Don't Feed the Fear: Allergy Anxiety & Trauma
Welcome to "Don't Feed the Fear," where licensed psychologist Dr. Amanda Whitehouse offers expert guidance on managing the social and emotional challenges of food allergies, celiac, and related conditions. Tune in for compassionate advice, practical strategies, and inspiring stories to help you navigate anxiety and trauma with confidence and resilience.
For more info on resources from Dr. Whitehouse, go to www.thefoodallergypsychologist.com
Theme song: The Doghouse by Kyle Dine, www.kyledine.com
Used with permission from the artist
Full transcripts are available to support accessibility and inclusive listening: https://www.thefoodallergypsychologist.com/dont-feed-the-fear-blog
Don't Feed the Fear: Allergy Anxiety & Trauma
#72 Preparing for Immunotherapy: Dr. Dave Stukus on Tests, Challenges, and Expectations
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My second guest for this special podcast season guiding listeners through the immunotherapy process welcomes back Dr. David Stukus, Director of the Food Allergy Treatment Center at Nationwide Children's Hospital in Columbus, Ohio and President-Elect of the American College of Allergy, Asthma & Immunology (ACAAI).
Dr. Stukus shares his clinical approach to preparing patients for food allergy immunotherapy, including the role of diagnostic testing, oral food challenges, and threshold challenges in clarifying treatment decisions. The discussion also addresses the mental preparation required for immunotherapy, common fears and hesitations families experience, and what realistic benefits patients can expect during and "after" treatment.
Listeners will gain insight into:
- What medical tests and food challenges may be recommended and why
- How allergists assess readiness for immunotherapy
- The common “bumps in the road” during treatment
- What happens once maintenance is reached
- And how to think about long-term outcomes when treatment is considered “done”
This episode offers practical, evidence-based guidance for families seeking clarity before beginning food allergy treatment.
-Follow Dr. Stukus on Instagram @pedsallergydoc
-Retail Food Equivalents for OIT article:
https://www.sciencedirect.com/science/article/abs/pii/S2213219822010650
-Dr. Stukus' first appearance on the Don't Feed the Fear podcast (Episode 18):
https://www.buzzsprout.com/2371319/episodes/16808272
Follow me on social media @thefoodallergypsychologist and sign up for my newsletter on my website for updates on my book, From Fear to Freedom: A Workbook for Navigating Allergy Immunotherapy, coming in June!
https://www.thefoodallergypsychologist.com/connect
Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme!
www.kyledine.com
Find Dr. Whitehouse:
-thefoodallergypsychologist.com
-Instagram: @thefoodallergypsychologist
-Facebook: Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist
-welcome@dramandawhitehouse.com
When it comes to oral immunotherapy, it's all made up friends. It's all completely made up, right? So just because we had these research studies from 10 years ago that helped give us this great information to guide the way, that doesn't mean that's the way it has to be done for everybody. There's so much flexibility, and flexibility is the key when it comes to OIT.
SpeakerWelcome 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, PhDOn this season of the podcast, we are walking step-by-step through the immunotherapy process. Not just the science, but the decision making, the preparation, the emotional realities, and the long-term expectations. Immunotherapy is no longer a fringe or experimental conversation in food allergy care. For many families, it's a real and viable option, but deciding whether to pursue treatment, how to prepare for that, and what it truly involves requires clarity, collaboration, and realistic expectations. For today's episode. I'm honored to have back on the show, Dr. Dave Stukus, board certified allergist, nationally recognized educator and President Elect of the American College of Allergy, Asthma and Immunology. Dr. Stukus is widely respected, not only for his clinical expertise in food allergy and immunotherapy, but for his commitment to patient education and his ability to translate complex immunology into accessible evidence-based guidance that empowers families to make informed choices. You may know him from social media @allergykidsdoc, and in this conversation, Dr. Stukus will help us explore what true preparation for immunotherapy looks like. He's here to tell us about the types of testing, oral food challenges and threshold challenges, and why they matter. Mental preparation, common fears and misconceptions about immunotherapy and what it actually means for treatment to be done. Dr. Stukus and I hope that this will help you approach your questions about immunotherapy with good information to take to your own doctor to discuss. Dr. Dave Stukus, thank you so much for coming back onto the show. We love hearing from you and I'm excited to get your insights on leading up to and preparing for oral immunotherapy OIT. It's a complicated process and you know it very well, so thank you for being here.
David Stukus, MDIt's my pleasure. Great topic. Near and dear to my heart, and I hope that this is helpful for all of your listeners.
Amanda Whitehouse, PhDWell, I'm sure it will be. Before we start, could you give us just a little bit of background again? I'm sure they all follow you already, but tell us where you're working and what, role OIT plays in your practice, in your clinic.
