Understanding FPIES with iFPIES Founder Fallon Schultz

Transcript Disclaimer:
This transcript was generated using AI software from the original podcast audio and may contain errors, omissions, or minor inaccuracies. It has been lightly edited for readability. Please refer to the full podcast episode for the most accurate representation of the conversation.

Fallon Schultz, MSW, LCSW 0:00

I knew in my gut something was very wrong and it wasn't until I fed my son one night and he was crying and I was just exhausted. I was just so beaten down and exhausted and I wasn't functioning well myself. And I put him in his crib and he was crying and then all of a sudden he stopped crying completely. And I went and found him buried in like a pool of vomit, like literally vomit over his head and he was under the vomit. And that was when I just knew this is dangerous now that there's a problem.

Amanda Whitehouse, PhD 0:40

Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence..

Amanda Whitehouse, PhD 1:01

Welcome back to Don't Feed The Fear on this special Monday episode so that we could celebrate May 4th National FPIES Day with FPIES mom and the founder of iFPIES, Fallon Schultz. She shares both her personal story and the path that led her to create an entire organization dedicated to supporting families impacted by FPIES. She started out on this journey as a young FPIES mom who needed answers, couldn't find them, so she carved a path in a way that I find amazing and inspiring. In this episode, we talk about what FPIES actually is, how it differs from IgE mediated food allergies, the different types and presentations, Fallon's own experiences with it, how her role as a licensed therapist with an MSW and LCSW guides her work and some of the resources that she has created and the other powerful work that Fallon and her team have done through iFPIES to create resources, education, and community for patients and families who often feel overlooked. This episode is going to give you both information and validation, whether you're navigating FPIES yourself, supporting someone who is, or simply trying to better understand the wider evolving landscape of food allergies.

Amanda Whitehouse, PhD 2:13

Fallon, thank you so much for being here on the Don't Feed The Fear Podcast. It took us a while to work it out, and I'm glad we finally made it happen.

Fallon Schultz, MSW, LCSW 2:19

We did. Thank you for having me. I'm really excited to be here. I've been watching you do all the rockstar things from afar, so I feel special to be asked to be on the podcast. Thank you.

Amanda Whitehouse, PhD 2:29

Yeah, I mean I asked you like, it was almost a year ago, but you've been busy yourself. You have a new podcast and many other things that you've been doing that I don't know a full fit into one episode, but I feel honored to have you.

Fallon Schultz, MSW, LCSW 2:42

Oh, thank you. I'm really, like I said, I'm really happy to be here.

Amanda Whitehouse, PhD 2:45

Good. I'm happy to know you. Let's start. For those who don't know you give them a little bit about your background and how you got into doing what you're doing. Like most of us Mom life pulled you right in,

Fallon Schultz, MSW, LCSW 2:54

Totally. Yeah. Yeah. The labor of love and in all of its forms, so I'm the founder and CEO of the International FPIES Association. I started the organization in 2010 after two years of seeking a diagnosis for my soon to be 18-year-old son, Landon. And those were the hard times because for two years we went from doctor to doctor to emergency department and my son was reacting to multiple foods. We were being dismissed that it couldn't be a food allergy because there was no hives, there was no shortness of breath. There was, no anaphylaxis. And the things that we were told back then were in, in retrospect looking back, are a bit astonishing, right? You're feeding the baby too fast or it's constant viruses. And I knew in my gut something was very wrong and it wasn't until I fed my son one night and he was crying and I was just exhausted. I was just so beaten down and exhausted and I wasn't functioning well myself.

And I put him in his crib and he was crying and then all of a sudden he stopped crying completely. And I went and found him buried in like a pool of vomit, like literally vomit over his head and he was under the vomit. And that was when I just knew this is dangerous now that there's a problem.

So our insurance company wouldn't allow us to go to the Children's Hospital of Philadelphia. The only thing I could find on the internet that was even remotely similar to the symptoms that he was presenting with was eosinophilic esophagitis and they had a clinic. So I paid out of pocket to have my son seen. And that was the moment that everything in our lives changed where we saw gastroenterology. And again, FPIES is treated by allergy, not gastroenterology. And the gastroenterologist still didn't understand what was going on, but he sat down and he held my hand and he was like, Miss you're not imagining this. There's something really wrong and I'm gonna help you. And I lost it. I just lost it. This was the first time that I really had the experience as a mother of being validated and I went with an accordion folder of pictures and pictures of diapers and videos of him vomiting because I was gaslit so much and was told that I was imagining this, that I almost felt I had to prove my own sanity and my own reality.

