#88 Reflecting on OIT for Three with Sarah Hornung

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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.

Sarah Hornung 0:00

Being able to provide a voice to families of this is what it really looks like. This is what our true lived experience is, being a, a member of a community where you're often misunderstood. So much of the struggle of families with food allergies in public school is that invisible feeling of knowing that you carry this stress day in and day out, and that your kids are carrying it, and nobody really sees. I talked recently to a family here in our district who has a child with a food allergy, and it was around making accommodations in the lunchroom. The person was really struggling with getting the school to understand why the child needed an alternative place to sit for a period of time. And I said, "We have to start looking at that the same way we would look at a sprained ankle or any type of injury where there might be an acute need for us to make a temporary accommodation until this chapter of this child's life passes," right? Until they get over this, whatever this anxious chapter is that's happening. We would never question a child whose parent comes to us and says they've sprained their ankle and they can't participate in phys ed for the next few weeks. We have to start looking at how are we reframing it. And because it's something that's so invisible to people, we don't always see it.

Speaker 1:17

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. Today's guest may sound familiar because she joined us first way back in episode 11 of the show. Everybody loved hearing from her, and I'm so excited to welcome her back to the show. Sarah Hornung is a school district administrator local to me, an educator, and a longtime food allergy friend and advocate. But today we're talking primarily about another role that she knows well, being a food allergy and OIT mom. Sarah has guided three children through oral immunotherapy, giving her a perspective that very few parents can offer. Each child's journey was very unique and this conversation you're about to hear is full of gems that Sarah has learned along the way about treatment, parenting, resilience, and expectations. I know that you'll find encouragement and tremendous wisdom in Sarah's story.

Amanda Whitehouse, PhD 2:24

Sarah, thank you so much for being back on the show. I'm so excited to chat with you again and share more of your story with everybody.

Sarah Hornung 2:30

Thanks, Amanda. I'm really excited to be here, and I can't believe how many episodes you've had since my first one

Amanda Whitehouse, PhD 2:36

I can't... So if anybody is listening and wants to check back in as you hear more of Sarah's story, she was on the podcast way back in December of 2024. It was episode 11. So we're going to recap a little her, of her background here today. In that episode, she was talking more about both her family and managing allergies, and then working as an administrator in the school district here locally, and some changes that she's made there, which is also absolutely worthwhile. She's now working on her doctorate degree and going to carry that work forward into the educational system, so we'll share a little bit about that, too. But the focus of today is that Sarah is OIT mom extraordinaire. I cannot believe what she took on and what she has accomplished with her kids and their allergies. So we're going to talk about that today. So you're laughing at me as I'm, as we're calling you that. No. But it's true. You're amazing.

Sarah Hornung 3:22

So I don't know if I would say extraordinaire, but we do have a lot of experience with OIT because we did it with all three kids simultaneously. So that's something that is unique. Um, I actually remember our allergist saying every time we would go to an appointment, she would have like a, an intern or a fellow or someone with her, and she'd always say, "This is the family I told you about." And, you know, we kind of became this, like, very well-known family in the practice because it was unusual, number one, that all three of the kids had allergies, but also that we were doing OIT for five different foods at the same time. Um, so we were doing cashew, pistachio, egg, and peanut. Or so I guess four, but there were some that were overlapped for both kids.

Amanda Whitehouse, PhD 4:07

Right

Sarah Hornung 4:08

my daughter had to do egg and peanut at the same time. My oldest did egg, and, um, my middle son did cashew and pistachio. So, um, yeah, it was a, it was a lot and it still continues to be a lot of work, but I tell any person who's considering it or thinking about it, that I would do it 100 times again if I could. Um, we have no regrets about pursuing it, and I remember a lot of the fear. You know, your podcast name of Don't Feed the Fear, I had a lot of fear going into it, and now I feel like it's... I can't believe I'm on the other side of that fear and kind of being able to share our story and the success that it brought our family.

Amanda Whitehouse, PhD 4:46

Yeah. Well, I, I hope we can touch on all of that. You have got to be the best person to ask for tips on how to get through that. Because even outside of allergy life, you're just such a... You're so organized, and you're so, like, I don't know how you manage all that you do. But before we go too far into that, let's back up for those who aren't familiar or haven't listened. Just give us an idea of where you were at beforehand with all of the kids' allergies and how you got to that decision-making point.

Sarah Hornung 5:11

Sure. So I, when I s- became an allergy mom, my first child, um, was allergic to egg. It was scary, but manageable. Unfortunately, we had several accidental ingestions with him, and so he had a few really traumatic, experiences with hospitalizations related to his allergy. Overall, once we kind of got the hang of what it meant to be a family with food allergies, and I just think that's important to mention because I think sometimes there's a lot of shame wrapped up in accidental ingestion, and there's a lot of shame in feeling like you've had to use an EpiPen. I think I talked about that the first time you interviewed me, just that feeling of being scared to do it for the first time, but recognizing that it's always the right choice. but we had several struggles with him, but really it became manageable for us. And then my second child, we discovered, had allergies as well. He was allergic to egg, too, but then he outgrew that. But then we discovered, truly it was, I think, a week after he was sort of graduated from being allergic to egg and he had outgrown it, he ate a pistachio for the first time and went into anaphylaxis.

