What is FPIES anyway? Not your average food allergy 

 

Brianna Miluk: Hello, hello, and welcome to The Feeding Pod. This is your host. I'm Bri, Brianna Miluk, and I am a speech language pathologist and certified lactation counselor. I specialize in infant and medically complex feeding and primarily see patients in the home health setting, although I do have some that I see an outpatient or via telepractice.

I'm also an instructor at the university level and a PhD student studying communication and information sciences. I have a huge passion for evidence-based practice and supporting information literacy in speech, language, hearing, feeding, swallowing sciences, specifically as it pertains to social media and translational research.

This podcast is meant to share anything and everything related to being a pediatric feeding SLP, feeding therapist with sprinkling in a little bit about working in academia, being a Ph. D. student, and how to access, appraise, and implement research into clinical practice. Some episodes may contain guests, and I'm already looking forward to some of those coming up, while others might just be me rambling about something that's been on my mind.

Regardless, my goal with this podcast is that you walk away not just with newfound knowledge, but with the inspiration to think critically and not be afraid of research. So, without further ado, let's get into today's episode. 

Welcome back to The Feeding Pod. I am so excited because today we have Bailey DeMario with us, and she is going to be talking about her experience having a child with FPIES, and we're going to talk about what that is, what that means Bailey is also a speech language pathologist on her way, on her way, I'll let her explain that in a bit. But I'm so excited to talk about this topic because I think when we think about food allergies, we typically just go straight to like anaphylaxis, like the child who's allergic to peanuts, and we don't think about how food allergies can really present in a lot of different ways, and one of those is as FPIES.

And so, before we start and get into all of the nitty gritties of that information, Bailey, I want to pass it over to you to kind of give us an introduction, tell us who you are you know, where, where you're from, what you're doing, and then we'll go into your, your journey. 

Bailey DeMario: Yeah, well, I'm Bailey as as Bri has said. I am from Florida, but my husband and I have lived in Tacoma, Washington for about six years now, and it feels more like home than Florida ever did. So, we're very happy to be there. I decided to pursue SLP grad school because I was actually working as an ABA therapist. And I realized that all of the things in the ABA world that I was the most drawn to, like the functional communication and even working with kids on feeding and like the limited bit I got to do that.

Those were things that like were definitely more SLP focused and I could, I could serve that population better if I had the SLP education, so I kind of switched gears. I was thinking I was going to do the BCBA thing. And then like, while I was in it, I was like, wait a second, actually, no, like being an SLP would be so much better for this population.

So, I made the switch over and decided to do that. And when my daughter was about six months old, I started grad school. Which was crazy, but we made it. 

Brianna Miluk: I can imagine that was very busy. 

Bailey DeMario: Yeah, and I, you know, like, why not just go big or go home? I did an accelerated program, so I did a five-term track.

Brianna Miluk: Just all in, all in. 

Bailey DeMario: Mhmm. And it's funny because I used to always joke about like, it's not going to be that bad, like, you know, just having one baby, but... We didn't know that she was going to have FPIES, and that definitely made things a lot harder, I think, like, in retrospect, you know, obviously, hindsight's 20 20, but like, if I could go back and do a slower program, I probably would have, but we didn't know, we didn't know she was going to be sick, and then she was, and we just, you know, powered through, but yeah, so I, I just graduated with my master's back in December and while I was in grad school, I also completed my coursework to be a lactation counselor, because like through my experiences with my daughter and just like personal interest, I knew that that was a direction I really wanted to go.

I'm very interested in working with infants specifically, definitely super interested in like the feeding side of things. So yeah, I am an SLP and a CLC, not currently working as either though, because I'm also 35 weeks pregnant. So, we kind of took a little pause. 

Brianna Miluk: Might be tough to start the clinical fellowship when you're like, oh, and two weeks later, got to go. Bye. 

Bailey DeMario: Yeah. And, and honestly, like, because of how chaotic, like the entire past two years was. It's also just nice to take a little breather. 

Brianna Miluk: Absolutely. Absolutely. 

Bailey DeMario: Enjoy not doing anything for a moment.

Brianna Miluk: Yeah, I'm sure. I, I think that like, you know, you kind of bringing up the point, I know you'll talk about this more in your journey of just like, You know, when your daughter was six months old and you started graduate school, like you didn't quite know how sick she was yet, or didn't really know what exactly was going on.

And so, you know, let's kind of get into that journey a little bit now. So, if you can first start out just in general, just an overview. So, for anyone who does not know what FPIES is, what is it? What does it stand for? What's the, you know, very long name, which is why we call it FPIES, like all the ins and outs of those, of that.

Bailey DeMario: Yeah, yeah. I know. And I think that I kind of smirked when you said for anybody that doesn't know, because it often feels like nobody really knows what FPIES is. It was, it was it was, it was definitely a process, but we'll get into that later. But yes, first talking about just FPIES as a whole. I'm obviously just going to preface this by saying like, I know a lot about food allergies because like pretty much all FPIES parents, I kind of became an unintended expert in this little area of the world, but like, by no means am I a medical professional, so, you know, I will, I will give my overview, but if you want more detailed information, it's, it's available probably in better ways than I can describe it, but this is like the, the parent description of FPIES and food allergies.

So FPIES, like, like Bri said, it's, it's a mouthful and that's why we have a nice cute name for it is food protein induced enterocolitis syndrome. So, if you just kind of like break that down, food protein induced, obviously that kind of refers to the fact that it's a, it's a food allergy and it's an immune response to the food proteins that somebody is ingesting.

But I feel like before you can really understand FPIES, you kind of have to like take a step back and think about food allergies as a whole. And a lot of people, when you think of food allergies, I think like you mentioned earlier, you think of like anaphylaxis, you know, and people don't realize or not, I guess not realize don't know.

Like, I don't know why they would know that there are two different kinds of food allergy. So, there are IgE mediated food allergies. And that's what you're thinking of when you think of like anaphylaxis type of response. And there are non IgE mediated food allergies. So, with IgE mediated food allergies, all that means is that the immune response is happening because of the IgE antibody.

In non IgE, that antibody doesn't have a role in the, in the reaction at all. So, they're kind of a little bit different because the presentation can be pretty different, but it is still a food allergy because it is still an immune system response. It's just happening in a different mechanism than a typical IgE allergy would, and it's frustrating as a parent with a kid that has non IgE allergies because you often hear people saying, well, at least I don't have a real allergy. And they do. 

Brianna Miluk: This is very real. 

Bailey DeMario: Uh-huh. Yeah. So, I think that like, my first, I'm sure I'll, I'm sure I'll throw out a little professional advice all throughout this conversation, but. 

Brianna Miluk: Please, please do, please do. 

Bailey DeMario: Don't say that don't don't minimize people's experiences because it is, it is just as much a food allergy as an IgE allergy.

It's just a different kind and has a different presentation, but the, the widespread effects on somebody's life are still very much present. And in a lot of ways, it's a lot more challenging because FPIES is a type of non IgE food allergy. There are other ones as well with non IgE allergies. There's no tests for them.

So, you have no idea what your kid is even allergic to. You can't just go get blood work and be like, Oh, look, it's peanuts. Like every single food has to be systematically trialed so that you can figure out what it is that they're reacting to and that's another interesting thing about F pies. The, the, the common trigger foods are so strange.

Brianna Miluk: They are not at all what you expect. I think the one that really sticks out in my mind a lot is rice. Being a super common trigger with FPIES. And there's others. And there's also like, I know you'll talk about this, but like individual ones per child too. Like. 

Bailey DeMario: Yeah, when we first started learning about it, I was like, it's just so strange because so many things that are super common FPIES triggers are also very common first foods because they're like thought of as like not being allergy foods like avocado is a really common trigger, bananas, chicken, peas, like all of these different things, sweet potatoes. So, it like, it, it's a little bit harder to navigate because a lot of the foods that are recommended for you to give to your kid, like if your kid has FPIES, you, they shouldn't be eating those things

Or at least, at least not yet. You know? So, but the, it can be, yeah, it can be like, a whirlwind to try to wrap your mind around how different it is from one of those like more traditional IgE allergies, because there's so much that they don't have in common. And then the other thing about FPIES and IgE or non IgE allergies in general, is that they often have a not often they always have a delayed reaction.

So, they can be hard to figure out from that standpoint too, because there are different, there are two different kinds of FPIES reaction. You can have an acute reaction or chronic reaction, but either way, generally speaking, like the minimum amount of time for an acute reaction is about two hours after ingestion.

So, you're not going to see any kind of reaction for an entire two hours. And in chronic reactions, it can be up to like two days before symptoms start to present, so it can be really challenging to even connect the dots and realize that it is a food allergy because, you know, you gave your baby avocado and they didn't have a reaction until four hours later.

So, you're just thinking it's something completely unrelated and the medical professionals that you're going to ask for help who don't know what FPIES is think they have a stomach bug and that, you know, like. It's just, it's a really tricky thing. A lot of families go through a really challenging diagnosis process because they just keep getting told that their kid has a stomach bug and that's not the case, but it's like, you know, when, when it's not super linear, it's not like a kid that has an IgE allergy and eats peanuts and then swells up and goes into anaphylaxis. It's like, well, over the past 24 hours, my kid ate this and this and this and this and this, and maybe, maybe the chicken was bad. I don't, you know, like it's, it's just, it's a very different thing to try to figure out. 

Brianna Miluk: Absolutely, yeah, I would love to, you know, kind of because I agree and when I've seen children with FPIES in my practice, it is something that typically takes a while for that diagnosis to come about because sometimes it's thought like it's really bad reflux or it's GERD or sometimes it's You know, the, the stomach bugs, like, well, does your child also go to daycare?