And so a very long opening story short it was when we ended up in allergy that they told us that he had FPIES. And I remember asking, for information, there really wasn't any, I was told that maybe, he was one in maybe a thousand kids in the country at that time who had it. There was no treatment. There was no diagnostic, there was no way to sort out which foods would cause the issues. And I, I was not going to accept that to be my son's reality. So during a hospitalization, after trialing sweet potato, and he was hospitalized for days I asked to meet with their philanthropy department and asked to create a research fund. And we created a, a research fund for FPIES specifically that grew into very quickly a national nonprofit. And now we are international and have representation on every single continent in the world.

There was a pivotal moment in this where I remember being in the hospital and saying, if someone could tell me what is wrong with my son, I will dedicate my life to helping anyone else that's living with this. And it stands true, for 18 years, almost 18 years, this is what I've been doing. And it's really meaningful because it's personal and it has a human touch behind it. And, a mother's love. And it's not something that I ever intend to stop doing until we, we have a cure.

Amanda Whitehouse, PhD 6:32

Yeah. There was a lot changing and a lot of exciting things happening. And finally some progress where it sounds like there really wasn't much information or much change or much research for a long time

Fallon Schultz, MSW, LCSW 6:41

Sure, yeah.

Amanda Whitehouse, PhD 6:43

Let me realize we haven't talked about FPIES on the show in quite a while, so just in case people aren't familiar, can you back up, tell people what it is, tell people aside from the vomiting, what else are the signs that you saw with Landon or that would indicate it and what it actually is?

Fallon Schultz, MSW, LCSW 6:57

Absolutely. So FPIES stands for Food Protein Induced Enterocolitis syndrome. So it's a syndrome, right? There's three food allergies. It's the third and it's a non IgE mediated Food allergy, meaning it doesn't have an antibody response, an IgE antibody response. We don't see hives, we don't see skin involvement, we don't see shortness of breath. But what we do see. Is there's three phenotype types of FPIES. There's chronic, acute, and atypical. Most patients have acute FPIES, which is eating a food and then delayed onset of profuse projectile vomiting around the two to four hour mark. And that's what makes it so puzzling, right? Because it's not like you eat the food and you have instant symptoms. And the vomiting could be so profuse that 20% of these patients go into hypovolemic shock and require fluid resuscitation and emergency department visits. And I think what's very unique about FPIES is it could be to any food. So we don't have a top nine, right? It could be any food. And what's even more alarming is it's typically staple foods in the diet.

So it's not something that all the time can be very easily avoided. And when those foods do need to be avoided, because there's reactions, it's sometimes very troubling and difficult to find a replacement. So a lot of these babies that have FPIES will develop a lot of nutritional deficiencies. Some of them will proceed into having, the necessitating the need for feeding therapy. So it, it can become quite chronic. In its presentation and its management. And more recently in some of the work that we've done, we've discovered what's called atypical FPIES. That's when a patient reacts to a food. And then they become skin prick positive to that food.

And I'll give you an example. Cow's milk is one of the foods that is well documented in the literature for atypical FPIES. Where that's concerning is there's a risk of conversion to IgE. So we have avoidance as our only real treatment or management. So you're avoiding this food and then when you go to reintroduce it, there's a risk that this can now convert to IgE. I always say that I wish that the two wings of the allergy bird and the IgE side and the non IgE would flap together because there's something in the middle that kind of connects us. And for so long, non-IgE and FPIES in particular has really been dismissed and set aside as, oh, there aren't many patients with this. There aren't many kids.

And I think we missed a lot of opportunities to advance research by having that mentality and that dismissal around it because it's pretty undeniable now that FPIES is here. It's not just pediatric patients. It's adult patients, you have adult onset. We're finding more and more patients that are not outgrowing it, that, have lifelong persistent FPIES. And so we're in a very pivotal moment I think in food allergy. Evolution science research where we really need to be talking together and stop dismissing and trying to quantify and qualify what is a serious issue and what's not. This is serious.

Amanda Whitehouse, PhD 10:03

And to create a whole picture. Obviously these different pieces of the puzzle are connected, and so the more we can work together to understand that, the better everyone will be.

Fallon Schultz, MSW, LCSW 10:12

Yeah, especially for the patients who are at risk of this conversion. I don't think that this is something that's in the dialogue, and I think this is more notable right now, especially with the early introduction guidelines. We had never seen prior to 2017 reports of peanut FPIES. Now what we're seeing when we are looking at multicenter registry cohort data that's soon to be published, the top high risk foods now are egg and peanut, and we never saw that before.

And so it's important, when studies are being done or guidelines and protocols are being written that FY is not being excluded. And it needs to be part of the folds because we're seeing some potential consequences. I'm very fortunate. That I've had the ability to be educated and trained by some of the best, and they've always instilled in me there's no data to support this and we need to look at the data. I'm going to play devil's advocate and go to the other side. We can't say that early introduction is not negatively impacting FPIES, because guess what? You don't have the data either. And one thing that I can say with conviction is the data lags a lived experience and through IFPIES, we've been pretty good forecasters in terms of advocating for the different phenotypes or adult FPIES or conversion. And we're seeing so much peanut FPIES. I'm deeply concerned for our patient population. And so anyone who challenges that and says early introduction is good for everyone or good for patients that fit that risk profile. 65% of our patients have atopic disease. So we are that risk profile. We are that patient.