David Stukus, MDYeah, I'm the director of the Food Allergy Treatment Center at Nationwide Children's Hospital in Columbus, Ohio. We opened our center four and a half years ago, and all we do is pediatric food allergy. So in order to get a new patient consultation with us, you have to have a primary concern for food allergy. And of course, we address all the other conditions that kids often have, like eczema and asthma and allergic rhinitis and things like that. But allowing us to have a dedicated space for this has really helped us just focus on providing, up to a thousand oral food challenges a year, which is the most vital part about what we do. Treatment with oral immunotherapy, with omalizumab, personalized, individualized care for every family walks through our door, so we love it. We are trying to reach as many people as we possibly can.
Amanda Whitehouse, PhDI am sure a lot of people listening if they're not already wondering, will be by the end of the discussion. Can they just call the clinic? Do they have to be in the state? Can anybody be a patient there?
David Stukus, MDYeah, as of right now, you need to come see us. I'm working on trying to get interstate telemedicine, so stay tuned for that. You need a referral from your pediatrician, or you can actually go on our website and schedule an appointment yourself. And they have the referral put in after the fact. And then, yeah, we're happy to have you. We serve as a second, third opinion even for folks in our own community who've seen other allergists and maybe, you know, didn't get the in depth perspective on food allergy nuances and management and things like that. And we have people come from all over the country actually. They come in to see us for our, our thoughts, and we're happy to help.
Amanda Whitehouse, PhDGreat. Well, I can tell why they do. I mean, people just have so much confidence in listening to you talk about this. We are talking today about preparing for if, if we're deciding to move into immunotherapy, where do you start? I think patients get overwhelmed at all of the testing and challenges and all of those things that go into the conversation that their doctor wants to have about whether or not to recommend OIT or SLIT potentially. But for most people, we'll be talking about OIT. Where do you start?
David Stukus, MDI start every single family. It's a shared decision making conversation. And upfront I say, there's no right or wrong answer. What works for your family may not work for another family. You can decide six weeks from now, you can change your mind at any point along the road. And I don't want to have any pressure on you feeling like you have to get the right answer right out of the gate. If it's the first time I'm meeting them, I say, I really don't think you need to make a decision today. We have information that we offer them. And really we walk through the, the three main options, which are ongoing avoidance, understanding what various risks are from different types of exposures, as well as prognosis for how likely it is that your child is going to outgrow their individual food allergies. We talk about oral immunotherapy. Including the risks, benefits, expected outcomes, and the daily regimen involved. Uh, and then we also talk about omalizumab because for some people that's, that's the right choice, and what that entails as well, including risk, benefits, expected outcomes. And really it is, I tried my best to make it as pressure free as possible. I met families actually today. It was, it was like my follow-up day, and these families are, are choosing avoidance and it's because it fits with their lifestyle and there's nothing wrong with that. Maybe they're allergic to one food and they just find that it's not cumbersome for them. It really doesn't cause a lot of anxiety and they get to travel and participate in activities and go out to eat without any worries. Whereas a different family whose child's allergic to the same allergen may say, no, no, no. We wanna be proactive and pursue treatment. So everybody's a little bit different, but it, it should be pressure free. And I hope everybody out there, I hope you have these conversations as well.
Amanda Whitehouse, PhDYeah. I hope that that's how it's being presented because really, and maybe we can talk about that first. It's a big undertaking, so I'm curious about what that conversation sounds like and how many people maybe were interested, but then after hearing what it entails, decide that it's not right for them.
David Stukus, MDA considerable amount. So that's what I walk through is I, I say, here's what we can achieve. We can desensitize just about anybody. Most people, we can get them to eat increasing amounts of what they're allergic to and improve their tolerance over time. And the trade off is, this is part of your daily life. Allergic reactions can occur, but we've learned enough to know that we can lower that risk considerably by taking certain precautions, like making sure that we're as consistent as possible with dosing, making sure that we have a full stomach every time we get the dose, and then we say no intentional exercise for roughly two hours afterwards. And for the vast majority of people, you know that that works really well and they, they tend to tolerate it. for some families, if they have multiple sports that their child's involved with, or if they have poorly controlled eczema, poorly controlled asthma, allergic rhinitis, we need to get that under control first. OIT can wait, because if we don't control those other comorbid conditions, this is gonna be a nightmare for you 'cause every time your child gets a rash or they sneeze, or they start wheezing, we're gonna think that it might be related to their treatment. So we have to take that into consideration as well. And then we've learned this through some interesting interactions. All caregivers need to be on board. So if there's, if there's any strife between one parent and the other, or if there's split custody and one person's not on board with it, it's, it's gonna be really challenging to make that work. Um, and then, you know, we wanna make sure that everybody's on board for that as well. So those are just a couple of things that we kind of go over.