They're probably just catching something and then that's happening. And it can take a while because of the fact that like, you can't just do a blood test or a skin prick test and it's going to show up. It doesn't work that way. So, I would love to know, like. Let's talk a little bit more about diagnosis, and I know you are going to be sharing from, from your experience and your journey but I would love to know, like, you know, what were some of the first signs or symptoms you saw, and, and who were the people that you, you know, talked to, and, like, who became part of your child's medical team in order to get the diagnosis?

Bailey DeMario: Yeah. Yeah. And we, we had kind of a I think all, all FPIES experiences are pretty unique because it's, they all, all of these kiddos have such different triggers and such different response, like patterns and things, but our situation in particular was definitely not as typical as what you what you might see in a kid with FPIES.

A lot of times they might be having some like nondescript symptoms related to breastfeeding or formula feeding. But oftentimes they don't have those like big acute reactions that require medical intervention until they start solids for the first time. That's a pretty common pattern, you know, like the kid eats the avocado and they're six months old.

And then they end up in the hospital because they go into hypothermic shock from vomiting so much. But that's not actually what happened with us. Claire, my daughter, she, she, she was sick like from, from the get-go. And we didn't, we didn't know at first because we were first time parents and it's funny because I've spent a lot of time taking care of babies and you know, like all through high school and college, I was nannying and things like that.

But I always, I always helped like, like worked with formula fed babies. So, I mean, I guess you kind of have to get gross when you're talking about FPIES a GI mediated problem. So. 

Brianna Miluk: Yeah, we're just going to get into, we're just getting into it. Content warning. We're talking about vomiting. 

Bailey DeMario: And poop. Like poop is a big thing. 

Brianna Miluk: And a lot of poop.

Bailey DeMario: It's kind of yucky. 

Brianna Miluk: Yeah, yeah. 

Bailey DeMario: But we didn't realize how abnormal her, her poop was. We didn't, like, we had no idea because we had nothing to compare it to. Like, we had no frame of reference for what it should look like and so early, like looking back, like again, hindsight's 20 20. Looking back, it was not normal from like day three, you know, once she had passed all the meconium and like started having actual stools, nothing was what it should have been, but we didn't know until we did know because it started getting much, much worse.

So, by the time she was about six weeks old, I want to say she was like six weeks old is the first time we saw blood in her stool. And then we were like, okay, like, here's, here's your sign. And she had already been having a lot of other symptoms prior to that as well. She was, she, she threw up all the time.

And I, I don't like to say spit up because it was not spit up. I mean, she would like projectile vomit. I kind of like jokingly referred to her as the exorcist baby because it would shoot out of her face. 

Brianna Miluk: I think that's so important to note though, because like there is a range of reflux being normal in infants.

There is a significant difference in the infant who is projectile vomiting, like it's not, oh, a little burp of reflux and it comes out. And even sometimes those can look like a lot, but there is a difference in vomiting, like a projectile. And, but again, if you do not know, you know, you're not aware that there's some of that variation. It can be hard to identify. So, I'm glad you bring that up because, you know, it can be also something that's dismissed if you're not very clear about what you mean, like, no, my child is not reflexing my child is. And I've heard other parents say the same thing, like, exorcism style vomiting like it's aggressive.

Bailey DeMario: Yeah, like, shooting, like, over a foot out of her face. 

Brianna Miluk: Yeah. 

Bailey DeMario: That's not normal in any context. If that's happening to your baby, like, go get them checked out. 

Brianna Miluk: Right. 

Bailey DeMario: And don't listen to medical providers that tell you, oh yeah, all babies spit up, like. And it's interesting because I actually, I'm, I'm gonna, I'm going to reflect back on a podcast you did with somebody else a while back, but it just, it stuck with me. It really did. Dr. Taylor Arnold. I love her. 

Brianna Miluk: I love her. If y'all don't follow her, she's Growing Intuitive Eaters on Instagram. She's yeah. She's amazing. 

Bailey DeMario: She's awesome. But one thing that she mentioned was like, when you're talking to medical professionals about anything going on with your child, like, make sure that you are quantifying the descriptions and that's so true, you know, you can say my baby throws up a lot and that means something very different from my baby every time I breastfeed two hours later, she has projectile vomit coming a foot out of her face like those are two very different descriptions and in a lot of ways I think that I mean, I'm a, I'm a, I'm a very adamant person about advocating for healthcare needs because I have a history of my own problems that went unaddressed for a long time. So, I kind of am thankful that I already had that background and definitely wasn't going to take no for an answer when we were trying to find answers for Claire.

But a lot of parents, like, And I don't, I don't fault the parents for this at all, but a lot of parents don't know how to effectively advocate for their kids in the medical setting. And, you know, you see, you see physicians as an authority figure and you trust them, like, that's what they're there for, they're there to guide you.

So, if they're telling you not to worry about something or that something's normal and, and inadvertently dismissing your very valid concerns, it can be, it can be like this tricky thing where you end up going way, way longer without having those problems effectively addressed. And I'm, you know, I, that wasn't the case for us.

But part of it was because I was just like, no, like, I'm not crazy. This is, this is real. This is happening. But we did have, we did have those like very dismissive experiences with multiple different medical providers by the time she was eight weeks old. We knew something was wrong. Like I said, at six weeks, I think we saw blood for the first time.

She, which like, this is not a normal pattern of going like of pooping for babies either, but I didn't know at the time, but Claire would breastfeed and then she would have diarrhea and she would breastfeed and she would, she was, she, she would probably, I want to say like 10 to 12 times a day, she was pooping.

Brianna Miluk: Wow, that's a lot, but also if you didn't know that. 

Bailey DeMario: Yeah. 

Brianna Miluk: Totally think like. Well, all she's doing is taking in liquid. So of course, it's going to be just like super liquidy and it goes through very quickly. Cause like, you know, we do think about like breast milk can be digested very easily. So, like, that's totally valid that you would not know otherwise.

And also, side note for feeding therapists, this is exactly why we ask about poop. And we don't just say, how is your child's poop? We say like, describe it to me. How often do they go? Like, If they have constipation, sometimes. Define sometimes. If they have diarrhea, sometimes. Define sometimes. Like, we have to go into that, going back to what Dr. Arnold mentioned, like, that quantitative piece. Like, how do you define sometimes? How do you define throwing up? How do you define spitting up? How do you, you know, and like, actually getting that detailed information from the caregivers? So. 

Bailey DeMario: Yeah, well, it's, it's funny because like, even as a parent, you know, obviously now that I've gone through my lactation coursework and all of that stuff and just like had more experience being a breastfeeding parent, you know, there's a lot that I know now that I didn't know then, but I remember early on when you're, when you're learning about like breastfeeding in particular and what that's going to look like as far as like diapers to expect and things like that, everything talks about the minimums, but nothing talks about what's like too much. So, we didn't know. 

Brianna Miluk: Yeah. Also, a really good point though cause we do often be like, well, are they at least doing this amount? And it's like, okay, good. You know, but like going that many times a day could also not be. 

Bailey DeMario: Yeah. Yeah. And like, we didn't know that her poop looked way different than it should have, you know, it was just like pure mucus, but we didn't know.

And it was not the beautiful buttery yellow color that you want it to be at all. You know, again, it has like you, you look at these like reference charts and they have like a kind of like range of normal. And it's like, I mean, yeah, it looks kind of like the colors kind of right. But then if you're not like taking into account, like quantity or, or texture or things like that.

Yeah. We just, we just, but by the time she was two months old, we definitely knew that like things were not right. Cause by that point I had like looked into it a lot more and I'm like, okay, wait, actually her poop is like super wacky. She should not be going this much. She should not be vomiting like this.

So, we went and finally got an appointment with an allergist. We'd already talked to our pediatrician about these concerns because Claire was also losing weight, which is like, that's not great. You know, we don't want that. 

Brianna Miluk: We don't want any, any weight loss at this point in time. For sure. 

Bailey DeMario: Like when she was born, I think she was in like the 60th or 70th percentile for her weight, pretty normal. You know, she wasn't a huge baby. She wasn't a small baby. She was like very average. And by the time she was two months old, she had dropped down to being in like the fifth percentile. 

Brianna Miluk: Wow. So big percentile drop. 

Bailey DeMario: Yeah. And I'm like, I, I always remind parents, like weight percentiles are not everything, but you like your child following their own curve matters.

Brianna Miluk: Yeah. So like if a child's born at the 60th and maybe they, they hang out, they drop a little right after birth, they go to the 50th, but then they hang at the 50th or if the child's born at the fifth percentile but then they're, you know, the child who's born at the fifth percentile and then they follow the fifth percentile, but it's when we see those percentile drops especially significant drop that it raises a concern.

Bailey DeMario: But we had already talked to the pediatrician and you know, talked about everything that was going on and like, yeah, she mentioned reflux as probably a culprit.

And I, by that point, I was already pretty certain that food allergies were at play too. I had a friend whose son had IgE mediated allergies to a few different things. So, I talked to her a little bit, Claire's symptoms weren't quite the same as his, but there were some commonalities and I was definitely already starting to question food.

And I think when she was about eight weeks old is when I started cutting things from my diet to see if it would make a difference. So, I cut milk and hmm. Oh, it's been a long time now. I don't know. I got like three things all at once, like the common allergens. I think it might've been milk and eggs and peanuts or maybe soy. I don't know. But either way, I cut a few things for my diet at like around eight weeks and we had her allergist appointment because I finally demanded to the pediatrician, I was like, wait, we want to go see an allergist. Cause they kept saying, Oh, she's too young. Like it's like, she's too young to have food allergies, which is another thing like wrong. 

Brianna Miluk: Huge misconception that there is a specific age you have to be to have a food allergy or to even see an allergist. No. 

Bailey DeMario: Yeah. Yeah. 