Amanda Whitehouse, PhD 11:52

Right.

Fallon Schultz, MSW, LCSW 11:53

and I think we need to have more discussions and instead of dismissing us, again, we need to be sitting down and focusing and looking at this in this patient population because we never saw this before.

Amanda Whitehouse, PhD 12:06

Yeah. And if, just in case people aren't following this trend toward early introduction, is what we have discovered reduces a lot of the cases of IgE mediated food allergies, but now those are being introduced earlier than they were before.

Fallon Schultz, MSW, LCSW 12:19

Yes.

Amanda Whitehouse, PhD 12:19

That you're saying, and obviously we need some data, is that it's driving FPIES with these new foods

Fallon Schultz, MSW, LCSW 12:24

What we do know in FPIES, and we learned this when we published the 2017 International Consensus Guidelines, right? And it was great that it was an international guideline because we started to see it that the trigger foods are country specific, but the theme that ran between all of them was that it was first foods of introduction, right? So whatever we're introducing as first foods that's country specific tended to be the higher risk food. So when we look back in the natural history of FPIES, like back in the dark ages, I'm like so old. Back in the day when we used to feed our babies rice cereal as their first food, rice and oat and milk and soy were the top trigger foods. Then five years after that, the dietary trends shifted and it was give your baby like whole foods, and that's when we saw avocado, sweet potato, banana, on the rise.

And now the recommendation for early introduction is to give top nine. And guess what foods we're seeing are like growing into the common triggers for FPIES. So there's something there. I don't know what, I can't stand on a soapbox and say, oh, this is definitely what's happening. But as an advocate, a mother and someone who's in the trenches with the patients and families every single day, I think that, we need to give way more attention to this patient population that may have a vulnerability that was not accounted for or not, evaluated and understand that this is causing a lot of fear in our patient population, a lot of trauma in our patient population because what happens when you fail an FPIES food? Avoidance. What are we being told? Avoiding early, avoiding the top nine or the, the high risk triggers puts you at risk of development of IgE and we just don't have the answers. And for me, as an advocate, it's really frustrating because I don't know what to tell these patients and families. And I'm going to the medical community and saying, please, we need your help. We need to look at the data we need to study this, we need to look so that we can hopefully prevent conversion. And also I always worry like, what happens if a patient thinks that they're going to have an FPIES reaction and they're not prepared for IgE and vice versa?

That's a safety issue. And that's always going to be something I'm not going to be quiet about.

Amanda Whitehouse, PhD 14:40

Yeah. I don't know, but I assume because there's still so much of a lack of like integration as you're saying, is that something that's in practice guidelines to, to prescribe it? I know people don't like to give epi prescriptions when it's not already a documented food allergy, but. It seems like a no brainer to have it on hand given that risk.

Fallon Schultz, MSW, LCSW 15:00

It's some, it's again, it's an evolving science, right? This is an evolving presentation that maybe was not accounted for. I think we saw this in the literature back in the dark ages. We saw this with cow milk. Now the question is are we going to see the same atypical presentation with peanut and egg? We just don't know. And I think you're hitting the nail on the head, the guidelines need to be changed for FPIES and we're working on a revision. We've been working on it for the last three years. The guidelines were also written at the same exact time, published at the same exact time as early introduction in 2017. So it seems like we're in the right window to be modifying or updating what we previously knew, which was based a lot on case reports because we didn't have data. We have data now. And so the, iFPIES medical advisory board is really working very hard to do a revision to those guidelines to hopefully be able to answer those questions because again, we just don't know.

Amanda Whitehouse, PhD 15:56

Yeah. And sadly, where my brain is taking this is will that result in FPIES being taken more seriously because of what you touched on earlier, that people think IgE mediated food allergies and anaphylaxis are life threatening, but some of these other conditions like FPIES and EOE are not.

Fallon Schultz, MSW, LCSW 16:11

We have a tele-coaching platform and I was speaking to a parent who was a pediatric ICU nurse and who sees anaphylaxis and is around allergy quite often. And she's deeply traumatized from the FPIES reaction. And for her, she was sharing like, I think this is. It's just watching that type of vomiting and when it doesn't stop, you don't know what's going to happen. It's very scary and I'll even piggyback off of some of the reports that we get from the clinicians. We have clinicians that are terrified to do these challenges. They come to our organization, they're like, I am not touching one of those kids. No way. I'm not doing an oral food challenge. And that's not to minimize the severity. And the potential risks and anaphylaxis, and I hate when we do this comparison dance, it drives me nuts. Not about who has it worse, it's a matter of, hey, these patients are at risk in how do we manage this and how do we help everyone that has food allergy instead of making these comparisons.