And we really had to reset and discovered that he was not actually free from allergies, that he was just allergic to something that we had not given him yet. And then my daughter came along, and she was allergic to peanut as well. So she was peanut and egg. And that was when it really started to weigh on me as a busy family. My husband and I both worked full-time outside of the home. We had a lot of activities and sports and just a busy young family that it felt like I started to get to this point where I found myself not engaging in social events with family and friends. I started to withdraw a lot because the stress of trying to manage will they eat at this birthday party and what meal will they have at this family dinner became overwhelming to us to the point that I really recognized something would have to change either in our family, whether it be a parent staying home or someone being able to really manage all of that because it did feel like it was getting out of control.

Amanda Whitehouse, PhD 7:20

A lot of people don't have, you know, the support that you did, and that's, it was that tough even with knowing that your family is really supportive. You have friends and neighbors in the community who are so informed and supportive, and it's still that hard

Sarah Hornung 7:32

It still was. We were at a family party with the most supportive friends that we could ever have, who had done everything possible to make sure that our kids felt safe and that they were safe. And, um, my son still wouldn't eat at the party, and that was when I just really had this like breaking point as a mom, recognizing this is not a sustainable way for our family to operate. And I also was so tired of talking about it with everybody. It became this identity that we carried. Like, "Oh, here, here, here they come, the family with food allergies, and we better make sure that we're accommodating them." And it just felt like a lot. And I did. I had so much support, but it still was starting to feel like it was overwhelming. I have to give credit to the school nurse. I work in public education, and a school nurse is often the partner for a family who has allergies. And she was the first person who actually introduced OIT me.

So I remember calling her, and she, must have detected some of the anxiety my voice. I must have been calling her just to talk, whether it be EpiPens or prescriptions or something that might have happened. And she said, "have you ever considered this treatment?" She said, "There are other families in our district who have done this before and see this allergist, and it might be something that you're interested in." And I had never heard of it. I didn't know what it was. It was nothing that our allergist at the time told me existed, which I think is a disservice to allergy families. At this point, I had three kids with allergies, no knowledge of it. and so I made the appointment. I went in. And before I did, I had gone to our existing allergist and said, I'm looking for advice. I think this might be something that our family should consider. This is becoming unmanageable for me from a just safety standpoint, I feel like I can't possibly keep my kids safe in the world." And they kind of laughed at me. They, they were, very dismissive of it. And I will say, it's not for everybody, and I recognize that, and I tell people that disclaimer all the time. It's not for everybody. But I was really disappointed that I was kind of made to feel foolish for even considering it or honestly dangerous. Like, there was a level of, "Are you really going to put your kids in harm's way?" And that was in the back of my mind I started to pursue it.

But I had the appointment with the new allergist, and I will never forget that appointment because I cried. I am a crier. But I walked in um... I'm sorry, I might get emotional talking about this. I walked in and I said... You know, I told our story to her, and she said, "Your kids will be able to eat their allergen one year from now." And I, like, I remember just this weight of the world, is the only way to describe it, like, fell off of me. And she said, "You're going to be okay. Your kids are going be okay. I know what I'm doing. I've been doing this for years, and we're going to get your family in a better place." Um, and she did. And, you know, I think that's, so many ways, like, that's the happy ending to our story, and I, I can share all of the, the chapters that happened in between.

But the moral of it is that she said that to me on the first day and kept that promise, and it was a lot of hard work, but truly, like, my kids are okay. um, we can get into this in a little bit, but one of them is completely not allergic anymore. And it's important to, to medically say I'm not a physician. I'm not an allergist. But the happy ending for that too is went into this thinking, we just want a level of safety, want a level of reducing risk in the world. But we came out of it with a level of safety for two of the kids, and also one of them who is completely no longer has an EpiPen, has been blood tested for several years now with no signs of any type of allergy, which is truly the best case scenario

Amanda Whitehouse, PhD 11:33

That's amazing. I just want to give appreciation to those doctors who are early adopters of these programs and know what families need and are putting themselves out there to provide this for us because it is truly life-changing.

Sarah Hornung 11:46

Our family will forever be grateful to her for bringing, not only bringing OIT to the Buffalo area, but also for just how much she supported us. It's like you're there every two weeks. You're calling them every night if you need them. And when she left to bring the practice to another region of the country, and she told us my son cried in the appointment when she told him that she was leaving because he, at the age of 10 at the time, had this profound gratitude for her because he recognized not only did she create something that kept him safe and, and maintained it with us but she also just always treated him in a way that if he had questions or he had struggles or he had anxiety about it, she had a way with him of just explaining, "You're going to be okay. This is what it is. This is what it's not." And, um, our family will just... We've never had a doctor like that in our life. I don't know if we ever will again, because she truly changed everything about our family

Amanda Whitehouse, PhD 12:46

Yeah. It sounds like the decision-making process was somewhat clear. Is that oversimplified the way you described it? Was it more of a consideration or were you 100% in once you heard about it?