Brianna Miluk: You immediately go. 

Bailey DeMario: So finally, I think when Claire was about 10 weeks old, we had her allergist appointment and he was probably the most dismissive and rude medical professional I've ever encountered in my life. And essentially, and this was like still during COVID times, you know, she was born in 2020.

So, I, my husband couldn't come with me. It was just me and Claire in the room. And I think that definitely had a role as well, just like being a woman instead of like, if my husband had taken her, I really wonder how that would have looked, but that's like a different soapbox that I'm not going to get onto too much, but he was extremely dismissive and essentially was saying that I'm, I was just being a like stressed out mom, you know, like mom's worry. You guys always worry about everything. If you really want, we could do the skin prick testing, but it doesn't seem necessary. And I was like. 

Brianna Miluk: Making you feel bad for wanting an answer. 

Bailey DeMario: Yeah. 

Brianna Miluk: You're like my child's not growing.

Bailey DeMario: Right. 

Brianna Miluk: I just, I honestly, I have to say, I just got to stop you there because I truly thought you were going to say they finally started asking questions. That's, you know, led you to. I'm so disappointed for you. I wish I could hug you through the screen. Like, that's where I thought my, I thought, that's where I thought it was going to go. And so now. 

Bailey DeMario: It gets better. You're going to, you're going to like, yeah. So, they did the skin prick testing and obviously it was all negative because Claire doesn't have IgE food allergies. And in our follow up appointment with the allergist, he said, word for word, If you're worried about the blood in her stool, you could see a GI doctor.

Brianna Miluk: Is blood in stool ever normal, anyone?

Bailey DeMario: Like, should I not be worried about it? 

Brianna Miluk: No, like, I'm sorry, so she is bleeding in her GI tract, but we're just gonna... 

Bailey DeMario: And not gaining weight and throwing up all the time and constantly having diarrhea and screaming nonstop. 

Brianna Miluk: Right. And we're just gonna... 

Bailey DeMario: It's fine. If you're worried about it.

Brianna Miluk: Yeah. 

Bailey DeMario: I was like, well, yeah, I am worried. 

Brianna Miluk: Well, I am worried, so thank you very much. Let's gaslight mom into thinking all of these problems are fake. 

Bailey DeMario: Yeah. Yeah, so that was cool. 

Brianna Miluk: Oh, I'm so sorry. 

Bailey DeMario: And he also told me to put all of the things that I'd eliminated from my diet back into my diet. He was like, it's not food allergies, you can just eat all of those things again. Which I didn't do. 

Brianna Miluk: Yeah. 

Bailey DeMario: By this point I was just like, okay, we're clearly in this alone. 

Brianna Miluk: Oh my goodness. I, I think, like, what's so frustrating, like, As a provider, because like, obviously I don't have a child with FPIES. I haven't had this experience like intimately close to me, aside from patients is like, this story resonates with so many families.

I guarantee this is going to resonate with so many families and that shouldn't be the case. Like the allergist should be able to say, Hey, you know, like we did the skin prick test. It didn't come back. Doesn't mean it's not what's going on. Or to even just ask the questions. Actually, I just read a book for a CLC course actually for, for updating my, my continuing ed and the book was called every patient tells a story.

And it talks about the importance of listening to your patient's story and how just listening to the history and the case history and what they report can tell, can like diagnose 90% of what it is we're finding. And the tests that we do is just to validate it. And I feel like this is one of those perfect examples because it doesn't always show up on a test.

So, we might use some tests to like confirm, but we need to listen to the history because if you listen to your story, it leads you in that direction, but nobody was asking the questions. Nobody was, was seeking that history. It's so frustrating. 

Bailey DeMario: Yeah. It's funny that you say that because like FPIES, like a lot of different illnesses, the diagnosis is made purely on case history because there is no definitive test.

I mean, you couldn't, you could look at like certain lab tests and there are certain things that can be wonky, but nobody's going to order those tests without even knowing it's FPIES in the first place, you know, but it's one of, it's like one of those diagnoses that is made purely based on clinical presentation.

And if you're not listening to what the clinical presentation is, and you just have this like checklist in your brain of. Well, it's not these things. So clearly mom's just crazy. You know, it's like you're, you're never going to get anywhere. And the thing that frustrated me the most, once we finally got her diagnosis was like looking back on the interactions we had with that first allergist. Why wasn't he familiar with FPIES? Like, he's an allergist. 

Brianna Miluk: Right. It's like asking any of the questions. To even like, again, just investigate the history more. 

Bailey DeMario: Yeah. 

Brianna Miluk: When you finally got your diagnosis, who did you see? Who helped you with it? 

Bailey DeMario: Yeah, so... If we fast forward a little bit which again, like I said, I think that our situation was very unique because like a Claire was very sick from very early on, but we also got our diagnosis much earlier than a lot of families.

She hadn't started solid foods yet. Which is like wildly abnormal for FPIES. That doesn't typically happen. And I just want to emphasize that like, what happened with Claire is not as, as typical of a presentation of FPIES as a lot of people face. 

Brianna Miluk: So, I think You know, some of the things you saw like the diarrhea and the projectile vomiting those signs and symptoms will still present just typically doesn't happen in infancy right away.

Bailey DeMario: And like when they're exclusively breastfeeding. 

Brianna Miluk: Right. Yeah, yeah. 

Bailey DeMario: Yeah, which and it's funny because there's there's research out there because I'm a very research minded person. I like reading research, which I think there's not a lot of people like us, Bri. 

Brianna Miluk: Yeah. I'm like me too. 

Bailey DeMario: I really enjoy it. And I like, I'm, I'm thankful that I have the capacity to like take research articles and read them and actually like really synthesize them and understand what they're saying. And so, I've probably read like every publication on FPIES in the past 10 years, you know.

Brianna Miluk: You're me as a future parent, reading every article possible. 

Bailey DeMario: But it's helped a lot, but there's like, there's, there's, there's indications like in the literature that like FPIES reactions in the exclusively breastfed infant are not common But they happen. They are a thing that can occur, you know, but if you haven't read, if you're not up to date on that specific research and maybe, and maybe that allergist, maybe all of his clinical experience was kids that are six months old and starting solids and have their reaction to rice cereal or to their avocado, or, you know, and we just didn't fit in his box of what FPIES should look like.

So, he didn't even consider it. I don't know. I can't like, I can't speak for him. I can speculate on like, maybe that's what happened, but. Claire kept getting sicker, obviously, I kept cutting things out of my diet, trying to figure out what it was, and we, you know, we're back at the pediatrician, and I distinctly remember this, the going to the pediatrician this time, and I took in one of her diapers that was full of blood, visibly full of blood, you know, like you could see it, but I wanted it in her medical chart.

That this was happening and I wanted them to test it, even though you could visibly see it. I wanted them to do the test right there and put in her chart that this was happening, you know, like I wanted, I wanted that to be there. And by that point, like I was angry. 

Brianna Miluk: Yeah, you're like, you need to actually look at this. And now tell me what's going on.

Bailey DeMario: Yeah, and so I finally went in and Claire was about, I think by this point she was probably three months old and they did the test, which obviously was positive for blood in her stool. Like you could see it, you know, but they did the test, put it in her chart and I looked at it. I was talking to the pediatrician and I was like, where do we go next that someone's actually going to help us?

Because so far. All anybody's told us is to put on hypoallergenic formula, and I've very, very strongly advocated for the fact that I want to continue breastfeeding for a multitude of reasons, especially because her GI system is so fragile and damaged right now. Like, I want to continue breastfeeding. Who can we talk to that's actually gonna help us do that and figure out what's wrong with her?

Like, you know, and she said, I'm going to be completely honest with you. If you go to the GI doctor that's in our like hospital network, he's probably going to say the same things that we've been saying that I've been saying that the allergist has been saying they're probably just going to tell you to try a hypoallergenic formula.

She was like, but there's this other provider. There's a GI provider like down South a little bit. And he has a naturopath on his team and a dietitian, and they're an extremely pro breastfeeding clinic, like they really like supporting breastfed babies and like, like nurturing that relationship. So that's probably your best bet.

So, we go down there. We get an appointment with him. And we described everything that's happened with Claire and probably like, I don't know, six or seven minutes, just like talking about like, this is, this has been her life up until today. And he was like, yeah, she has FPIES. 

Brianna Miluk: He just immediately was like, that sounds exactly. Yeah. He listened. He listened. 

Bailey DeMario: And he, and he knew. 

Brianna Miluk: Yeah.

Bailey DeMario: And then that was like, when it was so, cause then got like it down the line, going back to the pediatrician, the pediatrician had never even heard of FPIES. Like that's, and that's like kind of speaks to like how, how rare it is as a condition and how like poorly informed your providers might be about something like this when you're dealing with like a rare food allergy or any other kind of rare disease.

It can be so like painstaking to get that diagnosis because the people don't even know it exists. So how can it be on their radar, you know, which it should have been on the allergist' radar I'm going to stand by that but my pediatrician like I give her a little bit of grace. But yeah, so he was just like, yeah, she has FPIES and then he, he talked about in a little bit more detail.

He was like, technically like at this age, which I'm not going to get too much into the differences between these, but there's something called it's like FPIES, but it's food protein induced allergic proctocolitis, which is a different thing. And he was like, technically at her age, because she hasn't started solids like most people would probably diagnose her with that. But I would, I would like stake my money on the fact that she's going to have, you know, so he went in and diagnosed her with FPIES and she had never consumed food other than breast milk. So that's why that was like a definitely unusual compared to how a lot of people go about the diagnosis.

But lo and behold, like when she started solids, she definitely had FPIES. So, we got to and his, his first, his very first recommendation was to cut the entire top nine allergens. So, I was like, okay, sure. Let's do it. 

