Ep. 284: The Latest on FPIES

We’re checking in with the FPIES community to hear what’s new, what’s changing, and what families need to know right now. Joining us is Fallon Schultz, CEO of the International FPIES Association, who’s here to share exciting updates, recent advances, and the incredible work happening behind the scenes. We’ll also take a closer look at their robust resource library—packed with practical tools for patients, caregivers, and healthcare professionals alike.

Resources to keep you in the know:

• International FPIES Association

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Transcript

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Caroline: Welcome to FAACT's Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions,

each episode will explore a specific topic, leaving you with the facts to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice.

Please consult with your personal board-certified allergist or healthcare providers for advice specific to your situation.

Hi everyone, I'm Caroline Moassessi and I am your host for the FAACT Roundtable podcast.

I am a food allergy parent and advocate, and the founder of the Grateful Foodie Blog. And I am FAACT's Vice President of Community Relations.

Before we start today's show, I just want to take a moment to thank the American College of Allergy, Asthma, and Immunology for their kind sponsorship and for their support throughout the years.

We're checking in with the FPIES community to hear what's new, what's changing, and what families need to know right now.

Joining us is Fallon Schultz,

CEO of the International FPIES Association,

who's here to share exciting updates, recent advancements, and the incredible work happening behind the scenes. We'll also take a closer look at their robust resource library packed with practical tools for patients, caregivers and healthcare professionals alike.

Caroline: Welcome back, Fallon, to FAACT's Roundtable Podcast. It has been a minute and so we can't wait to catch up with you.

Fallon: I am very excited to be back and have so many new things to share, so thank you for the opportunity to join you today.

Caroline: You're very welcome. We're excited to catch up with you. Before we jump in, we'd love for our listeners to get to know you a little bit more. If they're new here,

can you share your personal connection to FPIES and then what inspired you to even create the International FPIES Association? That's a big job.

Fallon: Well, I am an 18-year veteran. I would say to FPIES, my son Landon, who will be starting college in the fall.

We're the OGs of FPIs. I would say we lived in the dark ages of FPIES and it took a very long time for him to get a diagnosis.

So back then we didn't have a diagnosis code, we didn't have any formal resources available in terms of identifying the diagnosis and treatment. And he didn't get diagnosed until he was two and those two years were unimaginably brutal.

I didn't know how to feed my son. He was reacting to multiple foods. He was failure to thrive and he was really, really decompensated and was traumatizing, to say the least.

It was a very traumatizing experience for both of us. I always sort of joke and a little playful that iFPIES was born from a sweet potato. I was in the hospital with my son after a sweet potato reaction at the Children's Hospital, Philadelphia (CHOP),

and was very lucky to have their support when they diagnosed him and asked every physician in the room, well, what's. What's the treatment? And they said, we don't have any.

And I said, okay, well, where is there an organization that I can link into? And they said, it doesn't exist. And I remember in that moment thinking and saying out loud that if anyone could tell me what was wrong with my son and how to help him, I would dedicate my entire life to being able to support others that were living with this.

And so in 2010, I. I started first the FPIES United Family Fund, which was a research fund dedicated specifically to CHOIP.

And it grew exponentially and quickly. There was obviously an urgent need to formalize a national nonprofit, and now we are a global advocacy organization. Those are the roots of the organization and where we started.

Caroline: I think that's how all the big changes start.

Caroline: Right.

Caroline: Like, you have this personal experience.

You feel it in your soul and in your brain, and you can see what's needed, and you can see the gap.

And you did.

Fallon: Absolutely. And I think that it grew into far more than I. Than I initially expected.

I didn't realize how many patients and families were out there suffering with this.

And it's become a life's mission for me. It's. It's a vocation. It's something that. I believe this happened to us for a much bigger reason.

And the beautiful thing is, you know, my son had FPIES to 32 foods. I always share with anyone that he's overcome so many of them and that we have a really wonderful life.

You know, he's thriving, and he's doing well.

And I don't think that that would have been possible if we didn't create the organization and also find the right people to work with. And I think that's where my heart really goes out to those who don't have the same experience that we have had that are really in the trenches still and trying to find physicians and trying to gain help and support.