It's concerning to me, and I don't think we should minimize people's experiences. It's not a small population of patients, and there used to be, oh, there are pediatric patients that outgrow it. By the time they're three we've debunked that, right? We know that's not the case. So I hope that not only will awareness improve, but appreciation for what these patients and these parents and these adults go through because when I speak to the adult patients they vomit so profusely. They're disoriented, they see spots, their ears are ringing. They're not present, they're not oriented times, four, right? They're not here. And I think that tells us a lot of, we need to, again, stop minimizing and rationalizing this.

Amanda Whitehouse, PhD 17:55

Absolutely. I'm, I'm on board with this and I love you're throwing therapist language in there and you didn't mention when you're giving your background that you're a trained therapist. I would love for you to tell everybody about Loni's Lounge because it's such a beautiful program. It's so cool how it came to be, and I want to make sure everybody listening knows that it's out there as a resource for them.

Fallon Schultz, MSW, LCSW 18:12

It's a special one. It's a very special program. I wish back in the day we had something like this. So Loni's Lounge is completely free. It's our tele-coaching platform. I am your coach. And we will be expanding our coaches as well, but it's a place for patients, families, and even I have some clinicians that signed up for it, which is pretty cool. To not only gain access to credible information. A lot of what I do on Loni's lounge is I debunk misinformation on FPIES, right? And it's well intended. You go into different forums or groups and you're looking for information that maybe you're not getting from your clinician or you don't have access to a clinician, but a lot of the advice is coming from personal experiences or misinterpreting kind of information. It's well intended, but it can really cause a lot of harm.

And so number one, it's debunking all of that. Number two, making sure that patients and families have credible information and educational resources, but there's something about talking to someone who gets it, someone who lives it, and someone who can validate the experience of, one of the first questions I ask my patients and families that come to the platform is, has this been traumatizing for you? And that question opens the floodgates. And these parents just start crying. And I love that we can create a safe space. For a parent to cry like that because I think a lot of the time there's fear of showing that emotion in a medical appointment or around other family members because it could be perceived as weakness or you're not coping well or this isn't, oh my gosh, this isn't as bad as blah, blah, blah, blah, blah, blah.

Amanda Whitehouse, PhD 19:56

Yeah. And everybody already thinks we're unhinged and overprotective and reacting and keep going down the list,

Fallon Schultz, MSW, LCSW 20:02

And you know what I say, let's go food shopping. Go find all the food, okay? And do that during your, your day-to-day schedule, and then go home and cook all of those meals and make sure you don't make a mistake and live in the over-functioning and hypervigilant state that we're in because. I see so many families that are so afraid of making a mistake or I'm going to harm my child, or this is my fault, or I've caused this. There's a lot of deep emotion in this, and so Loni's Lounge is there to provide the practical management and the support and really get into the reality of living with this because a lot of the times when we're thinking of food introduction, some of this has become so over medicalized that we, like the patients and families I work with have lost sight of functional eating or healthy eating. And I work with them to make this fun in your home, creative and exciting, and give them ideas of oh, you can take beans and plant them in your garden and turn them into lollipops. And that's an FPIES bean. And like just turning the tables around.

And it's come from our experience, it's come from working with experts. It's come from talking to families all over the globe. I've spoken to thousands of families over the years. And I'm so proud that we're able to offer that. And it came from a benevolent, incredible allergist, Dr. Allan Stillerman, who I've known for 15 years, and I met him at the American Academy of Allergy, Asthma and Immunology Conference and every year he would come to the booth and talk to me. And I always felt like he was like my biggest fan, like he would just say keep doing what you're doing. And he would ask the questions and I would connect him with the experts. And his wife Loni had fallen ill with cancer. And he took a sabbatical. He and his late wife were very much in love, beautiful couple. And during that time, he was so worried about his FPIES patients. And he said, please, is there any way you can provide them support? And I said, Dr. Stillerman, I got you covered. And so for a year, I gave my phone number out. I would talk to these families, I would help them. And he, Dr. Stillerman, knew I always wanted to have a tele-coaching platform. It was just like a dream because I felt that was, that really is the missing piece here. Like families need a support, they need a cheerleader, they need a champion, they need someone to show them the other side of this. And sadly Loni passed away. And Dr. Stillerman came to me and said that he wanted to fund this platform, and I couldn't think of anyone better to name it after. I think that they are a couple that exudes everything that this platform stands for. It's love, it's passion, it's compassion, it's kindness, it's gentleness, it's awareness that's really what I saw through their relationship. And so I wanted to honor her in this way.