Brianna Miluk: So, you're like, I am now going to be eating four types of food. Like feels, I'm sure it felt so restricting.

Bailey DeMario: It did. And it got so much more restricting, like as, as time went on, because we just. Like I was working with a dietitian that, that was who I primarily followed up with. Cause once, once you have the diagnosis, there's not too much doctors can really do for you as far as FPIES goes, it's kind of just like, good luck, figure it out.

Like, you know, like they can't really help that much, but I was working with a dietitian and she was kind of helping me navigate the elimination process. And, you know, I cut the entire top nine and Claire was still having symptoms and some of her symptoms even started getting worse. And by the time she was like six months old, I think she was down to below 1% for weight.

Brianna Miluk: I mean, honestly, it's shocking. And I don't know, maybe that's where you're going to go with your story. I don't know all of it. It's, it's shocking that nobody had tried to push for a feeding tube at this point with, with how much her weight had dropped. However... It's kind of one of those things where like, okay, if you did the feeding tube, like it's still going to be taking in the same thing, you know, she would still be kind of taking in the same thing. So, it gets tricky for sure. 

Bailey DeMario: Yeah. And the GI doctor was the first one that had brought up the possibility of doing like supplemental nutrition. And that was like, it was in our plan. Like if we couldn't figure out how to get her weight up on a certain timeline, we were going to start like looking into that. But he was also very wary of that because we didn't know what her triggers were yet. And there's. 

Brianna Miluk: Yeah, that's what I was thinking like, even if you started something, it's like. 

Bailey DeMario: She could just be getting sicker. 

Brianna Miluk: Right. Yeah. 

Bailey DeMario: And it's funny. He kind of chuckled at everyone that had recommended hypoallergenic formula because he was like, based on her symptoms, she probably would have reacted to all of the hypoallergenic formulas. And then she would have definitely ended up like on, on a tube, but like inevitably, because. 

Brianna Miluk: Yeah. Because they're based on other You know, there's other ingredients in them to make up for like not having dairy or not having soy that FPIES can have a reaction to. 

Bailey DeMario: That's why, that's why with Claire, that's why it took us so long to figure out what was going on with her because we were like working through all of the common things.

But, and then eventually like I started, like it started getting more like FPIES focused. Like I cut all legumes from my diet and she did like, that helped a lot. But there was still like, she was still having blood in her stool and she was still like not gaining weight like that well. Like at one point, I think she had gained like two ounces in a month from like month, like, you know, like that and that's, that's not typical weight gain for anybody that's not familiar with infant weight gain. Like, that's not what you want to see and what she wasn't losing weight at that point. But like, it was so sluggish, like her weight gain was so slow. And finally, kind of out of like exasperation. Oh no, I cut corn.

So that was the last thing I cut from my diet was corn. And by that point, like, it was the only thing left that I felt like kind of made sense. And corn is really, really hard to avoid. It is, it is in everything. Things that you would never think of. Like, every, everything has corn in it. But, I finally, I cut corn from my diet. And in like 10 days, she gained a pound. 

Brianna Miluk: Oh, I'm sure that was so exciting. You're like. 

Bailey DeMario: But she's still had blood in her stool. 

Brianna Miluk: So, you're like, okay, we've got a little bit better. 

Bailey DeMario: Yeah. It was like this, like it was, it was, it was two, two and a half months of insanity of trying to like figure this out. And that, and that's when like, I was, we were super happy she was finally gaining weight. Like cutting corn made a huge, huge difference. She never threw up again. But there was still something going on. So, I kind of like threw my hands up in exasperation and went on like what they call a total elimination diet. And I picked like seven foods, literally just seven things. I was like, pork, potatoes, broccoli, Romaine lettuce, extra virgin olive oil, tomatoes, and chocolate. I kept chocolate because we need. 

Brianna Miluk: That's a good one to stick in there. Yeah. And more than nutrition, you also need it for your soul. 

Bailey DeMario: And that was all I ate, literally like all day, every day. That was all I ate and she was better in like three days.

Brianna Miluk: Wow. 

Bailey DeMario: And that was, yeah. And I was okay with eating. 

Brianna Miluk: Okay. So total elimination diet. Cause obviously just to kind of give a little background of different types of elimination diets, there's like Bailey talked about to start out where you just like eliminate the top allergens. Sometimes people will do like the top six.

Sometimes people will go straight to top nine. Some people will do like you eliminate everything except for a select amount of foods, which is typically considered that total elimination diet. And even within that, you're looking at certain things that are less likely to cause reactions. But with that being said, obviously I'm sure many people are thinking like, Well, how do you get the foods back in?

Right? So, you've gone down to seven foods. You're like, oh, it's working. We're good. But you hope to add more into your diet, right? You hope that you can kind of add more. And that is one thing about FPIES is majority of children grow out of this. And will eventually be able to eat their trigger foods.

Now some children, children, not all of their trigger foods, not always. But many children will, will be able to eat a lot of those trigger foods again. And so, I would love for you to kind of Bailey, give us a little bit more on what was your sort of next step once she was feeling better and all of that, like, what's the process like, and who helped guide you the most on reintroducing foods?

Bailey DeMario: Yeah. And I think this part of our story, it's definitely starts to like be much more cohesive with how a lot of people experience FPIES because by this point, like, Oh, they call it baseline. Like when, when the baby finally gets to the point where they're not having symptoms and stools are looking normal, you know, she was like six and a half months old. And we were like, wow, our poop is yellow. This is crazy. That can happen. 

Brianna Miluk: Celebrating poop colors and all the things you never thought you'd be celebrating. 

Bailey DeMario: Yeah, it doesn't look like jelly. It's not like, it's not just pure mucus. It's not bloody. It's not green. Like, it's just, yeah, it was, and it was crazy.

It took, you know, she was literally six months old when she finally had like a healthy stool. But once, once she had been doing okay for a little while, there are two different ways that you can do food trials with an elimination diet. Like, As a breastfeeding parent that you can do indirect trials, which would be me eating the food and then seeing if it elicited a reaction in Claire, or you can do direct trials, which is the child eating the food, which I think, like, intuitively, we can all kind of probably guess that direct trials are going to give you the easiest to understand information, you know, you don't have to kind of like, like try to figure out the timelines of like, well, I ate it at this time, which means it was in my milk by this time. You know, like it's a little bit easier if you're just like, well, she had a blueberry. 

Brianna Miluk: A little bit easier for the tracking process. And I think with both of them. You're looking for a reaction in the child regardless. So, you know, thinking, thinking through it from that lens, like regardless, we're looking for a reaction, but it might be easier to track just with that direct trial. 

Bailey DeMario: Yeah. So, we, we opted to only do direct trials once she was good to start solids. And I'm not recommending this at all. I'm not saying this is the right way to go about it, but we didn't, we didn't really have a lot of guidance on that process. By this point, we weren't really talking to medical professionals that much because I, I felt like I had a really good grasp on what we were doing and what we were looking out for.

And, you know, if as a parent you don't feel like you have a good grasp on it and you want that extra support, there's absolutely nothing wrong with that, like, absolutely go talk to your medical professional and ask them for a plan, but we kind of just, like, used all of those articles I had read and, like, learned how to do food trials and there were, there were bumps along the way.

Brianna Miluk: I think, you know, you, you had her medical team. If you needed them, you know, like you, you had her GI and her dietitian there for questions and support and moving forward from there. But it is kind of one of those things like reintroduction of allergens is like, okay, go do it and see what happens. Like that's, that's kind of the role. So. 

Bailey DeMario: Yeah, yeah. So, we just, we just started doing our trials. And they, we like definitely the. The format of our food trials changed over time as we figured out, because with every kid with FPIES, their reactions can be a little bit different. So, you know, I'm going to actually pause on the trial thing for a second, circle back to it, because I realized I didn't really go into this in as much detail as I could have.

With those two different kinds of FPIES reaction, the acute reactions versus chronic reactions, if your kid is having acute reactions, that's... Really, really easy to figure out because they happen not as fast as an IgE allergy, but much faster than a chronic FPIES reaction. So, you know, if kiddo eats avocado and then is projectile vomiting two hours later, avocado is a trigger.

But if kiddo eats avocado and is having diarrhea, that starts two or three days later, you know, or is having like, like a lot of kids with chronic FPIES have reflux. And that might be like the first symptom that you see of a reaction. And then after they start having reflux, then they start having diarrhea and then they start vomiting more.

And you know, like, it can be like more of this, like gradual worsening of symptoms. And then they start to like not gain weight again, or, you know, like as that like intestinal damage starts happening. So no, no version of FPIES is easy. And I'm not saying that like one versus the other is better to have, because obviously acute reactions are awful in their own way.

Like no one wants to take their kid to the hospital because they're vomiting so much that they need fluids. Like that's not great by any means, but from a food trialing standpoint, I think it's a little bit easier to determine triggers if your kid's reactions are primarily acute or completely acute.

Claire's reactions were primarily chronic. So over time, we figured out that we needed to make her food trials a little bit longer. And another like strange thing about FPIES, and this can happen for acute reactions or for chronic reactions. A lot of times the kid eats a trigger food multiple times and everything's fine.

Nothing happens. And then they don't have that food for a period of time. Like they have a break from it. Say it's just like a week of, Oh, like he didn't eat avocado this week. And then when they eat it again, that's when their reaction happens. So, I don't, I don't know the stats on like what percentage have the reaction after the break versus like no break is needed, but it's, it's a very common pattern for there to not be a reaction at all.

And then to take a break from the food and then to have a reaction. And that was Claire's pattern for sure. So, we, over time adjusted her trials a lot and our like, Ultimate schedule ended up being that she had that we give her the food for four days, and then we take like a four- or five-day break, which is mostly just depending on like our lives.