Sarah Hornung 12:57

Well, I'll tell you some of the, the reasons why we were hesitant or maybe some of our reluctance at the time. A big part of it was I really didn't actually understand how it would work, and that was something that I think was a struggle. I actually remember coming to work and saying to my boss, we're going to do this treatment. I might need to take an FMLA leave." Like, I didn't know. I really was just now in hindsight, I like... It's embarrassing that I even had that approach, but that was really I, I didn't know what I didn't know. I was worried about what if the kids need me in the middle of the day? What if they have a reaction 14 hours later and they're at school and I have to leave and I have this demanding career? Like, I don't think I can do it all. And, um, so I, I did think, that was a consideration was can we even handle this? Can we really even fit it into our schedule?

 I think youth sports has always been a big part of our life. I was worried about that because of the period of time when you have that downtime. I didn't know how that would work. We worried about how little my daughter was in particular because the idea that you have that quiet time where you're at rest, I think to me that sounded like it was impossible. Like, how can I possibly make her sit still? I was envisioning like all three of them sitting at the dining room table completely still.

Amanda Whitehouse, PhD 14:15

No.

Sarah Hornung 14:16

Don't move. Nobody move for two hours. in practice, that looked much different. We got to the point where we were comfortable, like, driving places. So it would be, okay, maybe this is we're going do OIT and then we're going to drive to pick up our Instacart order, and we're going to run a couple errands and again, that was much farther down the road when we really knew what to expect and what it looked like. and then I think the other part of it that I, I see this a lot is the cost. We weren't sure what the cost would be. For us it was, I think we paid $500 per food to start, and we were starting with four foods, and one of them we were doing for two kids. I think we paid $2,500 up front to start the process. And that felt like a lot of money for something that we may not find success with, that we may want to change our mind.

So I think that was another reluctance that we had or a decision that we had to overcome. We have wonderful insurance, so our insurance covered those follow-up appointments every two weeks, but that initial decision was a lot. I think those were really the big aspects of it that we had to pause and decide if it would be something that would work. But my husband and I both have always had the mindset of we can we'll figure it out. We can always change our mind. And we had a lot of support from our family. So I remember texting my mom and my sisters and saying like, "I might need you to come over if I have a meeting and it's OIT time. Can you be an extra set of hands? Can you be able to be our, our support system?" And they were. So it was also just being honest with people about what we were doing. I remember telling my friends like, "My life is going to look different for the next year or two because my kids are doing OIT. I'm not going to have a social life So it's just communicating with people about what you need and what it is and asking for support.

 And, and truly with, with my employer, like I said, I s- in a, you know, said I might need to take an FMLA leave because I just didn't even know what I would need. But what I really just needed was an understanding of I'm going to need to go to the doctor every two weeks. I'm going need to leave work. And luckily I have a career that we're, that flexibility is something that I can handle. Just being clear with people about what was really happening in our family.

Amanda Whitehouse, PhD 16:34

Thank you for sharing that because a lot of us do say like, "Oh, it's life-changing. Everything looks so different now." But for people to hear that they're still stuck on the I can't even conceptualize what this would look like, how could it be possible? And it does feel that big. It's not embarrassing that you didn't know when you asked that because I just think people can't even wrap their heads around where do, where would I begin?

Sarah Hornung 16:53

Where does it fit into our life and what are the structures that have to change in our family for that to be even possible?

Amanda Whitehouse, PhD 17:00

Yeah. Well, and that's a good question. You kind of already touched on this, but you did change a lot of the structures, and most of it was temporary. Was it worth it? I mean, it's a big investment, not just the money

Sarah Hornung 17:10

Yeah. I think it like I said, I would do it 100 times again if I could. We had to have boundaries with, with people and with ourselves of what can we say yes to in this chapter of life right now. We definitely spent a lot more time at home when we possibly could. We tried to have as little of a social life as we possibly could, and that, that sounds like it was bad, but it wasn't. It was just saying, "Let's be really thoughtful and intentional about what we say yes to, and how can we protect that time?" Because if you don't protect the time, you won't be able to do it every day. And especially in those first, for us, it was like 18 months before the kids got to their maintenance phase, but those first 18 months, it was every single day.

And so we would have to have weekends where we said, "We just can't do that," or, "We're going to do that at this time, but we've got to go home early to do OIT." And I'm trying to remember, because now it's been a couple years, but I think Dr. Freeman had said to me like, "Feel free to take Christmas Day off." And I was like, "Oh my gosh, that's the only day that we get off," And, and as time went on, I recognized like, things happen. I went into it thinking it has to be perfect. We have to be able to do it every single day. Um, and we would go to some of our updoses and not be able to updose because we weren't as consistent for the last two weeks, and we would just be honest and say, “We missed a few days. We're just not ready to updose this week. We had a lot..." You know, someone got sick, someone had an emergency, life just happened. And we got into that like, okay, we have, this has to, we have to make this work for us, w- like I, a little bit of me was scared that Dr. Freeman would be like, "You failed."