I kind of say this all the time. I don't know if it was better to live in the dark ages when there wasn't any information,

or if it's better to live now when there's so much misinformation. Because there is so much misinformation on FPIES.

Caroline: There is a lot.

Caroline: And you know what?

Caroline: That's what we're going to be digging into. So you know what, let's start by painting the big picture here.

Can you share the mission behind the International FPIES Association and then give our listeners a peek into the kinds of resources and support they're going to find on your website?

Really important, I think for them now to dig in and start to learn about everything that you created and everything that's out there and talk about misinformation, please.

Fallon: Sure. So our mission is to improve the quality of life for pediatric and adult FPIS patients through advocacy, research, support and education.

And so these four pillars are the fundamentals behind our organization and how we work to execute that on our website. We worked really hard to try to streamline access to the information and make it very user friendly.

And so we have different tabs. Like my favorite tab on our website is the Resource tab.

Every bit of information that's printable, PDF or digital form is on there. And that's inclusive of emergency room letters for pediatric patients and adult patients,

FPI's emergency action plan, dining out cards, the FPIES guidelines. All of those pieces are housed in that one area.

And then the second area that I think that I would want to draw attention to is the programs. So we have a lot of free programs and we just launched them at the American Academy of Allergy, Asthma and Immunology Conference in February.

And this is where we really get into the nitty gritty of providing the support. And I think what makes our organization very unique is that we provide support to patients and families, but also to clinicians.

IFPIES has become like a worldwide resource for clinicians as well.

And that positions us to be in a really cool place where the two wings of the bird flap together, where we compare what we're learning from the patients and families and look at what the needs are in the clinical realm and bring it together to have a united front in terms of how we address unmet needs,

or looking at patient outcomes, or looking into research to make sure that as we're moving the needle forward, we're moving it forward in a way that is strategic, methodical, and will give us the quickest and best outcome by collectively joining the voices and the stakeholders together.

So I think that our website is a great resource and we can kind of get into some of the programs if you'd like.

Caroline: Let's dig in a little deeper. To the website. What would you say are like the top three most important resources for someone just exploring FPIES?

Fallon: That is a great question.

So I think first the FPIES emergency action plan which is a brand new document.

What we have found, found over the years is especially when you're approaching daycare or school or college, that we have an anaphylaxis action plan. And oftentimes families are met in the FPIES realm with a lot of resistance because they the training and the awareness is an IgE meat food allergy and not non IgE food allergy.

So families have been rejected from, you know, attending school and daycare and there hasn't been a formal emergency action plan specific to FPIS that has been in place. This is one of the things that we launched at the AAAAI meeting.

It was formalized by leading experts in the fields and it provides the emergency management from the signs and symptoms from a multi system perspective of skin and heart rate and blood pressure and how to, you know, in gastrointestinal reactions all the way down to dosaging of ondansetron, which has really been a pivotal treatment in,

in FPIES and improving the vomiting to shock that occurs in with reactions and gives guidance to both clinicians and caregivers on how to manage an FPIES reaction. So this was a pretty monumental feat for the organization and clinicians to be able to have this tool so we can elevate emergency care.

Because a lot of the times our patients and families will have these reactions. They'll go to emergency departments and they'll be told that they have viruses or they'll be told that you can't vomit from an avocado or there's no such thing as a food allergy to a sweet potato.

And so this was our way to directly address that and provide a resource to ensure that all patients and families have access to appropriate emergency management.

I would say the next piece would be and this is my baby and I'm,

I'm biased. I'm super proud of it.

I wish back in the dark ages that there was a resource where I could talk to another individual,

another parent that was going through FPIES.

So over the years it was my dream to create a free tele coaching platform that was able to provide credible information and evidence based information to patients and families while also softening and addressing the trauma and the anxiety and just the real lived experience of living with FPIES.

I often say that, you know, when we look at FPIES, the acuity of the symptoms that are occurring maybe 5 to 10% of the time. But the chronicity of the management,

which is 90% of the time, is how do you live with this? And we have wonderful literature and fantastic clinicians and researchers, but a lot of the times the recommendations don't translate into the real world.