Amanda Whitehouse, PhD 23:01

Yeah, it's beautiful. I love the story and it's tragic and it's heartwarming and touching and it's so great that something like that exists because I think when people are so isolated, it makes every aspect of living with that condition just

Fallon Schultz, MSW, LCSW 23:14

Yeah.

Amanda Whitehouse, PhD 23:14

infinitely worse than when they have connections.

Fallon Schultz, MSW, LCSW 23:16

Yeah, and I hope more patients and families will utilize the resource, right? Like it's free. Some of the things that I help with is I can actually get appointments for you to see experts. I could bridge your care. I can help you if you need a registered dietician, if you need a feeding specialist. Sometimes we go over publications and I help make sense of what the literature is saying, because sometimes there, it could be misinterpreted. Live shopping, we'll do Instacart shopping a lot of the times. These families, again, like the way that we teach label reading in IgE, immediate food allergies is not the same for FPIES, right? So we'll find products together, we'll shop together. I will live cook with you. I will show you that anything that you have to avoid that is a fail, we immediately find a replacement. How do we replace that food? How do we replace that function? And then how do we make it fun? Like I want people to know, and I say this I say this as a mother of a child who had 32, 32 trigger foods. There were more times he was starving than not.

Amanda Whitehouse, PhD 24:24

Okay.

Fallon Schultz, MSW, LCSW 24:25

There were more times where we didn't have food than we did. And if if you listen to the podcast with my son, like he's a, he lives a very full happy life. And I want people to know that you can do that. You can manage this, you can thrive, you can have very special moments. And it's just the way that we phrase it and the way that we look at it and give them the tools to do

Amanda Whitehouse, PhD 24:47

And you mentioned earlier that one of the most valuable parts of that is showing people the other side, and your son has, it sounds been getting more and more involved. And you have the podcast now. So talk about what that's been like and tell everybody like, he sounds like he's doing great.

Fallon Schultz, MSW, LCSW 25:01

Geez. It's like a, I always have to be careful when I talk about Landon, so I'm going to start crying, right? It's like the, the personal touch point. But, I think anyone who's known us personally knows that Landon went through hell. I, and I mean that like legit, legitimate hell, he had it very hard. And it took a very long time for us to be able to build a safe diet. But his resilience and who he is, he has this incredible ability to be objectively open, poised, and he can quantify things like what's really important and what's not. And I think that comes from living in the hospital and growing up around very sick children. And there's a silver lining to everything. But if you met my son, you would never in a million years ever suspect that this child like grew up with the children who as we called it, used to call it the penthouse suite, Children's Hospital of Philadelphia. He'd be throwing up, I'd be like, let's go to the penthouse. We pack the bags up and go.

He's a three sport athlete, he's a straight A student, he's going to college. And we have been able to tick off so many of these previously failed foods. We've had to do a couple rounds of them, like just in the last two weeks he's passed lemon. He's passed orange. He just did mussel like, actually I could say it out loud today. He passed mussels today. So we're going to celebrate tomorrow and we're Italian, we're going to make zuppa di pesce. It's going to be really awesome. But he's doing exceptionally well. I'm not ever suggesting that everyone has to think like I do. I had to teach Landon how to live in a world that was not going to stop and cater to him. And that's a hard reality that I think it's hard to grasp your head around. Like you're sending your little boy or your soon to be college student out into the real world. And the general population is not going to change to accommodate him.

So I had to teach him how to manage a world like that. We travel to a remote island. We're, we have, we're moving actually to Florida soon in The Bahamas. I've never held him back. I've allowed him to experience life and learn through the process and give tools and problem solve to show him you, you have no limits. Your only limit is yourself. And if there is an obstacle, we're going to find a way around it. We're going to find a way to challenge it. We're going to find a way to move it out of the way. And I think he really understands that and that's very much how he lives his life, like he's very determined.

Amanda Whitehouse, PhD 27:43

Yeah. He seems like an amazing kid because he is got an amazing mom. I just wanna acknowledge too, he wasn't the only one who went through hell. I'm, I can't imagine what it would've been like for you as a mom with a kiddo that tiny, going through that and trying to figure out what it was and not getting answers and seeing those symptoms.

Fallon Schultz, MSW, LCSW 27:59

Yeah, the person today is not the person that existed back then.

Amanda Whitehouse, PhD 28:05

Right.

