversation for another day. So for a child not to eat fruits and vegetables would be a problem, not to eat dairy at all would be a problem. And not to eat proteins would also be a problem in general in the, in the modern world. If we can get many of these children to take a multivitamin, we can avoid some of these problems. But still, we want children to eat broadly and from all the food groups, if possible.
The last one is to when a child needs tube feeding, the tube feeding can be in the form of a tube that's put down the nose, a nasogastric tube or a tube that's in the belly, typically a G tube or a gastrostomy tube. But also children who need oral supplements, which are high calorie beverages to sustain nutrition. And there are many high calorie beverages, and I won't go into the product names, but these tend to be Higher calorie than milk. Many of them are based on milk, though nowadays we have beverages that are based on other. On vegetable proteins as well that are. That are available. And so when a child needs this in order to sustain nutrition status and. Or hydration, it then leads to the diagnosis of nutritional dysfunction.
So with that, I would like to conclude that pfd, as we discussed right in the beginning, is inadequate oral intake associated with dysfunction in one or more domains. And aspiration is usually the most common medical dysfunction. And nutrition dysfunction can manifest in the three different ways of malnutrition, the restricted dietary intake, and needing either oral supplements or tube feeding.
That's the gist of my presentation. And I'm sure there'll be some questions and banter. So let's go to the questions and banter.
[00:23:49] Speaker B: Well, thank you for being. Sorry, Haley, go ahead.
[00:23:52] Speaker C: Well, I was going to ask the main question that we're going to ask everyone. Are you ready for that?
[00:23:59] Speaker A: Yeah, I hope so.
[00:24:01] Speaker C: Okay. Yeah. So what are the biggest challenges you see in making pediatric feeding research more inclusive of family perspectives, and how do you think we can overcome them?
[00:24:16] Speaker A: I've given this some thought. I think we need help on the two ends. There are two ends. One is the medical or the professional side of things, and the other is the family side of things.
I think the professional side should work to understand what it is that the family wants or needs. I think this. This effort through PCORI will hopefully help illuminate some of those things on the. On the. On the medical or the professional side.
But I also think families need to understand what is really important for their children from a.
From a medical perspective. And I think there's a very happy medium there. And if this were to happen, then I think it would lead to two things. It would lead to better care of the individual child, which is what we want. Right. But it will also push research in the right direction.
[00:25:27] Speaker B: So you're almost kind of talking of a bridge to listen to each other.
[00:25:33] Speaker A: Correct. I. And. And you know, it is. I've been doing this long enough that there are happy moments when both sides can agree. Right. But there are very unhappy moments when I feel very strongly that the child needs to grow better. But the parent disagrees or. I'm not saying I'm right. I'm just saying that we disagree with. Because I feel like we are doing something wrong. And so that's where education can really play a major role.
[00:26:11] Speaker B: Yeah. I think there's such a piece there in terms of communication and understanding perspective, because you're very much looking at growth and what the consequences are without the growth, whereas a family may be thinking about other things and so much to learn. And that's, I'm so grateful that we're able to do this project where we're bringing healthcare professionals and medical professionals together with families, because I do agree that it's that education, that shared understanding that can get us some of these answers of how to work together to understand when there is a disagreement like that, what the other person is saying.
Because you're trying to. Yeah. Make sense.
[00:27:01] Speaker A: Right. But yeah.
[00:27:02] Speaker C: Was the key. The keys when it, when it is good, is it when you can all have a shared understanding and a shared goal?
[00:27:11] Speaker A: Yes.
I think the hardest parts are when the dysfunctions in the different domains are at conflict with each other in a way.
[00:27:26] Speaker C: Yeah.
[00:27:27] Speaker B: So true.
[00:27:28] Speaker A: So good point. For example, I could, I could potentially get a child appropriately fed using just purees.
[00:27:42] Speaker B: Right.
[00:27:42] Speaker A: And the parent wants more textured foods.
So that's, I'm just giving you a simpler issue.
Or for example, we could do a high calorie beverage, but the beverages on the market don't fit the parents wants and needs, things like that. So those are the conflicts. Well, there are many conflicts about whether a G tube should be placed and whether it should be removed and those kinds of things as well.
[00:28:21] Speaker B: Yeah. And I think that's what's so challenging, but also so beautiful about the way that the framework works is that you do. You are kind of forced within the framework to look holistically. But that does pose so many challenges for the domains to be at conflict with one another. And I know at this point we haven't, in future episodes we'll dive into the other domains, but it does pose a huge challenge. I can see how that's a really complicated thing from especially like the medical side.
[00:28:53] Speaker A: Right. And you know, parents don't intuitively know these four domains. Right. And.
[00:29:00] Speaker B: Oh, yeah.
[00:29:02] Speaker A: And educating them in a clinic visit about the domains doesn't help either because.
[00:29:07] Speaker B: Yeah.
[00:29:08] Speaker A: They know what they know and you try to educate them about their specific issues because those are what matter to them and try and present it in a very broad fashion.
[00:29:20] Speaker B: And it's almost too big and too much to do in one appointment.
[00:29:24] Speaker C: Well, yeah. Within a clinic visit, that's not, that's more than could be.
[00:29:29] Speaker B: Yeah.
[00:29:31] Speaker A: So I'm sure you'll find more things that the other speakers have to say and then, you know, people who are listening to the Setup podcast can kind of put it together and see what they think yeah, we would, we would welcome comments and questions and thoughts that we can address in some other forum at some other time.
[00:29:54] Speaker B: Yeah, we will make sure we get to address some, some other kind of like more audience or even consortium member questions to make sure we're addressing those. I think what you shared today was really important, especially because it's helpful to hear directly from you as you put it together. And I remember those days in working in partnership with you. But it's so interesting to see it after it happened, how the medical community takes it on and how important reading it directly from the paper is. But then to also have something like this to go alongside the paper where you can better further accept, explain that you can't do as well in a peer reviewed journal like the paper, for example, in the medical dysfunction space is a really helpful thing. So we really appreciate you being here today, Praveen with us.
[00:30:41] Speaker A: Thank you. You have to wish me every Father's Day from now on.
[00:30:44] Speaker B: Every Father's Day, we're going to say happy pfd. Happy Father of PFD World.
[00:30:49] Speaker A: Happy. Thank you.
[00:30:51] Speaker B: Thanks, Praveen.
[00:30:52] Speaker A: Okay, take care. Bye.
[00:30:55] Speaker B: 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 or type ICFQ in your search bar.