And if reintroduction days on a good day or not a good day, then our break will be longer. And then, and then we actually have a very extended second half of our food trial. We usually wait like a minimum of like seven days and go up to 10 days of just reintroducing that one food and see if there's any symptoms.

Because for her, like her reactions can take longer to develop. So just for the sake of not making the wrong call about food because that that happened early on our trials were too short and we didn't know and then we would be like wait a second like she's having a reaction now but is it is it because of this or was because that thing we were trying last week, you know, so now we give ourselves a lot of buffer room, so we can really feel confident that this food is okay.

And, you know, move on from there. So, like all said and done for us and for a lot of families, like I know other families that have similar trial patterns can take like two weeks to get one new food in her diet. And, you know, it's, it's a very slow process and it, and that comes with its own challenges, of course, you know, like having a, that like delayed introduction to the start of solids can be in, like, can cause other issues to develop, which is like, when we kind of like get into that like realm of having the pediatric feeding disorders that pop up with kids that have food allergies, like for a whole host of reasons, like they're, they're scared of the food that they're eating, or they, it took way too long for them to be able to eat, or they're on this extremely, you know, delayed introduction schedule.

So there's, there's so many different things that can happen there that Make the feeding process more challenging just in and of itself, you know, and then, and then like that can tie back into your food allergies because you have a kiddo who's not too keen on eating new foods, but you need them to eat it so you can find out if they're allergic to it or not, because there's no. 

Brianna Miluk: Right. It's like the whole mix of it and then, you know even just, I would, I would love to know what you all did, but like just tracking the foods and tracking the days and try, I mean, the amount of time and energy that it places on the caregivers during this process. And, you know, like you said, you have a child who's scared of trying something new, but you need them to try something new.

And you're telling them like, I need you to try this so that I know if it makes you sick. It's just like, Yeah, I mean, very, very difficult, obviously. And of course, you're trying to select things that are less likely to cause a reaction, but you truly just never know. You don't know if it could in every situation.

So, I do want to Get more into how it influences the four domains of PFD. But before we do, how did you all track? Or how are you currently tracking this process? 

Bailey DeMario: We definitely like our current tracking process is my brain, but. 

Brianna Miluk: I love it. Well, now you've just adapted. It's just part of it. 

Bailey DeMario: Yeah. Yeah. You're, you definitely, you definitely adapt. That's a great way to put it. I think, I think that that would resonate with all FPIES families and all food allergy families in general, I'm sure, but FPIES in particular and any other, any of the other non IgE allergies that cause you to have to do the same things.

Like FPIES isn't exclusive in terms of like having to do food trials and track food and things like that. There are, there are other non IgE allergies that you also have to do that for. But. Yeah, no, I made a spreadsheet. 

Brianna Miluk: Yeah. So, I was thinking, I feel like you just would have to. 

Bailey DeMario: Yeah, yeah. Well, and early on, we didn't, when we didn't realize that that she was one of the kiddos that reacts after breaks, we weren't as consistent with making sure she was eating her safe foods all the time and it was like, it was probably like one of the most like heart wrenching moments of our like early food introduction period because we went on vacation and she had, she had passed watermelon at home and we went on vacation. We didn't have watermelon and we were on vacation for like, I don't know, six days and we came back home and she ate watermelon and had a reaction to it.

So that was, that was like super disappointing. And we were like, Oh, okay. I guess that's, that's something we have to consider, you know.

Brianna Miluk: Yeah, you have to add that in too. That's the chronic reaction tracking, but also the gap. 

Bailey DeMario: Yeah, because even in that, like, even, even if a child has passed a food, like during a food trial with a break incorporated, you know, they have the food, they take a break, they have it again, if, if they go too long without eating it. They can develop a response to it, which is like, like, there's so many things about FPIES that you're just like, why? As if it's not already like. 

Brianna Miluk: I feel like that's like perfect. Just why? No reason. There's no rhyme or reason. There's no like, yeah, there's a lot of FPIES that doesn't make sense. 

Bailey DeMario: Yeah. And that, that particular piece of like, you have to always make sure they're eating the food regularly because all their safe foods are like potentially in jeopardy, you know, that's, that's terrifying.

And yeah, yeah. So, we, we did, we made a, we made a spreadsheet had a column for her safe foods and then literally just the days of the month, like one through 31. And we would, like, apple, check, she had it on the first, check, she had it on the second, oh, she didn't have it on the third, like, check, she had it on the fourth.

And we would do that for every single food. And we probably continued doing that a long time. Honestly, until she had so many safe foods that they didn't fit on the spreadsheet anymore. Which that took a long time, too. It took us a very long time for her to have that many safe foods. But, yeah. Yeah, the spreadsheet and helped a lot and helped us like stay consistent with knowing because like, if it was me feeding her versus my husband feeding her versus like when I was in grad school, we had a nanny.

So, like the nanny, like that was like a really simple, really easy way to keep everybody on the same page. It just stayed on our fridge, you know, and we checked the boxes. 

Brianna Miluk: Yeah. I think that's a good point, you know, recognizing like who all the feeders are so that you make sure that everybody is on the same page with it because it is something that like if one thing is missed or one thing is different or it could completely change the whole trial period and then you have to start over because you're not sure what it was. So, it's a great point to bring up. 

Bailey DeMario: Which I definitely struggled with, like relinquishing control as far as like food trials went. I was the only person who did them for a very, very long time because and my husband has like a very nontraditional job. He's an airline pilot. So, he's in and out a lot, you know, and I'm like the only constant in Claire's life. And so, I just, I had a hard time with anyone else really having a role in that. 

Brianna Miluk: Yeah. 

Bailey DeMario: Because like, I don't know. I mean, there's, there's so much that you can't control about having a sick kid. So, I think you kind of latch on to the things that you can and. 

Brianna Miluk: Yeah, absolutely. It's the one thing you can like, you can control a little bit. You know, even in, in the situation where like the response is uncontrollable, at least you can control how the trial period goes. 

Bailey DeMario: Yeah, and like feel super confident that everything happened the way that it should have. And, you know, she ate enough of the food and like at the right time. And, and I know what time, because if she were to have an acute reaction, like we do still need to know when she ate things which she only, she's only had one like more severe reaction during our entire food trial process. And it was right on her first birthday. We decided to try a wheat and it was not good. It was, it did not, it did not go well. And that was, she, she got very sick. She didn't, she actually got very, very sick and it like caused really bad, like gut damage. And she ended up losing like a lot of her safe foods because like her digestive system was just so, so messed up from it. And then we never tried a grain again. 

Brianna Miluk: Yeah, you're like, and after that we will not be using grain. 

Bailey DeMario: Yeah, we already, I had already figured out that she reacted to oats through breast milk and corn was a huge factor and we were just like, okay, like maybe we should just be no grains for now, you know. 

Brianna Miluk: We'll avoid those for now. Yeah, I think to you know, kind of reflect, cause obviously like we talked about very briefly how FPIES is something that many children grow out of. Right. And. However, you don't want to be like, Oh, full elimination diet until they're three, because there's other implications of that. So, you know, cause I could see some people being like, well, why not just avoid everything until they're three?

Like, why even go through the trial process? It's like, well, cause you can expand quite a bit and you can find a good variety that the child will be able to eat until that period of time happens. Is that sort of how your experience was with it? You know, kind of thinking through like, okay, yes, we, we, you know, expect this to be grown out you know, eventually, but we can't just wait because of all the other developmental considerations too. 

Bailey DeMario: Yeah. And I think that like. That goes back a lot to like my own knowledge of, of feeding and my own clinical experiences, like working with kiddos on, on feeding therapy and things like that, like in the ABA world, and then eventually in the SLP world as well.

And, you know, knowing those ramifications of a child having an extremely limited diet, like there's a lot that can come out of that, that you don't want to see. So, I was keenly aware of that, and it was something that we worked on from day one, trying to make sure that we gave her As much variety as possible within her individual safe foods and then also within like the group of foods that she was currently eating and even still like she still had a hard time, you know, and like we were we were doing all of the things that you would you would encourage a family to do in this situation and she was, it was still a reluctant experience for her to Eat new food because she just had so many texture versions.

And like, so like that, like, you know, if, if all she's ever eaten for three weeks of her life is blueberries, you finally give her something else. And she's like, what is that? That's not a blueberry, you know? So we definitely, we focused a lot on just like really trying to figure out how to increase variety in anyway, you can like if a safe food is quinoa, for example, which that's a very common FPIES safe food for any listeners with kids with FPIES, if you haven't trialed quinoa, it's a great thing to have in their diet because there are a lot of things you can do with it. So that's what I would think about when I was thinking about food trials, like obviously nutritionally is this good for her diet as well? Like, does this help broaden her diet? But she was still exclusively breastfed and that is complete nutrition through the first year of life. So, I wasn't as worried about the nutrition side of things. But I was just thinking about how can we pick foods that Really give her the opportunity to explore a lot of different variety, even within just one type of food.

So like quinoa for example. Obviously you can just cook quinoa and it's, you know, we, we know what quinoa looks like, but there's so many other things you can do too. Like there's quinoa flour. So, I learned how to make pancakes for her and that ended up being something that was a huge staple in her diet for a long time.

And circling back to what you mentioned earlier about like how do you get them to eat the food, if your kid has something that they really are really into. It can make it a lot easier to do the food trial process. Claire would eat pretty much anything as long as it looked like a pancake. So I, I, I ran with that, you know, like, we made pizza pancakes when we were trialing tomato, like, I called them pizza pancakes because they had tomato in them, they had tomato sauce in them, and like, we did this with everything, like, I would, I would blend down broccoli and put it in a pancake and she would eat it.