Fallon Schultz, MSW, LCSW 28:06

And I'm so glad that you brought that up because I think sometimes. People can see me and be like, oh, she's got it all together. Oh, she has these resilience skills. I can't tell you how many times I would hide in the bathroom, hysterically crying. When he was little, I thought. I shouldn't be a mom. I don't know how to feed my child. There's a lot of PTSD involved in it. There was a lot of trauma involved in it. It affected my health too because I couldn't take care of myself. I was taking care of a child that couldn't eat and had to keep him alive and growing and in and out of the hospital and losing jobs and taking new jobs and, that's the reality of this. So I don't pretend at all that I have it all together. I don't. But I think it's really crucial that you have that awareness and appreciation because we feel this way, because we love so deeply and we care.

Amanda Whitehouse, PhD 29:03

Okay.

Fallon Schultz, MSW, LCSW 29:04

I have so many parents that come to me and I always end the appointments with them celebrating something about them and how proud they should be of themselves because this is not easy. It's not. And anyone who says that it is is, I don't know if there's denial going on or like a lack of awareness. This is not easy.

Amanda Whitehouse, PhD 29:24

I think there's just so much ignorance with all of these conditions. I don't think most people even still know what it is outside of the food allergy community. Do you?

Fallon Schultz, MSW, LCSW 29:33

You know what's interesting? It's a great question because I remember when my son was diagnosed, I knew no one with FPIES and now I have neighbors and family members and I don't know if it's that they're getting diagnosed or that the prevalence is increasing. We don't know that, but what's interesting is we do have food allergy quality of life data that looks at domains in IgE-mediated food allergy and compares it to FPIES, and the reports show significantly higher elevations in the FPIES patients. Now that could be because it's better managed. There's more awareness. People understand anaphylaxis. That's a component of it, right? It's really challenging because not only is the awareness not there, but the tools and the resources are not there either. So you feel like you are on this little tiny island within an island, right? FPIES patients are marginalized within their own food allergy community and that, that's hard. It's really hard.

Amanda Whitehouse, PhD 30:39

Yeah. And I know you've been fighting really hard to change that. I want to make sure I leave some time for you to share.. What are some of the big accomplishments? I know Loni's Lounge was like a huge milestone for you, but tell me more because I know there've been other big things that you've accomplished.

Fallon Schultz, MSW, LCSW 30:57

We I first have to give massive amounts of credit to our national and international medical advisory board, and I can't thank them enough for taking a chance on me on iFPIES and this grandiose vision that I had and educating me and cultivating so I, I could understand both worlds, right? So everything that we do is always two-pronged. So if we put something into play for the patients and families like Loni's Lounge, we couple that with a program for clinicians. So one of the new things that we are launching is the iFPIES Global Clinical Consortium. We recognize that at most of the societal and academic Meetings. There are so few talks on FPIES and we've been submitting proposals and I'm literally, I put a flag on the moon so everybody knew that FPIES existed. I have my own frustrations and there's this massive need within the medical community and it's expressed to our organization from pediatricians, adult family medicine, internal medicine, gastroenterologists, and even like allied health providers, emergency departments to have access to information. So we created this global consortium. It has our FPIES journal club. It has a section for all of the individual, all of the clinicians around the globe that conduct oral food challenges. It has a listserv. They can have kind of internal discussions based on the different topics. Every scholarly publication is placed in there. And then we reached out personally to the first author for a summary. And so it's a one stop shop for clinicians to come together and communicate network gain access to the experts, and then trickle the information down. And so what's cool is we can take what we're learning through Loni's Lounge and funnel that information into the consortium, and then we can take what we're learning from the consortium and funnel that into Loni's Lounge. So those are two massive platforms and programs that we currently have. May 4th is National FPIES Day. So to have a congressionally recognized national awareness day is a big deal for us. We wrote the consensus guidelines. We wrote the ICD 10 code. We just launched a Meet the Researcher series, which, okay, so we're nowhere near where IgE is in research, but we know that we're starting to get to that place. So we want to make our patients and families who are potential participants in studies, like informed participants. Whenever there is a study, we invite the researcher to speak directly with the patients and families on a webinar and do a q and a. And we've been doing them and they are awesome. And it's such a great and unique opportunity for patients and families to have direct access with an expert. And our group is personable. Like we're very down to earth and all of the clinicians are just full of heart and passion and real people, so it's very interactive. We launched our podcast, reAllergies, and I personally chose that name because I'm like, let's get real with this. And we have some really thought provoking and provocative discussions on the reality of living this. We're not mincing our words and I'm sure you could tell I don't mince my words.

Amanda Whitehouse, PhD 34:04

Right.

Fallon Schultz, MSW, LCSW 34:05

we are working to expand access for Lonnie's Lounge. So one of the things that we're looking into is to be able to have a medical translator so we can work on providing the service, all over the world, depending on the different language barriers. There's a lot. There's just so much going on.

Amanda Whitehouse, PhD 34:22

I want to pull back one thing you mentioned. I don't know if a lot of people will know what an ICD 10 code is and what, but I know that must have been huge.