Like how do you do a food challenge at home and how do you make the food and how do you know what dose and how do you know what a dose is, how do you know what a full serving size is,

how do you pack food, how do you travel, how do you travel with elemental formula? All of these pieces that really are not addressed typically in the, in the clinical space.

So Lonnie's Lounge is the first ever completely free and confidential telecoaching platform to provide the practical management and this and supportive coaching for patients and families. And it's for both pediatric and adults, patients and families.

And we launched this platform a year ago and we have so many,

so many patients and families who are registered. And I think what's so beautiful about it is we're seeing families and patients all over the world.

I am the coach,

so patients and families will have direct access to speak with me.

And I'm here to kind of hand hold them through the process from initial diagnosis all the way to the hopeful outgrowing of this condition. And even if the condition is not outgrown, how to manage it moving forward was really a dream of mine to be able to provide this.

And so that telecoaching platform is available free again to patients and families under our programs tab.

And then the third,

I think to address outside of the patient and family realm would be the launch of our FPI's global clinical consortium.

Too often, and especially through our telecoaching platform, I have patients and families who come to me that don't have access to clinicians that are properly trained in FPIES or have access to, to colleagues that are experts or academic centers.

And so we really took a look at where the unmet needs were from the patient perspective as well as from the clinical. And as I mentioned earlier, our organization has really kind of become a central hub for clinicians to come to, to get information.

And I work tirelessly in the background making connections. Actually just had a phone call yesterday with Australian researchers and patched them in here with other researchers in the States that are looking at adult FPIES.

And I think that that's what's so incredibly cool about my role is that I get to kind of create these collaborations and connections in both realms. But the iFPIES Global Clinical Consortium is going to be a central hub for all things FPIES for clinicians.

It will be offered again free to the clinicians and be multidisciplinary. So whether you're a pediatrician, a gastroenterologist, an adults and family medicine provider, a gastroenterologist, an allergist, an immunologist, a registered dietitian, feeding specialist,

a mental health provider, we have something for everyone in this consortium and it functions like different groups that the clinicians can join.

Some of the groups are scholarly publications or current FPIES research or our quarterly FPIES journal club where we feature a late breaking abstract or a new study that has come out and have the first author or the senior author present the data.

And we have these stimulating question and answer discussions and they've been really impactful in the field. But it's a one stop shop to educate clinicians and to make sure that there's clinical consistency.

Because what we see in our organization is there's so much variability and I think it's because on one end we're working so rapidly in the background to elevate the condition, but sometimes there's a lag in the literature.

So what we see with patients and families,

unless they're getting to an academic center, to a researcher who's collecting the data and actually publishing it, a lot of what we see in the literature is years lagged behind what the actual lived experience is.

And I'm sure we can touch a little bit on this a little bit later, especially with early introduction guidelines, because we're seeing significant concerns in our patient and family population that's not yet reflected in the literature.

And so this is a way to expedite this piece, to bring all of the minds together to educate, to elevate, to raise awareness and to simplify. Because there aren't very many avenues for clinicians to get continuing education in fpies or there aren't very many talks in the societal and academic meetings on FPIs.

So we decided to in house at all and make sure that everyone has access to it and provide a service that is well rounded and that will ultimately improve patient outcomes.

Caroline: Boy, to say a lot has happened in the last few years is just an understatement.

This is incredible.

You have made leaps and bounds with just FPIES and the patient community and the clinicians and the researchers. This is incredible. I mean, this global clinical consortium that's going to move the dial, that's going to change so many things.

Fallon: We really hope so. And it's come from many years of even internally advocating with a lot of our partner organizations and sort of the powers that be to say we really need this.

And so we've decided we just can't wait anymore.

We have to do this ourselves.

And we're very blessed to have an incredible national and international medical advisory board at FPIES that really is led by the leading experts in this space. So we thought it would be really wonderful to give clinicians an opportunity to have direct access to those experts instead of feeling like they're behind a firewall and to get everyone talking together.