Amanda Whitehouse, PhD 18:49

Kicked out!

Sarah Hornung 18:50

Right? Yeah. "You're kicked out of the program. You didn't, you didn't do it every day." But she was always super supportive of that and understood that we were a real family who had challenges, so

Amanda Whitehouse, PhD 19:00

Um, one thing that I know people will want to ask, and then we'll get into the, like, the day-to-day and how it progressed, but your, you mentioned you're a big hockey family, the kids are very active. I support people and really encourage them even to think and know families who have said, "I'm a soccer kiddo, but for this year I'm going to sit out from the competitive team in order to make this investment for the future." But you were able to make it work for your family, and all the kids still get to do all their things, right?

Sarah Hornung 19:25

They did. We never changed any of our commitments to sports or activities. Again, we had to have sort of these routines and boundaries where the first, I would say six, six to nine months, we were worried about ever doing the dose before a sport, because even though it's a two-hour rest period after, I still had this feeling of like, I don't know, if he takes his dose at 3:00 and he has hockey at 6:00, and hockey's a really physical sport. We're not talking about like baseball or something where you- there's a lot of like standing around or downtime. It's physical. You are you're going really hard the whole time.

So for those first, six to nine months, I would say we only did the dose at night. So it was 7:00 PM was our typical dosing time. I believe that the kind of rule of thumb was like not to do it too close to bedtime. Like 8:30 was sort of our cutoff but 7:00 PM was our regular routine. The other part of that like misunderstanding that I had about the rest period where I thought everyone had to sit at the table and not move, is I didn't realize... at one point Dr. Freeman had said, "As long as they've been awake for an hour, they can go to sleep." And you know, I would just check on them.

Amanda Whitehouse, PhD 20:39

And they're resting.

Sarah Hornung 20:40

They're resting, right? Like their heart rate's down. Once I really understood some, some of the science behind it, I started to be more empowered to not feel like it was overly restrictive world is going to end if I don't do it perfectly. I got to the point where I trusted what was really happening and what would've happened if they had a problem

Amanda Whitehouse, PhD 21:00

Right. Right. And that just takes experience. You just have to, I think, fight through some of those earlier, more anxious nights and get familiar with their bodies and how they respond to the dose and all of those things that you can only live through, not be told and believe, right?

Sarah Hornung 21:14

And I think the other thing that you said about, you know, some families, they to back off on certain things to make OIT a reality. One of our biggest priorities was making sure that our kids didn't feel that OIT was ever a punishment or some type of feeling of like a negative connotation. We tried to keep it so positive. We tried to make it this really, and you actually were the one who taught me, like the thanks OIT, like having these moments where we recognize, "Hey, thanks, OIT. Because of you, you know, because of your hard work, we get to go to this restaurant tonight, or we get to go to the, the party, or we get to go to a, a hockey game and eat the popcorn at the arena and not worry about whether it possibly came in contact with something." but the other part of that was I never wanted them to feel like they couldn't do a sport that they loved or that they couldn't take on this additional commitment. But we would always say to them, "If this is too much, we can make a change. Um, OIT is a priority right now for our family, but if you're overwhelmed or if this is too much for you, we're happy to support your decision, but the decision always has to be OIT right now because we've decided that this is the best thing for your health." So it was also just giving them the power of like, if you want to stop playing hockey this winter, you certainly can. but they didn't. They never did. They kept going and, and it worked out

Amanda Whitehouse, PhD 22:35

You made it work. And I'm sure you worked very hard to make that happen. I don't want to make it sound like you didn't intentionally do that, but it's doable

Sarah Hornung 22:43

Yeah. We've also, I think, learned that kids respond differently to when mom has them do OIT than dad. So my husband has a lot more success getting the kids to take their dose than I do. I think they just look at me and they're like, "Oh, I bet we can talk her out of it tonight."

Amanda Whitehouse, PhD 23:00

She looks rough tonight.

Sarah Hornung 23:01

yeah. doesn't look like she's got the fight in her today. Um, so Patrick is a lot more successful with getting them to do their dose, and so he was a huge part of the success of sports with that because he coaches most of their sports also. So it would be like, "All right, come on. You're home from school. Time to take your dose. We've got to go to hockey tonight."

Amanda Whitehouse, PhD 23:22

Well, and I'll just throw in, a lot of families find not just for the kids and how they respond to the parents, but how the parents respond to the kids dosing. And a lot of us moms carry that anxiety in a different way. A lot of families do better when dad can do the dose and maybe isn't so in their head about it or whatever is different about how they experience it, and we all can stay a little more level-headed. So just something for people to consider if they're listening.

Sarah Hornung 23:43

Yeah. And, and sometimes we would have to play like mind games with the kids a little bit over it, where I'd be like, we would kind of... I'd be like, "I'm going to pretend to give the dose, and then we know she's going to say no, and then I'm going to go to the bathroom and you talk her into it while I'm in the bathroom." And so we would we would, we would have these times when we would get desperate, and it worked. It would be like I would leave the room, and my husband would be like, "Okay. Like, I know you don't want to do that, but like, do you think, what if mom was really surprised?" And then I'd come back out, and like she would've eaten the Reese's Pieces, and I'd be like, "I'm so surprised!", "Oh,

Amanda Whitehouse, PhD 24:21

acting and good teamwork.