Fallon Schultz, MSW, LCSW 34:31

Yeah, it's, I'll tell you a funny story about that. All right. We'll have a little laugh. When I started the organization, Dr. Jonathan Spergel at the Children's Hospital of Philadelphia who's the chief, he's the chief of Allergy. He was the first to really rally behind me. And I remember like marching into his office and saying, Hey, I'm Fallon Schultz. I want to start an organization. And it was a great little meeting because he was like, okay, I got you. I'm going to rally behind you. And so I remember when I said to him like, the first initiative is I want to, I want us to write an ICD 10 code. And he like, chuckled at me, right? And he was like, that will never happen. And I'm like, no, it's going to happen. We're going to make it happen. And I had to learn the ropes, right? Who knows how to write an ICD 10 code, especially a mother. So did the research, found the contacts, created the system that we needed, had the medical writers, like everybody's doing their little pieces. And then we had to go down to Maryland Dr. Anna Nowak, and I went down and did a presentation. And then there was a public comment period, and this is where it's funny. So Dr. Spergel was like, don't hold your breath because this doesn't happen and it's not going to happen quickly if it happens at all. And I'm like, no, it's going to happen. So they opened up the public comment period. I had everyone and their mother calling the CDC so much so that the CDC called me and said, please stop having people call.

Amanda Whitehouse, PhD 35:51

Message received.

Fallon Schultz, MSW, LCSW 35:53

we got it. And I'll never ever forget the day that I got the phone call and it was the CDC and they said, the ICD 10 code has been awarded. And I called Dr. Spergel on the phone and I said are you sitting down? And he is what? What? I said. We have an official ICD 10 code and he was yelling on the, and if Dr. Spergel, that's not his style, right? He's yelling on the phone. He's so excited and so passionate about it. And he was like, how did how has this never happened? And it was just this, I think it was the, that was the pivotal moment in FPIES history. And I'll say this from a personal place that was like. We're real. Here we are. You can't deny us anymore. This is it. This is for every person living with this. And it gave the validation and it placed it in the medical realm. And it's one of the things that I'm most proud of for the organization because it's a huge success.

Amanda Whitehouse, PhD 36:51

Yeah. That's amazing. Again, I have to applaud you, and I know you had a lot of help and you like to recognize everybody, but who knows even how to begin doing these things, and

Fallon Schultz, MSW, LCSW 36:59

I didn't know.

Amanda Whitehouse, PhD 37:00

it out along the way, so it's really impressive.

Fallon Schultz, MSW, LCSW 37:04

I didn't know. And it, again it's that fire, right? It's that this could be better and I may not know how to do it, but I'll learn and I'll figure it out. And I think too, like any person who's out there that's living with FPIES, i'm listening to everything you are telling us. I am paying attention to your experiences. I am taking these experiences and voicing it to the medical community. It is not falling on deaf ears. As a matter of fact, sometimes I think the medical community wants me to shut up. But I'm not going to. And it's important. It's important work. I don't think that it's fair for any patient, family, whether pediatric, adult, to suffer like this when we can do so much better. And we're getting there. We're getting there, we're getting closer and, I think a, another pivotal moment was, so we have no funding for FPIES And I personally went to the NIH now, that's also something that never happens, right? Like the NIH is not just oh, hey mom, want to come in and take a tour and sit down with us. And I was very fortunate that doctors Daniel Rotrosen and Alkis Togias, who are the Division Chiefs of the National Institute of Allergy and Infectious Disease. Welcomed me and I sat down and I laid it all out to them and I said, look, you have the consortium, the Center of Food Allergy Research(COFAR) yet you're not even representing FPIES. How can we partner with you to elevate this? How can we get to a police where we can be in consideration for funding? And they asked me what ideas I had and I said I wish we could have a multidisciplinary, not just allergy and immunology, but multiple disciplines coming, sitting together, putting the minds together and developing some sort of research blueprint. And and I remember Dr. Togias said to me, he was like, okay what do you want? And I said I'm going to put us on the rocket on the moon. Don't ask me that. And he was like, put us on the moon. What do you want? And I asked for everything that I wanted and I thought that would be helpful. And they were like, we're in.

We are doing it and we now have a publication that is an FPIES research blueprint. It's a, a manuscript that was published and I think one of the most beautiful things that came out of it is I was asked to author a piece in this manuscript. And it was at the very end of the manuscript, like usually the patient parent perspective is. And then the NIH opened the whole manuscript. They moved it from the last to the first. And I think that speaks volumes to the type of work we're doing behind the scenes as well as how meaningful these relationships are and what we're cultivating in this space to be able to create the avenues for change. And they have been so supportive of everything that we have been looking to do. And again, that's another thing that's unheard of, right? You don't really see a lot of advocacy organizations working directly with NIAID or the NIH and bringing them into the fold and having these discussions to improve care. So it's beautiful. There's a lot of beautiful things going on. I feel very lucky.