And, you know, but there's, so like, you could just eat regular quinoa, you can use quinoa flour to make pancakes or muffins or things like that. There's quinoa flakes, which are kind of similar when you cook them to like an oatmeal. So that's a whole different kind of texture. So just like really thinking about how many different textures can I get out of this one food. And like, keep thinking on it and do weird things and, you know, like. 

Brianna Miluk: I think that's so, yeah, I mean, that's so important. And, you know, you are aware of that as someone who is studying speech pathology at the time and feeding and to support oral motor development moving forward and to decrease the child from having, like, extreme sensory aversions because they've never had a certain texture before.

But I think also for any parents that are listening, like this is where you can lean on a feeding therapist to help you to be able to say like, my child's only really eating one texture because that's like how they feel safe because this is like a few of their safe foods and you're having trouble advancing that, or even just thinking about the oral motor skills involved with a pancake versus the oatmeal versus the, you know, creating quinoa in all these different ways. You know, it can, it, it, there is a role that they can play with those foods and we can explore foods in a variety of ways to, to help with that part. 

Bailey DeMario: Yeah, yeah, definitely. That's definitely something that like I've, I think, like, because of all of my personal experience too with it and just like seeing firsthand how creative you have to be.

It's something like, I was, I was really fortunate to have the opportunity to have a clinical placement where I was at a private practice that had a lot of feeding therapy and I was super pumped about it. It was my favorite placement of I had, I had four clinical placements in my grad program and that one was by far my favorite cause I got to be in therapy like every single day.

And most of our kiddos were were sensory based, but even still like talking to parents about that, like, I was like, Hey, actually, like, I know what you're going through, you know, and this is going to sound wacky, but like, think about the different ways that you can present this food, like very unconventional ways.

It doesn't have to make sense. And I think that was like the big thing that I would like really encourage parents to lead on is like, it doesn't have to make sense. You know, just because it's not something that we would typically eat, just it's not the way that we would usually make eggs, like, you still can, there are no rules, like all of these boxes we have around, around how we like interact with food aren't real.

It's all it's all arbitrary. And you can you can do whatever you want. If you can think of a way to provide a food that's different from how you've done it before like do it and you know maybe your kid likes it maybe they don't but like, you don't know until you try. And being able to just like, like, especially in those kiddos that have extremely limited diets, either because of medical reasons, or, you know, lots of kiddos on the spectrum that only have like a very select amount of foods that they're willing to eat.

And like, that was, that was our primary caseload at my clinic. They, like, there's so many little tiny tweaks you can make to a food and those little tiny changes over time become bigger changes. And like, you have to start somewhere and maybe right now, the only thing they're eating is this one food, but if we can change it just a little bit and then just a little bit more and then just a little bit more, like over time, that turns into something bigger and you have to be patient and you have to be creative.

Brianna Miluk: Yeah, I think that's like the biggest point is just being patient because it can take a long time for a child to fully accept something new or novel even just with a small change of it that can be really difficult for some kids and, you know, being able to build off of kind of like, you know, reflecting back on, on your daughter of like: what is something she liked? Pancakes. All right let's build off pancakes. Like, if that's how we're going to get through some of these pieces, then like, so be it. We're gonna, we're gonna work through that because priority right now is introducing that food, is trialing that food. I'm not worried about some of the other pieces, and I think that's an important layer too, is thinking like, when you're trying something new for the first time, like stick with something safe.

Don't and I, I talk about this when I when I'm talking to parents or mentoring people about like, we need a child to build oral motor skills, accept a new texture, but we also want to expand variety. It's like, if you expand variety at the same time as building another skill, that could just be cognitive overload.

Like that's just too much. So, if we want to expand variety, like let's do that in a safe manner. And then we can worry about doing it in another form. And I think that's very similar to the, you know, technique you're taking of like, okay, if you like pancakes, I'll put whatever in a pancake. And then we'll worry about doing some other ones after we've identified it as being safe.

Bailey DeMario: Mhmm. Yeah. That was definitely a big, a big thing that like, and it's funny because like coming from like the clinical background of like, we want, we don't want to encourage rigidity. 

Brianna Miluk: Yup. 

Bailey DeMario: But sometimes, sometimes it's okay. It's like, it is okay if your kid needs the rigidity in order to get through a food trial in order for you to figure out if they can have a food or not.

And I think that's something that like, you know, I mean, we connect on Instagram. I have, I have an Instagram for, for all things FPIES and one of the things that I like shared a lot and I, I don't, I don't talk about it as much now cause Claire's so much older and it's not as much of a problem, but like when she was a baby and we were, and I was like sharing a lot of our journey, like just really emphasizing, like, it's totally fine if your food trials look like this and like you, like, they, they need like this exact structure to be effective. Like pancakes were a big thing for a while. And then we, we found the, the wonderful joy that is quinoa puffs. They're like, like little baby puffs, but they're made out of a hundred percent quinoa. And I think like all, all FPIES parents know what I'm talking about.

It's like a, it's like a, kind of like a joke in our little community. You see the kid with a little star shaped quinoa puffs and you're like, I know what those are because they, you know, it's like one of the few, like baby snacks that they can actually eat. But so, we, we started making what we called squishies.

Like, I don't remember how that started, but it was like, Claire would eat anything. As long as we took a little bit of the food and smooshed it into a quinoa puff. And then she would just pick up a puff and eat it. She'd, we'd smush a little bit of broccoli on there, she'd pick up a puff and eat it. Smush a little bit of beef on there, she'd pick up a puff and eat it.

Like, she would eat anything if it was squished into a quinoa puff. Do we want her to eat all of her food squished in quinoa puffs? No, but that's a problem for later. 

Brianna Miluk: Yeah, like we have to prioritize a little bit. And you know, thinking too, like, going back to the fact that like, She's going to feel a little anxious about a new food, not just because it's new in texture and flavor, but because kids are smart.

They know that sometimes they get sick from stuff. They know something could make them not feel good. And so, by prioritizing her feeling safe and trusted and like connected around the mealtimes is way more important at that moment, than trying to be like, let's try just this cooked broccoli. It's like. 

Bailey DeMario: You have to eat it. 

Brianna Miluk: It's just not the time. Yeah. And you have to eat it. It's like, it's just not the time for it. 

Bailey DeMario: Yeah, I've had, I've had so many conversations like private conversations on, on Instagram with people messaging and asking questions and like, I don't know what to do because they have to eat the food, but like, they won't eat it when I tell them to, and I'm like, hey, like scale back. Like don't tell them to eat anything, first of all. 

Brianna Miluk: Yeah it's so hard though, right? Because as the caregiver you have so much pressure of like, I just want to expand their variety, and I want them to be able to eat more, and then you have the child that's like, mm mm, no, not gonna happen, I'll stick with my quinoa puff over here.

Bailey DeMario: Right, and then like, You know, like the, the very warped relationship that a lot of us adults have with food in general and and eating. And so, when you're trying to explain more of like a responsive feeding approach to parents that didn't have that approach themselves and aren't familiar with it, like, it can be, it can be a lot to pun intended swallow.

Brianna Miluk: Yes. No, yeah, I mean the the diet culture influence of, you know, our our parents and our generation. Well, I don't know if we're in the same generation, but probably. 

Bailey DeMario: Are you a millennial? I am. 

Brianna Miluk: Okay, perfect. So, the millennial generation, we had so, so much diet culture influence on, to kind of navigate through. So that's a whole nother layer of it. Okay. So Really quickly I would love to just kind of mark on how FPIES and, you know, I think just non IgE based allergens in general, too, how does it influence the four domains of PFD, because I truly think that this is one area we've, we've briefly hinted toward it, but I think this is one diagnosis that really kind of hits on all of them that we have to be aware of, or at least be cognizant that it could, if we don't take preventative measures and also recognizing that.

Prevention of feeding and swallowing disorders is part of our scope of practice. So, recognizing like we may be treating part of it, but we also need to be preventing other aspects of it. So, do you want to go through the four domains and kind of give a little 

Bailey DeMario: Actually, it's funny. I don't know why I didn't even think to pull it up. I didn't think about it until this exact moment in time. I should have pulled it up though. So for my grad program, we had to do- it was like our one of our final projects in our last semester, we had to do a prevention project, and we pick a topic and talked about how SLPs can have a role in like preventing some kind of issue, and naturally I did my, I did my project on food allergies and feeding issues and like specifically it was like reducing pediatric feeding disorder in infants and children with severe or complex food allergies. So, I, you know, something I'm super passionate about as a parent, and as a, clinician and obviously just have a lot of intimate knowledge about but also I'm always interested in learning more.

So. It was kind of like a fun way to like, share what I already know and then pick up on some new information too. And also, like circling back to our, our love for research, like finding the evidence based to support things that I already knew. Like, I know these things are true, but like, what's, what's backing up that, that claim, you know? Cause it's always, it's always good to be able to. 

Brianna Miluk: What's the theoretical base behind it? What's the science behind it? Yeah. Yeah. 

Bailey DeMario: And like, is it like, has it been empirically shown to be accurate information or is it just like, colloquially oh yeah, we like, we know this is like a thing, you know, cause with FPIES in general, there isn't as much empirical support for a lot of the claims that are made. There, you know, anecdotally, we still know that like these things are true, but there definitely needs to be a lot more research to show that they're true. Like the fact that breastfed infants can have reactions from one and you know, other things as well. All of that to say, I did my project on this and it wasn't, I didn't necessarily break it down like by the four or did I, I don't know actually. No, I didn't. I just talked like in more like broad strokes about like common feeding issues associated with food allergies, but those all are tied back to those four main domains of having a pediatric feeding disorder.