Sarah Hornung 24:22

oh my gosh. I'm so surprised that you're..." Mm-hmm. So yeah, we would have to get creative sometimes because there's just, that's the reality of it, is everyone gets tired of doing it, both mom and dad and, you know, whoever in your family is helping out with it.

Amanda Whitehouse, PhD 24:33

Well, let's talk about that start, like getting over that initial hurdle of, "All right, we're, we're committed, we're going to do it." How did that go for your family?

Sarah Hornung 24:46

We went really, really slow. The up-dosing and all of that was as prescribed and as gradual as possible. If he had a hockey tournament, if we skied that day, like we are a family who skis too, so in the winter it was like, a long day of skiing, if it was great conditions, we'd get home and be like, "Oh, maybe we should skip OIT tonight." So those were the things that early on we had to learn how to manage. And I think the other thing is, like, traveling. That was a really big struggle for us early on. We just had to start thinking differently about what we were doing.

Amanda Whitehouse, PhD 25:18

Well, you mentioned the snow. That was always my rule. If I can't shovel or snow blow a path to the road for the ambulance to get here, we are not dosing.

Sarah Hornung 25:25

We're not doing it.

Amanda Whitehouse, PhD 25:26

Nope

Sarah Hornung 25:27

Yeah. And sometimes those were also, like, days that the kids really thought were fun, and it became sort of like a special thing of, "Oh my gosh, we're snowed in. Like, should we skip OIT tonight?" And, and they loved that, that feeling of like were in it together

Amanda Whitehouse, PhD 25:41

Mm-hmm. Did they all start on day one together and go to every appointment together, all three updosing every time? I can't remember

Sarah Hornung 25:50

They did not all start at the same time, but they all eventually got onto the same updosing schedule. But my oldest was the one that we sort of felt like, let's have him start, if we can handle it, see what it's like before we commit to all three kids doing it. And so I want to say he had like a eight to 12-week headstart from the other two. His start was actually really, kind of sad because I messed up when the appointment was for him to begin, and we got all the way to Children's Hospital, and it was also the day of his Halloween parade at school. And I mean, we waited months for the first appointment because it's the type of thing, like you might not c- be able to get in for six months or more. So I felt like I couldn't cancel the appointment. I couldn't change it. He was so disappointed. I think he was probably in second grade at the time that he started. I said, "I promise we'll do something really special for Halloween instead because you're missing your Halloween parade." So we get to the Children's Hospital, we check in, and they're like, "Your appointment is next week." I, I mean...

And the part of that that was so heartbreaking was, number one, he was missing something really fun at school, but number two, we had like coached him up for this big day. We knew this was going to be a scary day. We knew there would be a lot of anxiety. He was the one who really had a, a ton of anxiety connected to his allergy already, so I just felt like, "Oh my gosh, this poor kid. I built this up, and now we got there, and it's the wrong day." And so we had to come back again a week later, and, and start that day instead. he started, I think it was like eight to, eight to 12 weeks before the others, and then we got onto the same updosing cycle, which was really, really nice. We went every Monday at 2:00. We'd go to school and work in the morning, pick them up early, go to the updose, and then we'd start our, our two-week cycle again. So it was part of our routine and just something that we kind of looked forward to. And the nice thing with the updose days was then we didn't have to do OIT that night because they did the updose in the office. And they, they sometimes were things that they would look forward to or we would just try to be as grateful for all of the little bonuses that we could

Amanda Whitehouse, PhD 28:02

Yeah. You mentioned anxiety. Will you talk about how you handled that in your family?

Sarah Hornung 28:06

Yeah, absolutely. I have learned so much about managing my anxiety and also theirs. And I think, a very wise person once told me, and it's you, Amanda, when thinking about like labels, you can check, you can double-check, and anything more than that, you once told me, is anxiety. And, um, I tried to use that same wisdom and apply it across all of our OIT journey of, you know, same thing I was just talking about, like listening to them breathing at night or being worried about symptoms or side effects. And so it's like you can look at things and see them for what they are. You can double-check. But once you start getting obsessive about what's happening, that's when that anxiety can easily spiral. Throughout the process, we had to have some times where we leaned back on counseling services. It's something I think should sort of be a required part of doing OIT, is you have to be able to address and talk about the fact that the child or adult, adults can do OIT also, that the person is eating the thing that is most dangerous to them, and how do you explain that to them and get them to understand and feel comfortable?