Amanda Whitehouse, PhD 40:14

That's amazing. I feel thankful for you and for all the people who've been supporting you. What's next? What's the next, what's beyond the moon?

Fallon Schultz, MSW, LCSW 40:21

Sky's the limit. I would say some of the things that are on my to-do list having some discussions on potentially developing an auto-injector of ondansetron, which is the medication that we use because we have data that shows that IM, or intramuscular administration is most effective. So I've been sourcing and going to device companies myself bwecause I'm like, I'm not going to wait for you, I'll just come find you. I think that the biggest thing that we need as a biomarker, we, we need some sort of a way to determine if a food is safe or not. And so that's going to be a very big focus of our organization. The next piece is, sharing some of the multi registry data so that we can really start qualifying and quantifying FPIES as well as this early introduction piece, potential conversion, all of those different pieces. And I really just want to grow Loni's Lounge, like I want patients and families all over the world to know that they have a space that they can come to and get the support that is it's, this is not to, this is not being said in any way to discredit the medical at all because we need that piece. But there's just something about how do I live with this? And that's what we could teach. It's not just live, like thrive and enjoy your life. So I'd like to see that expand.

Amanda Whitehouse, PhD 41:45

I have no doubt that you'll get there. Tell people where they can find all the things so that they can help you to do that. And Loni's Lounge and the podcast.

Fallon Schultz, MSW, LCSW 41:53

Yeah. Yeah. First and foremost, our website, fpies.org, we tried to make it nice and easy and the menu bar is also very easy. So all of our free programs like Loni's Lounge, the Global Consortium, all of that is under free programs. We have one tab for resources and that's where you can find your emergency action plan. You could find all of the different handouts, like a dining out card that we have. Everything is nice and neat, editable PDFs, so you can print everything from there. And if you are not a member or subscribing to our newsletter, if you scroll down to the bottom of our website, you can subscribe to our e-newsletter. We send one out every single month, so if you want to participate in research, get the e-newsletter if you want to know what programs are happening. You want to know new publications, like it's all buttoned up nice and easy in there. And I hope that anyone who's viewing the podcast will participate on May 4th is, which is our National FPIES Awareness Day. We have the Take a Seat campaign, and you can also see that on the website. And what that means, you get to set like a virtual table. So your child or any patient that has FPIES, any dream scenario that you wish that you can have all of your families and friends around to eat your meal, the meal of your dreams, and invite all of your family and friends to this virtual table. And it's called Take a Seat 4 because of May 4th F pies. And you can invite everyone to participate in this campaign and raise awareness. So I really hope a lot will participate and engage in that because it's cool.

Amanda Whitehouse, PhD 43:22

That's really cool. I'll be sure to share, and I'll put all the links of course to everything, but it's, it sounds like you've made it really easy to find

Fallon Schultz, MSW, LCSW 43:31

Yeah and if anybody ever wants to reach out directly, you can always send us a message at contact@fpies.org. So if you have ideas for the podcast, if you have a wishlist, if you have things that you want us to know, if you want to share your experiences, like I personally read all of the emails, so don't be shy. Reach out, go to contact@fpies.org and know that. Anything that you share with us, you're contributing to the greater good. So it's really important and we value your experience and it's, we care. We genuinely care.

Amanda Whitehouse, PhD 44:03

Yeah, I think anybody who meets you or hears you can tell how much you genuinely care and are invested. So I think that is why you've gotten so far and I think that's why people feel so comfortable just reaching out and yeah, connecting with you. So thanks for doing that here on the podcast. It was so great to have

Fallon Schultz, MSW, LCSW 44:18

Thank you so much for having me, and have a great week.

Amanda Whitehouse, PhD 44:21

I have learned so much from Fallon and her work and her colleagues who are also so passionate about raising these conversations. If you or your child are navigating FPIES, I hope that this episode helped you feel a little bit more informed, a little less alone, and clear on where to look to find the help and the information that you need. Before you go, here are three small action steps that you can take from today's episode Number one. If FPIES is new to you, start just by going to the fpies.org website and learning one or two key things. You don't need to know everything all at once, but the information is waiting there for you as you're ready. Number two, if you have an FPIES diagnosis for yourself or someone in your family and you haven't already downloaded iFPIES' Allergy Action Plan, go find that document on the website. It's an easy PDF to print. It is medically valid and supported by the best experts in this field and will help you if you unfortunately find yourself in moments when you need it. Number three. If you know someone who suspects FPIES or is dealing with it, it would mean so much if you would share this episode with them so that they can find the information too. As always, thanks for spending your time with me and I will talk to you again next week.

45:34

The content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.