And that's what needs to happen. And I know over the 15 years of running this organization,

I can speak with conviction that when we bring everyone together to have these discussions, it has always turned into a very fruitful and positive outcome. You know, there's so many times where I have been met with, well, that's impossible, that'll never happen, like the ICD 10 code or the guidelines or the National Awareness Day.

And no is not an answer to me. Like, if you're going to tell me no, I'm going to tell you yes. We're going to make it a yes.

And I think we've been successful in advocacy with the organization and changing the clinical landscape because we have these strong partnerships in the medical field and we're value and respect our experts and what they are doing.

And I can speak volumes to the passion and the compassion that they have for their patients. So we have the right team.

We're just so blessed that we're able to do the work that we're able to do because of those partnerships.

Caroline: Well, and we've all seen the power of when the clinicians and the researchers come together, like at the AAAAI meeting or the college meeting, these different meetings where you have everyone together and they start exploring and exchanging and then all of a sudd and amazing ideas are born, new research comes together,

the collaboration continues. And so it's just beautiful to see how you've taken that model and put it to FPIES in a way that is reaching across the globe so that we can get all this information moving.

And I mean, just think back to the Dark ages to now, how far you've come, how far the FPIES community's come. It's amazing.

Fallon: Thank you. And I really appreciate that. And I think that you're hitting the nail on the head. I think what you're seeing at Quad AI and what's happening, that's every day for us in the background.

So we're very fortunate that we have this integrated and accessible connection.

And it extends well beyond academic centers and the clinicians on our medical advisory board. I mean, we have formalized partnerships with the FDA, the CDC, and the NIH. I really have to sing the praises of the chief of the National Institute of Allergy and Infectious Diseases, Dr.Alkis Togias. He has been such a champion. And,

you know, I think I shared in our last podcast,

and this was probably around the time that this happened. I mean, I personally marched into the NIH and asked for a meeting and said, hey,

it's time to include FPIES in the consortium for Food Allergy Research, and it's time for us to partner and work together.

And Dr. Togias was the champion behind that, and he believed in it, and he allowed a patient advocate and a mom to come in and share the data that we had and took it very seriously.

And I think that trailblazing, coupled with the open arms that I have been welcomed with in this space, which I know I'm very fortunate to have,

has really led to monumental changes, like the first FPIES manuscript for a multidisciplinary research plan came out of that NIH meeting.

We also were given the first $2.5 million grant to research FPIES in the Infinity Study, that being led by Dr. Anna Nowak Wegrzyn and Mary Grace Baker and Cecilia Barron.

So we really have moved the needle forward, and I think it comes from the credibility and the ability to have solid partnerships with a shared mission, vision and goal.

And so we are seeing a lot of advancements, but with advancements sometimes comes some pitfalls. Right. So as we're moving the needle forward,

we're moving into a landscape of food allergy that is inclusive,

but there's still elements where FPIEs are excluded. I think a great example of that is the early introduction guidelines and the impact that it's having on our patients and families currently.

Caroline: Oh, good. I'm glad you mentioned the early introduction, because I wanted to circle back to that. Can you talk about that?

Fallon: You know, early introduction of top nine is being widely ascribed in pediatric food introduction, and it's got a great deal of science behind it, and it's very valuable. However,

what we are starting to see, which we never saw before early introduction guidelines,

is that our common trigger foods, which are typically first foods of introduction,

are now shifting to top nine, and particularly peanut. We have multicenter registries that have gone and done some retrospective studies to look and see if prior to 2017,

how many patients reported peanut FPIES. And the numbers are pretty Much non existent. The data that we're gathering now is showing that peanut FPIESand egg FPIES are now two of the most common triggers and we never saw that before.

Now obviously we don't know cofactors and risk factors. So it would be difficult to determine if a patient would be at risk for developing peanut FPIs because we don't have those biomarkers and we're still sorting out the pathophysiology.

But I think as an advocate, my concern is that with early introduction,

what happens in FPIES is when you have a reaction, the recommendation is avoidance, prolonged avoidance for 12 to 18 months.

So if a patient is consuming peanut at four to six months and they have an FPIES reaction now, they need to avoid that food for 12 to 18 months. The question that we have is, is that going to put them at risk for conversion to IgE?