Amanda Whitehouse, PhDThat's a great point. Thank you for mentioning that because obviously a lot of families are in that situation, and that's a tricky thing to navigate and I assume could be dangerous if dosing is happening at one house and not the other consistently. I would assume the risk of a reaction would be much higher for a child in that scenario. So,
David Stukus, MDYeah, that's a really scary scenario. Yeah, and thankfully it's been, you know, few and far between, but when we do encounter that, it's, uh, it, it's not gonna go very well. So we, we talk to families about other, other options.
Amanda Whitehouse, PhDokay, so if a family's in your office, you talk about all of the options and they say, we wanna go for it, what comes next as far as testing? You already mentioned that word, everybody dreads food challenges. How does that play into getting ready to start?
David Stukus, MDSo we started something a couple of years ago in our office where we do something called a threshold challenge, where we have people come in where we we're pretty sure that they're allergic. We, we do wanna make sure people are actually allergic to their food before we put them on a potentially years long therapy. Uh, I've heard a lot of interesting stories where. Children are diagnosed with food allergy that they've, they've never eaten the food or had a reaction and just based on testing alone, then they're put on OIT for years and years. Uh, we like to clarify like, are you actually allergic or not? 'cause there's a ton of false positives on testing. And with our threshold challenges, what we do is we give very, very small amounts. Um, you know, if, if like a typical peanut contains 300 milligrams of protein, we're starting at like 10 milligrams. Uh, where we know off the bat population-wise, very few children will react to that. Uh, but if we do identify people that react to that, we need to know that 'cause we need to adjust our protocols to make sure that it's as safe and belt well tolerated as possible. And then we typically go up, we'll kind of double the dose until we re reach one whole peanut, so it's about two peanuts cumulative. Or, or one peanut is the highest dose. If no symptoms occur, we have a conversation of do we want to just. You know, continue at the highest dose and take a couple weeks off the buildup protocol. Or do we wanna come back for a full challenge? 'cause maybe they're not actually allergic. Uh, but if symptoms do occur at lower doses, that tells us where we can start our protocol. And it's different for every family. So sometimes we can shave a few weeks off of treatment as far as the buildup, other times we can't. And they do react to very small doses. But what we've learned most importantly. These visits, they're very safe. It's very empowering and knowledge gathering. So this is our onboarding of the families. We're spending three hours together. If that child is unwilling to eat, despite our multiple best efforts to mask the food or whatever it is, maybe they're not ready for oral immunotherapy. And that's, that's a huge thing for all of us to learn together. Uh, 'cause as desperately as the parents wanted. If their kid's not gonna eat every day, it's not gonna work. So that's one thing. Or more often than not, we see kids that have more mild symptoms and sometimes that's very anxiety provoking for families, but we can reassure them. We can say, no, no, no. Listen, this blotchiness isn't really worrisome for a reaction. They're probably gonna experience this throughout treatment. That's nothing to worry about. Here are the symptoms that we do worry about. For some families if they recognize that their child's naturally bite proof and they don't really have to worry so much about precautionary labels and cross contact and things like that, maybe they change their mind and they decide not to pursue oral immunotherapy. So this is not widely available, but this is something that I hope more people would consider adopting 'cause we found it extremely valuable in our practice.
Amanda Whitehouse, PhDAnd it doesn't sound like there's any risk to not doing that and then just starting at the lower dose, there's cost and there's time, but if you're starting at a dose lower than your threshold, that doesn't hurt anything. Right.
David Stukus, MDYeah. Yeah. And we offer that option. So, so actually it's interesting. Very few families choose that option. Um, they all want to come in and kind of see what happens and, and it's a valuable learning experience. But in our practice, and this is a little different from others, is we truly individualize therapy. It is not one size fits all, and we base that upon each person's individual threshold. So, there's nothing wrong with just having the same protocol and starting everybody at the same dose and going to the same maintenance and things like that. It's a different way of doing things.
Amanda Whitehouse, PhDYou did mention there's a lot of times, especially in the kids hesitation to actually eat the food. Can you tell us about what you think helps or hurts as far as that goes with the anxiety and the fear that lead into a challenge?
David Stukus, MDYeah, the toughest age group are probably like late toddlers, 3, 4, 5, 6 year olds. If they don't want to eat, there's not much we can do. 'cause sometimes they don't have the cognitive development there that we can actually like bribe them and bargain with them, so younger, like babies and infants are doing great, uh, adolescents and older children, we can often like bargain with them in some way, um, or find ways to mask the food or like, you know, have a conversation with them. Um, but it is a lot of sort of reward system based, uh, for those younger children that don't quite have that ability to really reason through things. It takes a lot of time. We wanna make it as pressure free as possible. I mentioned before, there's a lot of parents that are just desperate to do anything, but if your child's not willing to eat it, this is gonna create such anxiety and strife within your family that it's not gonna be worth it. But we have lots of options available and that's, that's the benefit of us doing it together in the office, is we can learn like, okay, we have all these different sort of ways we can approach this, but based upon texture and volume and what it smells like or tastes like. And that's where we can kind of play around with things.