And so we would also do a lot of talking with our kids about, "But do you feel sick right now? Like, after you've taken your dose, was the last time that you actually felt sick?" And we kept a journal, like you had to keep the log every day of whether there were side effects. I would actually show those to my oldest and say, "Look at the last time you actually even noticed your dose. Isn't that great how science and your body are working together to develop this, this strength?" And so was also just being really honest with the kids about the process and what was happening. and then the, the really big thing I think that helped us is what we call like the "thanks OIT" mindset, where when we would start feeling sorry for ourselves, because that happens, right? Like- Whew. We would get to some points where I was like, "Why are we doing this? And, and why did this happen to us? And, and what is all of this for? Is this just so that, you know, we can have a little bit of comfort and freedom because we're really, like, going to live with this forever?"

And it was about reframing it and saying, "Look at all of these great things that our family got to do this month because of OIT." I think that also the timing of that with the age of our kids was they're starting to go to birthday parties where I don't get invited anymore, or I don't want to go and they don't want me there. It was starting to be able to say, "You can go out to dinner." Like, I'll never forget the first time my, my parents took my kids out to dinner without me, even knowing that they felt empowered to do that and felt comfortable for the first time.

Amanda Whitehouse, PhD 30:58

Yeah. Well, and I, you touched on it, I think it's nice to recognize those moments of what I can eat now, where I can go now. It's much harder to acknowledge and remember how did I used to feel when my kid did this thing, or that I could never even imagine letting them do it, this thing, to, to the emotional shift and the lightness. One of the things I always think about is, like, when you have a headache and you take an ibuprofen, you don't notice when your headache goes away. It just goes away. And it's kind of like that emotionally. You don't notice when it just starts getting lighter and gradually decreases

Sarah Hornung 31:28

I think that's true too with just even, I now am at such a point where my anxiety is, is under control with it that I have to also remember like this is still an allergy, and it still has to be taken seriously. Um, and some of that is also like talking to other people about it. I have to still make sure everybody knows just because we did this and just because you know we've had success doesn't mean you can just make whatever you want for birthday cake. Like, it still can't have peanut in it.

Amanda Whitehouse, PhD 31:56

I think that's one of the trickiest parts. I did a section on this in the book because it's like that transition, not only how do we express to other people, it's more complicated almost in some ways. Like, you're still allergic, but this isn't dangerous, but this is. And then explaining that to the kids, too. How did you navigate that in making it clear?

Sarah Hornung 32:15

So that's been something I think that's really hard for, um, it was harder for my oldest early on, and now he's getting to the point where he really understands it. So egg is a good example of that because you get to this point with egg where you can have baked egg but not raw egg or cooked egg. So he's at the point now with OIT where he can have baked egg. He honestly could, could have cooked egg too. It would probably make him not feel great, but it wouldn't be life-threatening at this point. So he will have, baked goods or he'll have tortellini or some of these things where it's like those were always off limits to us and now we can have something like that in our house. don't tell him every time now because he got to the point where he really didn't care anymore. He understood and trusted that his body would be okay.

A couple weeks ago, he was eating a dip from Trader Joe's. It was like a, um, like a dill dip or something like that. And I realized like, "Oh, he's eating this. Do I stop him and tell him like, 'That has egg in it.' It's like you play that weird game where you're trying to figure out where is the line, and we were home. It was a day we were staying home. So I let-- He ate a, like he dipped a carrot in it, he ate it, and then I kind of said like, "Oh, let me check if that... I wonder if that..." You know, I was like, "Oh, I knew that that had egg," but I didn't want to cause alarm. I didn't want to project anything on him.

So I, I said, "Let me check if that has egg." I was like, "Oh, it does." And you know, and then he was sort of like, "Oh." "D- did you feel, like, do you feel any different?" And he's like, "No." I said, "Well, let me know if you do." And then he just quietly like moved on with his day, you know? That would've been the type of thing that years ago, even if he would've been safe eating it, have caused a major, major setback with anxiety because there would've been like trust wrapped up in it or why was that in the fridge or how did I stumble upon this and not know?

So I think it's his ability to also get to the point where he's like, "I know that that had egg, but I also know I'm okay." He's finally at that point where he's just like, "All right. It is what it is, and moving on with my day." My daughter right now really doesn't understand why she can sometimes eat peanut and why it could also really hurt her. She doesn't really understand why she can eat peanut in one instance, but why it's also very dangerous to her.

I even recently drew her a picture of like showing her like small dots getting bigger, and I tried to show her like exactly what the OIT process really is and how right now, you know, you, you started here, you're about here. If you were not allergic, you'd be up here. So you can never have this much. You can only have this much. I tried to give her a visual for it, but she still didn't really get it. But I think that's also because she started when she was three. So m- my boys started when they were old enough to know and remember what life was like avoiding your allergen. This is the only thing she's ever known. It's all she remembers. So for us to say, "Well, you have peanut every day, and you can't have peanut every day," it's just a little bit confusing for her

Amanda Whitehouse, PhD 35:24

I've worked with a lot of families where the teacher will call or s- the, you know, leader of Sunday school will be like, "I'm really confused because she told me she eats peanut every day, but the paperwork says…"  So I think what they say to others too could really get misconstrued if, of course, they don't understand it. It's so confusing.