And I think like the medical domain is the one that I could speak on like the least, but it's definitely still there. Like there's definitely still a presence there, but I feel like a lot of the medical implications of having a bias overlap with like the nutrition implications a little bit. And it's a little harder to tease those apart because obviously, you know, if a kid needs a feeding tube or something like that, like if their nutrition is so compromised that they're experiencing malnutrition or failure to thrive or things like that. 

Brianna Miluk: I think even the some of the medical piece is often the first like signs or symptoms. 

Bailey DeMario: Yeah. 

Brianna Miluk: That are noted. But it kind of the medical piece kind of filters itself out once that diagnosis is there because it's like, now we know, and then the, the medical piece is managed. And then we're looking at those other three domains still. 

Bailey DeMario: Yeah. Yeah, definitely. And I think like, like FPIES in particular that like more so than an IgE mediated food allergy, you do have like that domain of nutrition that can be massively impacted. And I would, I would honestly wager almost always is like, to some degree, you know, if you have, if you have these kids that are on such limited diets from such a young age.

Assuming, assuming that you're, you're, we're talking about kids that get diagnosed like very early in the introduction to solids, which is typically what happens you know, from that point forward, they probably are on this food trial schedule. And all of a sudden, like maybe their nutritional needs aren't being met the way that you'd like them to be.

And it's, I think it's like, it's all fine for the most part until you get to that first birthday. And that's when things can really start to fall apart. If they haven't, if they have, if they don't have like a wide enough base of their diet yet by the time they turn one, but then they're also not no longer receiving complete nutrition from like breast milk or formula.

You get into that, like, Oh, what do we do now? You know, and you hear, you hear a lot of kids that are like older kids that are on like supplemental nutrition. Because like, they just have so many massive gaps in their diet and you can't, you can't fix it quickly. Like it's not something that has quick fix. So. 

Brianna Miluk: I think especially like honing in on, you know, we talked about it being difficult to introduce some new foods to children and while some kids like Claire will be like, you know what, if it's on a puff or it's in a pancake, I'll be okay with it. Some kids aren't, some kids aren't okay with it ever. And so, there are some circumstances where it takes significantly longer to work new foods back into the diet that you, you have to have a supplemental nutrition, you, you have to have them taking certain vitamins or and the supplemental nutrition may be in the form of something orally that they're taking. But for some kids, it might be a feeding tube until they are okay. Cause we don't want to force feed. We don't want to force them to take anything orally. They're not comfortable with because long term wise that, you know, that's a whole other slew of issues of psychosocial implications.

But sometimes that's why too, because the kid is just like, You could put it on anything and it's just not going to happen right now or it's not going to happen consistently enough to really know if it's a trigger. And that's kind of where, you know, like recognizing those, those differences with it too.

Bailey DeMario: Yeah. And then like, it's so, it's, it's hard to talk about like each domain individually because they're all like this. 

Brianna Miluk: Yeah. Oh yeah. I think that's where like the, when we, anytime I talk about like the domains of pediatric feeding disorder, I think of it in a circle because there's like so much overlap, but like crisscrossing and like, you know, it's all, it's, yeah, it's all over the place.

Bailey DeMario: Yeah, it is. Because like, you know, when you think about like the kids that have that, like, Need for a tube feed that just bleeds right into those feeding skills being affected. And, you know, like if you don't have the opportunity to explore all of these different textures, like, like we would hope that they do.

And those oral motor skills aren't being you know, developed on the trajectory that you'd like, because a lot of the nutrition is coming from a tube feed or because a lot of the nutrition is coming from like very similar textures or consistencies, you know, things like that, like it, it's like a snowball, you know, you have, you have this, this medical condition that you have a name for, and you figured that out, but then next you have to figure out how to manage the ramifications on nutrition and that's the walls into like, but now they're, they're limited nutrition intake and like, you know, the, the ways that they're getting those nutrients.

It's great. Like, if you need a tube, like have the tube and you know, like we need that to keep them safe and healthy. But there are things connected to that too. And it's like, it just builds and builds and builds or it can. And. 

Brianna Miluk: Yeah, no, absolutely. And that's, yeah, that's where PFD recognizes all of those different domains and, you know, I think also being aware that these domains are dynamic.

It's not like, oh, medical is managed, check, never have to worry about that again, because you might, you might have to go back into that. Or, Oh, we have the nutrition covered with the supplement. Check, we're done. It's like, no, we're not. Like there, there may be implications we have to go back to and then. 

Bailey DeMario: *Talking at the same time* Their nutrition needs change.

Brianna Miluk: Yes. Yeah. Now they need even more volume and they can't handle the volume or what, you know, whatever that may be. And yeah, recognizing those different, those different pieces and that, you know, pediatric feeding disorder has four domains to it, but they are not always attributed to equally in every single child.

And it's not always going to be- remain the same in each domain. Like it's very dynamic and changing. And it's important that we as clinicians keep up with that and recognize that like a family could come in and things are, you know, going well in one direction, then they say, hey, this happened in the last week and you have to be aware of the other aspects that can can influence and then also going off what you were saying Bailey about recognizing like if we have the medical and nutritional quote unquote managed, right? Like, if we get it to the point that it's managed, the child's growing, they're not having, you know, extreme reactions, vomiting, GI distress in any way. Now you have to think about, like, what are we offering that's going to prevent ongoing sensory motor implications from an oral motor perspective that's going to, you know, encourage a more positive mealtime experience.

So, we're not inducing any type of psychosocial implications, especially when we think about long term relationships with food. And, and those aspects around it. And then I also always like to remember that like psychosocial domain also considers the parents and the caregivers and the feeders. And it's not just the stress and anxiety the child having, but also them as well.

And we have to make sure to recognize those pieces and that that might also ebb and flow. It's all, it's all dynamic and changing so bringing that up. 

Bailey DeMario: That's funny. I was, I was kind of chuckling because I'm like looking at my little brochure and that was like one, one of the sections, like I titled it, like, remember adults set the tone.

Brianna Miluk: Yeah. The whole thing gets its own panel. 

Bailey DeMario: Yeah. Like adult, like adults do, they set the tone for mealtimes and children, even, even, even babies, you know, like young, young babies that are just starting to eat and older kids that have been eating for a while and everybody in between, like they can sense that parent stress and, and, you know, like obviously as feeding professionals, we're, we know that we don't want to put pressure on kids to eat, but as a parent in, in this like unique situation where the kid has to eat this thing in order for you to have your answer. It can be really difficult to like walk that line of how do I moderate my own reactions to the situation so that they're not creating a negative experience for the child that already has so many negative experiences with the eating.

Like we don't, we don't wanna add any, any more layers to that cake. Like they have enough going on on their plate with like being comfortable and secure and being able to eat the things we give them. And if, if we're stressed and it's obvious that we like really, really, really, really, really want them to eat this food.

It's going to make them pull back. And that's, you know, it's, it can be, it can be such a tricky thing as a parent to like, try to like taper your fear. And remember that even if today doesn't go well, like there's tomorrow. 

Brianna Miluk: In it for the long gain, long, long gain, not the not the short, short bits. You really want the long, long term changes, but yeah, it can be very, very difficult in the, in the moment, especially when you, you may have other outside pressures as well that are like.

Just make them eat it. Just, why can't you just, ugh, if they come stay at my house for a weekend they would eat it, that's always my favorite. I'm like, mm, that doesn't even make sense, but okay. So, recognizing those pieces for sure. So, okay. Go ahead. Oh no, I was just gonna say it's like another, 

Bailey DeMario: another plug for Dr. Taylor Arnold's Growing Intuitive Eaters Instagram.

Brianna Miluk: She's so good at those. 

Bailey DeMario: Her, yeah, her little role plays. 

Brianna Miluk: Roleplay phone calls of conversations. 

Bailey DeMario: And we don't have as much experience with that because like Claire’s never, never been away from either of us. Like, she's never in her life spent a night that one of us isn't there. And I mean, part of that's just like our, our own family dynamics as well. Like we don't have, you know, but even if we did, I don't know that we would because we know how to set her up for success during mealtimes and it's something that like has been such a huge focus for us for her entire life is making sure that like we're not pressuring her to eat and we're giving her a lot of variety and there's always safe foods on her plate right next to the thing that we're hoping she eats.

And I say hoping because we're not trying to get her to eat it. Like, it's just there, and we're hoping she eats it, you know? And even like, like, even the pancakes and the puffs didn't always work. Like, there were, there were definitely tons of times where, like, There was no way she was going to eat something and it's hard. Like that's, it's really, really hard, especially like, like as a breastfeeding parent, that's on this extremely restricted diet, you know, there's a lot of. 

Brianna Miluk: You're like I want that food back. 

Bailey DeMario: Yeah. Yeah. It can be like, you know, speaking to like the, the parent role and like, not even just the feeding, but like for, for, for parents that are on those elimination diets, like that was like the hardest thing I've ever done in my life.

You know, I was on an elimination diet for 13 months and it was really, really, really hard and it was even harder when I was trying to get Claire to add something to her diet and she wasn't having it. And it was like, even, even like, like strange things, like, like, like adding tomatoes or, you know, anything like that.

Just like, I'm like, I could have one more thing back in my diet, you know? And I think in a lot of ways, like. It definitely affects the child, but they don't know what they're missing as much as adults do, like a breastfeeding parent that has made that much sacrifice. Like you're reminded every single day of all of the things that you can't have, you know?

And it can, there's like definitely a lot of heartbreak there as well when your food trials aren't going the way that you want them to, but like, it's temporary. And I think that's something that like really helped me as a parent, you know, like a having a child that's going through this and is having all these like really hard challenging like adverse experiences.

And also, as like a parent that's having all these challenging adverse experiences like just constantly reminding myself, this is temporary, even, even if it feels like It's never going to end. And it's not something I like emphasize a lot on my Instagram too. I feel like I circle back to that concept over and over and over again.