Now we have to sit back and wait and see what happens. But we do have data in, in cow milk that that does demonstrate this.

Where patients and families who had children that reacted to cow milk and then had prolonged avoidance,

some of them develop what we call atypical FPIES where through that avoidance period they convert over to an IgE media food allergy.

And I mean, Carolyn, you've seen, and you know, I'm very vocal when I have the opportunity to be around sister organizations and any, you know that the emphasis is always so heavily on IG Mead food allergy.

And we're trying to bring non-IgE and FPIES on par with,

with the same level of appreciation that we see in the medical and research realms. And I think that this is going to be the pivotal moment of we can no longer look at this again as two separate birds.

It's the same bird, two wings that need to fly in unison. And so we have our concerns for patients and families and in the background we're working with the experts to sort this out and see if it's a direct correlation to the early introduction guidelines or has something shifted.

And now that these foods are becoming common triggers, we're in a bit of a conundrum right now. And that's where bringing all of the powers to be to the table to have discussions around this and pulling the data from academic centers that have large cohorts of FPIES patients and IGE allergic patients is going to be really,

really important.

And FPIES has categorically always been kind of pushed to the side. And I think that this is putting a spotlight on the fact that it can't be anymore.

That when studies are being conducted in anaphylactic food allergy, IgE meat food allergy, we need to have our eyes open as well.

And portions of those studies need to be inclusive of FPIES because it's undeniable at this point.

Caroline: This is fascinating. I had no idea about the impact of early introduction, so I'm so glad you brought that up.

And just staying on that note right there, can you talk to listeners a little bit about how does one even get diagnosed with FPIES? Like how does one even know that this might be happening?

Do you see your allergist? What goes on?

Fallon: It's usually a,

unfortunately anxiety provoking experience.

And so it's a diagnosis made on clinical suspicion. We don't have a biomarker or diagnostic test. So oftentimes what happens,

patients have to eat the food. Two hours later they will have the onset of projectile vomiting.

For the acute form or in the chronic form, it's, you know, breast milk reactors or formula reactors with, you know, chronic symptoms that build until removal of the food and then reintroduction and they have an acute reaction.

And so a lot of the times it's a revolving door for patients and families. And this is, this is a great point, right? This is why we're doing the Global Clinical Consortium, because we need emergency department physicians to be educated on this as well.

So that when a patient comes in and says, hey, I ate this food, two hours later they were projectile vomiting. And in that diagnostic algorithm, FPIs could be part of the suspicion.

I mean, obviously it could always be a virus, it could always be food poisoning, but this is a quite a distinct presentation. So the diagnosis is made on clinical suspicion coupled with the major and minor criteria that are within the FPIES guidelines.

And I think that's challenging if you're in an area like sometimes I think of some of our patients that are in rural America that don't have access to academic centers, they really can have a prolonged, prolonged delay in diagnosis and it becomes a self managed condition.

In fact, we have data that was published out of 410 patients and families, 400 reported self managing their FPIES. And I think that's really concerning. Right. Like it just highlights the need to elevate the awareness and to get to a place where we can have a diagnostic and a biomarker.

And that's what we're really hoping to do with these partnerships with Niadina and some of the research studies that are actively happening.

Caroline: Good. Thank you so much. And so just one last question on this area. So if someone is suspecting FPIES, what is that first step you suggest they take?

Fallon: So first and foremost, I want to reassure patients and families that we do have good clinical management, we do have good emergency management, and you're going to be okay. I want to give that reassurance first because there's so much anxiety and trauma involved in this diagnosis.

So that's number one.

Number two, you know, working with your pediatrician, if it's a pediatric patient, for a referral to an allergist, a lot of the times we see patients referred to GI.

And while GI's are great, this, this is a condition that needs to be managed by an allergist because you need access to clinicians who can perform oral food challenges either for a confirmatory diagnosis or for reintroduction that needs to be done safely.

And also, you know, now that we know that we have conversion between FPIES and IgE meat food allergy, we want to make sure that patients have access to appropriate screening tools and testing before they do a reintroduction.

So that's number two.

Number three,

reach out for support.