Sarah Hornung 35:39

That actually is exactly what happened to her in kindergarten was she was getting to the point where she was able to have baked egg, she knew it, and she was regularly, but the allergy care plan still said she was allergic to egg. So her teacher wouldn't let her have cupcakes at birthday parties. And so she kept saying to me, "Mom, can you please tell her I can have cupcakes?" Like she it was like, and then I had to explain to her, "Well, I know you can have cupcakes at home, but just in case you have gym right after, just in case it's..."

Finally we got to the point where I had to have the allergy plan actually changed because the teachers and the school nurse are going to uphold what the plan says, and they're not, they're not comfortable, and I don't want them to be comfortable in the gray area. But I think, you know, and, and just to like pivot a little bit to what I do for work and, and supporting what that looks like in schools, think OIT is one of the reasons why food allergies in schools have become more complicated because there's a bigger spectrum of comfort for people what it looks like to have an allergy in a school. You've got kids who won't eat in the cafeteria. You've got kids who will sit at the table now. You know, are kids who will buy lunch because they've done OIT, and so they have a little bit less of, you know, a concern there. So that has caused a lot of I think, for schools of how do I keep kids safe? And what works for one family might be completely different. It's a very personal plan now because of things like OIT.

Amanda Whitehouse, PhD 37:11

Yeah, that's a great point. I mean, from your insight and your position there, how do we navigate that? How do schools tread through that?

Sarah Hornung 37:18

A huge part of it is just being a partner with the family and communicating. It's so much to do with communication. you know, when I started as a teacher, food allergies were not nearly this prevalent, and we didn't have OIT. So it was like, if you were allergic to something, you were allergic, and it was completely off-limits, and you sat at the allergy table, and that was really the whole plan. That was that was what it looked like to have a food allergy either in your classroom or if you were the child with an allergy.

Now it really looks like, okay, here's the plan, but we're going to have a conversation with this family about what this looks like in practice, and how are, how are we going to be responsive to family wanting it to look a little bit different? Even before OIT, I was always of the mindset that I didn't want my kids to sit at the allergy table because I wanted them to be included, but I also wanted them to be able to advocate I wanted them to be independent and, you know, I think it all depends on who your kids are and whether you trust them

Amanda Whitehouse, PhD 38:23

And what their allergen is?

Sarah Hornung 38:25

Exactly. Whether... Right. I mean, we were dealing with a food, uh, with, um, an egg allergy, not a peanut allergy at that point. So I think the likelihood that egg was smeared on their, food would be different than the likelihood that peanut butter would have been. So, um, but you know, even with that, like my kids have experienced bullying because of their allergy. They've experienced unpleasant situations where kids didn't believe them, didn't understand it, want to understand it. So, I think that's where schools can really be as supportive of families simply by communicating and keeping that open line of, "Hey, this is the event that we have coming up," or, "This is the idea that I have. What does success look like for your family when I'm planning this event?"

I think that's a really good question that any teacher or administrator or nurse can ask is: what would success look like for your child this event? And letting families dictate that because some families are going to say it would look like her getting to pack her own thing because I want her to be as safe as possible. For other families, it might look like having everyone in the class eating the same thing, including the child. You know, everyone has a different level of comfort, so just having that open door for families to be able to communicate what it looks like is really important

Amanda Whitehouse, PhD 39:47

I love the way you worded that. I wrote it down. That's the way to ask it, yeah. And so you're already in an administrative position, but you've decided to go back to school and get a doctorate degree to kind of tie this into the work that you already do. Can you tell us just a little bit about that decision and what you're going to be doing?

Sarah Hornung 40:03

So yes, I just finished my first semester of my doctoral program, and it's a doctorate in leadership and innovation, and I originally set out to be able to have a greater impact in what I do on a day-to-day basis, which is curriculum and innovation. So that's my title, is assistant superintendent for curriculum and innovation. It's always been a personal goal of mine to get a doctorate, but I also felt that there was a lot of research out there that I could be doing around some of what NYU calls our problems of practice. So issues that are prevalent in our workplace. One of the reasons that I really love this program in particular is because it is you're doing a problem of practice where you're selecting something that is a struggle for you in your organization that you want to improve through research.

And when I set out to start it, I really was, I had an idea of what I wanted that research to be. this winter, when I was at my, one of my first classes, I was having a conversation with another person in my class who an allergy or an intolerance to gluten. And she were talking. I said, "Oh, I have three kids with food allergies. I understand." And I started to just tell her all about my passion around advocating for kids with food allergies, and how can we make schools more inclusive places. And she said, "Oh, so is that what your problem of practice will be in this program?" And I was like, "No, that's not what it is, but it should be."

Amanda Whitehouse, PhD 41:29

It is now.

Sarah Hornung 41:30

It is now. And, and so I recognized that is something that I think early on I was looking for that information. Like, I was Googling, "How can I communicate with my school nurse for my, on behalf of my kids? How can I make a plan that..." I even remember creating different documents for my children's teachers of, "This is what they can have. This is what they can't." I wanted to help with the playbook for families and for schools. so that night I got back to my hotel room. I texted my superintendent. I was like, "I feel like this is what my dissertation should be on." I should be interviewing families, not just here in our community, but across the country about what does it look like to, create a truly inclusive environment for families and kids with food allergies? And how can I elevate the voices of families who have maybe suffered quietly?