And things that like information that I'm sharing and posts that I make is like, it does get better. Like this is not forever. It feels like it's forever. And then one day you realize it's not. And like when you're in it, especially early on, especially with FPIES, cause there's so many things that just make you absolutely scratch your head and throw your hands up.

Like none of this makes any sense. But you'll get it. Like, you'll adapt. You'll figure it out. You'll have, you'll come up with your, your system and you'll know how to manage it better. And it'll just feel like second nature. And none of its forever. And like, I just, I, I try to remind families of that a lot, because it can, it can really feel like, like it's never gonna ever, ever get better.

Brianna Miluk: Yeah, can feel like you're gonna sit in, in the suck for, for a long time. But I, I'm so glad you brought that up and reflected on it and shared, you know, your experience and journey with it. You know, including the hard, hardships and the hard times and the times that it felt like this would never end.

And you know, it's not ended, but you're, you know, you just have a lot better grasp on it. And that does happen. It happens. It gets there for sure. 

Bailey DeMario: Yeah. You, you learn how to navigate. That's not to say that it's not still challenging. And I definitely have my moments where I'm standing in the grocery aisle and like the mental load of just reading every single package that you buy before you buy it and then reading it again when you get home to make sure you didn't miss anything and then reading it one more time to make it right before you give it to your kid, you know, like all of those little things and like the heartbreak that comes with that of like you read 10 packages and maybe they can eat one of them, you know, and like, that's, it's a lot and the, the feelings definitely hit you in very unexpected places, like at the grocery store and you're like, wow, this really sucks. And it still sucks. And that's okay too. Like I'm not, I'm by no means, am I saying like, it gets magically a hundred percent rainbows and sunshine better all the time. There are definitely still times. It's like, wow, this is brutal.

I would really love for this to not be our life anymore, because even when it gets easier, it's still hard, but like my, my, my personal motto with, with Claire and everything, it was always like, this is tough, but we're tougher and like, we can handle it and it's temporary and it's okay to cry in the grocery store when you're reading a bagel bag. Like, that's fine. 

Brianna Miluk: It's totally fine. It's absolutely fine. 

Bailey DeMario: And people will probably think it's because of diet culture.

Brianna Miluk: Right, right. They think you’re; they think you're reading the calories on the back. And you're like, no! 

Bailey DeMario: I'm intimately aware of that. Every time I read a package too, I'm like, people probably just think I'm just like, so concerned. Or like, yeah, no. 

Brianna Miluk: And you're like, I'm literally trying to figure out how they wrote, like, wheat in a different, encrypted manner, because it's actually like the scientific like, chemically written form of wheat. 

Bailey DeMario: Maltodextrin. 

Brianna Miluk: Yeah, I was gonna say, I'm sure you've had to like, Analyze all of those different things and you're like, So this means... 

Bailey DeMario: Yeah. 

Brianna Miluk: XYZ, because it's... 

Bailey DeMario: There's like 200 different ingredient names that could indicate corn. 

Brianna Miluk: Yup. Oh, the corn one is big. Well, and I think too, like, you know, we have policies are- you know, in place in- in the United States to like, okay, top nine allergens, you have to identify that big bold, you know, has to be on the package.

But not all these other ones, not all these little ones, like you don't have to know if something has avocado in it. That's, that's not listed as one that has to so you are spending a lot of time and I think just acknowledging the pieces of like being able to read the packages, understand it, the health literacy that's involved in that, being able to like have access to something where you can look up what an ingredient means, look up all of these different types of information is so challenging.

And there's so many different layers to that and so much time and mental energy that, that has to be recognized for sure. So, okay, I am going to shift us really quickly to a rapid-fire question round. One of them you already, I feel like, answered because I was going to say what's something you would say to a parent who has FPIES, but I'm going to rephrase it just a little bit.

So, with this rapid-fire round, I want you to answer in just like a couple words or a sentence. You don't have to give an elaborate explanation. Just like. What's the first thing that comes to mind? Okay. So, first, what is one thing you would say to a parent who just received the diagnosis for their child?

Bailey DeMario: That's hard to answer. Meet with a dietitian. 

Brianna Miluk: There we go. Check. All right. What is your favorite tip for traveling with food allergies? 

Bailey DeMario: Oh, I have so many. Oh my gosh. 

Brianna Miluk: Give like top two then.

Bailey DeMario: Pack a lot of food in your carry on. Never your checked bag. Cause you don't want it to get lost. 

Brianna Miluk: That's such a good, good, great tip. Yeah. You do not want that food to get lost wherever you're going. Okay. What is your favorite food allergy or FPIES friendly recipe you've come across? 

Bailey DeMario: Ooh, pretty much anything with cassava flour. I've never heard of an FPIES kid not being able to have cassava and you can use it for so many things. 

Brianna Miluk: Okay, good to know. All right, last one. What is one thing you want clinicians working with children with FPIES to know?

Bailey DeMario: Listen to the people sitting in front of you and make sure you actually hear what they're saying. 

Brianna Miluk: I love that. Yeah. Listen to the story. Every patient has a story and that is majority of what that diagnosis. That's how you're going to get to that diagnosis. So awesome. Okay. So just a couple of closing thoughts.

You know, I thank you so much Bailey for all your time today for sharing your story, your experiences as both a you know, professional and as a parent of a child with FPIES. So yeah. Tell me, where can people learn more about this? And then also where can people find you? Obviously you mentioned your Instagram briefly but what is your Instagram? Where can people find you? And where can they learn more about this topic? 

Bailey DeMario: Yeah. My, my Instagram is @fpies_speechie_mama. And it's, I use it sometimes with a lot of intensity and sometimes not at all. And everywhere in between. 

Brianna Miluk: And you're allowed to do whatever you want. 

Bailey DeMario: I share a lot of, I share a lot of information about like FPIES as a whole and also just like our day to day, like I have lots of travel tips on there. Go, go watch the traveling with food allergies REEL and that can give you some good ideas. But yeah, I just, I share a lot about like just things that make our life easier and also things like from a feeding therapy perspective that parents might not like be as aware of because they're not in this world.

But, you know, I thankfully am. So, I share, I share some insight from that perspective as well. And then as far as like learning more about FPIES in general, the FPIES foundation is really great. And then there's also IFPIES, which is like the international FPIES group. And both of those groups have really great websites with like lots and lots and lots of free resources for families and for like educators and clinicians as well. You know, they have lots of handouts and things like that, that give more information about F pies. They have things like ER letters that you can keep on hand. So like, cause a lot of medical providers don't know what FPIES is so you want to, you want a letter in case your kid needs to go to the ER saying like, Hey, this is what this this condition causes and you know, they just have, they just have tons of resources, like little fact sheets, things like that, that can help spread information. And then like they both, they both obviously have websites and they also are both on social media, Facebook, Instagram, things like that.

So those are two great resources. And then also one more, that's not like, Directly related to FPIES, but I think it's worth mentioning because of how much like can be really challenging as far as navigating food allergies and breastfeeding. There's another Instagram called free to feed. And I. 

Brianna Miluk: I love that page too.

Bailey DeMario: Yeah. I was, that's one of those things I, gosh, man, if I, if I could have seen anything earlier on in my, in my experience, I would have loved to have seen that. It was, I was like way late to the party before I learned that, that they existed, but they provide a lot of really, really great science-based information about navigating food allergies and eliminations.

And they have like consults you can schedule and things like that. I've never had any personal experience with that, but just seeing the information that they provide through their social media platforms and like looking at their websites and, you know, they have like a, like a poop chart that like with like real examples of diapers and it's that's a that's a great organization for getting some support if you are trying to navigate breastfeeding and food allergies or even just food allergies in general. I highly recommend checking them out. 

Brianna Miluk: Awesome. Thank you so much. And for anybody listening or watching, we are going to have I'll have all of that link down in the show notes and the caption so that you can be sure to follow Bailey and then follow along with those other pages as well if you want to learn more.

So, thank you so much. I appreciate you. I feel like I could talk for another like three hours on the topic. But. We got to go. We got to call it at some point, right? Like how it has to go, but. 

Bailey DeMario: I could talk about this all day. 

Brianna Miluk: I just could talk to you all day. This has been so fun. Well, thank you so much. And I think, you know, I just want to like reflect again, the fact that you went through so much of that journey while in graduate school, just like round of applause because wow I was doing nothing but taking care of me during graduate school and I struggled.

So. Just amazing. And to all the FPIES parents out there. You know, we hear you. We see you. It's tough. It's tough. But it does get better. It does get better. So, thank you so much Bailey for, for talking today. I appreciate you so much. And we'll be in touch. I'm sure. 

Bailey DeMario: Thank you for having me and for talking about FPIES. Speaking on behalf of all FPIES family. We love to see people talking about it because it's not talked about enough. 

Brianna Miluk: No, it isn't. 

Bailey DeMario: I really appreciate you taking the time to make a space for this conversation. 

Brianna Miluk: Yeah, of course. Thanks for tuning in to The Feeding Pod this week. If you enjoyed today's episode, please don't hesitate to share this podcast with your friends and colleagues and leave us a five-star review wherever you're listening from.

If you're interested in learning more about pediatric feeding and swallowing, be sure to follow Bri, me, on Instagram @PediatricFeedingSLP, or check out my website where you can get access to more courses and information, www. pediatricfeedingslp. com. Again, thanks for being here and listening to my ramblings, and I hope you'll keep listening. Until next time, cheers.

  

• The FPIES Foundation: https://fpiesfoundation.org/
• I-FPIES: https://www.fpies.org/
• Free to Feed: https://www.instagram.com/free.to.feed/?hl=en
• Front Page - International FPIES Association