So @fpies.org we could literally schedule appointments for you with clinicians. We could bridge your care. We can give you all the resources, we can give you some training too, like how to handle emergency management from packing bags and having,

you know, your comfort items,

all those different practical pieces. We can help you to identify different equipment. Like, one of the things I do on Lonnie's lounge is I teach families how to turn breast milk into ice cream or how to turn elemental formulas into ice cream and use it as a base.

Like, there's some really creative and fascinating ways that we can make this an enjoyable and fun experience while also meeting the day to day needs like oral motor development and avoiding feeding aversions and all of those different pieces.

And then if you're an adult with FPIES, I, I really want to give you hope. I know that across the board when I talk to adults, there's this feeling of hopelessness.

There's so much being done in the background on adult FPIES. And we're working to educate internal medicine, we're primary care, we're working to educate gastroenterologists because Most adults with FPIES end up in GI due to the nature of the symptoms, obviously, right?

It's like common sense. They're vomiting, when they have abdominal pain, they're going to gi. We're really working and putting boots on the ground to educate allergists and connect researchers together across the globe.

To study the adults so that we can improve the care.

So I would say those three steps would be the best way to start.

And then as you get connected with the resources. And I will say again, I'm more than happy to speak directly with patients and families of all ages to help you navigate this and also be a sounding board, because I'm a psychotherapist, and when I look at what these families go through,

it's diagnosable. Post traumatic stress disorder.

And I think that having someone that you can speak to,

not someone who could speak to the clinical portion of it, but who can also really get into it with you and share the personal experiences and the stories and validate your experience,

I see all the time when I meet with families on Lonnie's Lounge.

I mean, I'll turn the screen on and we just see each other, and there's tears and there's crying, and it's just this release of, oh, my gosh, I'm talking to somebody who lives this and understands this, and I don't know anyone else in the world that does.

And that could be a very healing and cleansing and restorative process for patients and families. So just know you're not out there alone. You. There's resources. We're here.

We're here to help you every single step of the way.

And you can do this. We can make this not just a manageable experience, but one that is bright and thriving and fun and creative and turn the tables around on the traumatizing experiences you have had into really beautiful moments and triumphs.

Caroline: This is just incredible. Fallon. I don't even know how to explain how I'm feeling, let alone how listeners are feeling,

to learn about a condition that's really tough, but then to hear your voice and your words of hope and promise and watching all these people come together to make this condition so much better and to help people live the lives that they've been meant to live.

So before we say goodbye today, is there anything else you want our listeners to hear from you?

Fallon: Yeah, I. And thank you for those kind words. I. I'm in it with you. I'm one of you.

Our organization represents all of you, and it's real to us. I mean, I.

I could share so many stories. I mean, there were times where I would hide in. In the shower and cry and think that I.

I was failing my son and,

you know, I shouldn't have been a mom and. And I, you know, my son would be better off with another parent. And it really does a number on you. And I think that those are the things that a lot of us keep hidden inside out of fear of voicing it.

And. And to be sitting on a podcast and saying it out loud,

I think demonstrates the level of empowerment and movement of when you have a good team and when you have adequate support, you can say this more freely.

So I think my takeaway is I'm. I'm one of you. I. I live it every single day under my roof with my son. My son has been my greatest teacher.

I think he's one of the most remarkable human beings. I mean, he's. He's gone through 50, 60 food challenges and has gone through prolonged periods of literally starving.

And we've learned a lot in this process,

and so we can help guide you through this. And I just.

I want individuals out there that might be listening to this podcast to know this is very real to us. And we got you. We've got your back.

I would love to meet you, would love to talk to you, would love to help you on this journey. It's helped me heal and manage as well, to get to meet all of these families all over the world and all of these patients all over the world.

So I think that's my takeaway, is I'm one of you and I'm in it with you. It's very personal.

Caroline: Well, thank you so much for what you do, and thank you so much for your time and spending this moment with us today on this podcast. So thank you so much.

Caroline: Before we say goodbye today, we just want to thank the American College of Allergy, Asthma and Immunology one more time for their kind support of FAACT's roundtable podcast.

Thank you for listening to FAACT's roundtable podcast.

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Have a great day and always be

Caroline: kind to one another.