For kids who have felt that their medical need and that their, unique story has been kind of invisible to many people because it is in many ways an invisible part of us, where unless you say it out loud, people don't know what you're suffering from. Or also, maybe it's not suffering. I think, you know, that I've said this to you many times, like the joy that our family can feel in, in talking about allergies and identifying that it's something that's been hard but also manageable and just being able to elevate those stories and help inform people on what it really looks like and, and sounds like to be a food allergy kid.

Amanda Whitehouse, PhD 43:02

Awesome. Well, thank you for that work, and we will have to have you back again when you get that dissertation under way. Yes. Which will fly by. But I'm sure that's going to be amazing. So, thank you for doing that for everybody.

Sarah Hornung 43:15

Yeah. Yeah

Amanda Whitehouse, PhD 43:15

I'm going to put you on the spot because I didn't, we didn't prepare this question, but I want to wrap up because I think this is what people will want to know from you, mom of three kids in OIT maintenance. Give us your top practical tips. How do you actually make it work? I mean, you said some already, but if you could pass the wisdom down to people who are about to take it on or in the middle of it, what made it doable?

Sarah Hornung 43:37

Oh, gosh. I think the thing that made it doable was when I recognized it didn't have to be perfect. When I kind of acknowledged that if this is going to work, the most sustainable version of it is the one that our family can sustain. And looked like, we're, we're traveling this weekend. We're just not doing it, and if that means we have to go back a couple doses and build back up, we can do that." Maybe we didn't move as fast as we could have, but we were moving at a pace that worked for our family and that made it a sustainable model for our family. And I think that is probably the number one thing is just being scared of it being perfect. But in practice, in reality, whether it took us 12 months, 18 months, 24 months to get to maintenance, it was doing it at a pace that worked for our family. So I think that's probably one thing.

And then I think the other is just being really open with your support system, the people that are going to help you, the people that are going to protect you when you need it, right? It was being open with my employer. "This is what my family is going through. It's really, really important. It's not going to be forever, but for the next year I'm going to need some flexibility," right? "I'm going to have my phone out in meetings because I'll always have this fear that someone's having a reaction," or know, just being honest with people. And then for our family and friends it was saying like, "Can you come over and, and hang out with us because we've going to do our dose tonight," and, "Can we host the holiday because we would rather do it at home so that at the end of the holiday we can take our dose on Easter night instead of maybe having to travel back from somewhere." So it's just being honest with people. and people want to help. They really do.

And, uh, then celebrating the milestones was, was probably the biggest thing for the kids, was like, "Wow, now you can eat at a restaurant." You know, I'll never forget when we got like the all clear for cross-contamination. was a really big milestone. and just being able to say, "What restaurant have we never been able to go to that we can go to now?" just finding those, those things or sitting at a Bisons game and being just thrilled that we could have the ice cream and not worry about if the label was accurate or not. It has accomplished something that our family would not have survived without over the last few years.

And I think that's the win is whether we can sustain it for 10 more years or two more years, we got through a really challenging part of our family's years where the kids were too little to advocate for themselves, and we were able to put in this layer of safety and support and a voice through, through the protection in places that may not have been able to protect them

Amanda Whitehouse, PhD 46:24

Yeah. That's the perfect note to end on. Thank you so much for sharing all of this. You're amazing. I'm so glad the kids are doing so well

Sarah Hornung 46:31

Amanda. Thank you for having me on the podcast again.

Amanda Whitehouse, PhD 46:34

Of course. Another episode to come soon in a couple of years!

Sarah Hornung 46:39

With some, with some more progress and updates, I hope.

Amanda Whitehouse, PhD 46:43

Absolutely. I hope all good ones.

46:45

Thank you for listening, and here are three action steps that you can consider doing this week to follow up on this episode.

Number one, if you're considering oral immunotherapy, OIT, or if you're already in the middle of it, share this episode with your partner or another support person. I think that real voices of people who have lived these experiences are the most important part of making decisions for ourselves.

Number two, take a moment to reflect on Sarah's brilliant question about what success looks like for your family. That doesn't have to mean for OIT. That can mean for the school year ahead. That can mean for a particular event or activity. Sarah's story is a beautiful reminder that every family's journey through treatment is different, and her perspective as a school administrator reminds us we can play an active and effective part in shaping our experiences.

And number three, if you are navigating allergies, treatment decisions, and you want more practical tools to help you think through the emotional and logistical aspects of immunotherapy, I'd love for you to check out my new workbook, From Fear to Freedom: A Workbook for Navigating Allergy Immunotherapy. I wrote it to help families feel informed, supported, and empowered throughout the decision-making process, and I hope that it is helping families out there. If you have read it, and you'd be willing to take just a moment to leave an honest review on Amazon, It would go a long way in helping other families find the book too. Thank you so much for listening, for all your support, and I will see you again next week

Amanda Whitehouse, PhD 48:11

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.