Amanda Whitehouse, PhDCan you talk us a little bit through, um, more detail as far as what it looks like You're in the office for a few hours, we're working out gradually on doses. Tell us more of the actual play by play to help people visualize what a food challenge is going to look like when they get there.
David Stukus, MDSo regardless if it's a threshold challenge or an a regular food challenge, the only thing that differs is sort of our goal highest tolerated dose. So if we're trying to figure out if somebody is actually still allergic, uh, we want to go for about a serving size. If it's a threshold dose, we're gonna go much, much slower. If some of this is based upon their clinical history and you know, our. Our likelihood that they're gonna cause a reaction. We can stratify everybody. Low risk, medium risk, high risk as far as what reaction will occur. Unfortunately, we don't really know if somebody's gonna experience anaphylaxis unless they've had had a prior history of anaphylaxis and that would predict that they will again in the future. Because it can occur even for people who haven't had that history. So we have to be prepared and that's why we go slowly. So we always tell people, bring lots of things to keep you occupied. You're gonna be there for about three or four hours. Somebody's always in and outta the room for every 10 or 15 minutes. Plus we're readily available, usually right around the corner from them. So it's one of our staff members or myself, and we, we start with very small amounts and we essentially just double the amount they get every 10 or 15 minutes. We observe the child, throughout and we examine them before each dose to make sure there's no signs of allergic reaction. It's often not nearly as scary as people think it is, 'cause they think it's gonna go from like zero to 60. And the first sign of any allergic reaction is their child's airway is gonna swell shut. That's not what we see. We see a couple of hives pop up. Or for children, it's really their demeanor, and that's what we counsel families. If I walk in a room and there's a baby who all of a sudden they were playful and happy, and now they're curled up on mom or dad's lap, and they look uncomfortable, that tells me there's something going on. Whether it's they're itching or they have some nausea or something like that. So it's tons of education and just counseling throughout. Uh, but, you know, bring lots of stuff. And then we always counsel, so for adolescents and older children, if they've been told for years and years and years, avoid, avoid, avoid. If you eat this, you're gonna die. It's a normal part of the experience for their very smart brains to tell their body, what the heck are you doing here? So almost universally, their throat's gonna feel funny. They're gonna have butterflies in their stomach, their saliva's gonna feel thicker. And I counsel them. We say, listen, this is what your body's going to do. It's gonna happen almost immediately the first time you eat it. I want you to tell me if you experience this. I'm not worried that that's an allergic reaction. Uh, that is your smart brain saying this isn't right. And then we counsel families to try to avoid the, are you okay? Are you okay? Are you okay? 'cause then the child's gonna say, I don't think I'm okay. And that can
Amanda Whitehouse, PhDRight, right. How's your stomach? Does your skin itch? Do your ear. Yeah. Right. And we.
David Stukus, MDDistraction the key. Absolutely.
Amanda Whitehouse, PhDYeah. And for kids who do better being prepared as far as what that's going to look like, are you checking skin, blood pressure, pulse ox? Are you looking in ears, nose, and throats? What do you monitor so those kids can be prepared for all the poking and prodding that usually isn't painful, but can be intimidating to them.
David Stukus, MDthis will vary a little bit by practice and their, and their comfort level. But typically, you know, we'll get vital signs at the beginning and we may need to get them again if there's, you know, signs of an allergic reaction. But typically we're gonna look at the skin. So we'll do a good thorough skin exam. And if you do enough of these and with the experience like we have, after doing 10 tens of thousands of these, we can see by walking in the room what we think might be a reaction, so then we can start to counsel families. And then most importantly, if we start to see symptoms, like for me personally, if I think, oh boy, this, this child's starting to react and we may have to give some treatment here. You're not gonna see me panic. In fact, you're gonna see me just calm down and I'm gonna sit down often lower than where the parent of the child is. And I'm just gonna walk them through it. I'm gonna say. You see these little spots here on their face, I think they're starting to activate those allergy cells, and I think this is the first sign of allergic reaction. And you know, either we're gonna monitor right now, we're gonna keep a close eye on you, or here's the treatment that I recommend to make you feel better, you know, right away. Everything's nice and calm and it's, everything's gonna be okay.
Amanda Whitehouse, PhDI can hear listening to you describe that, how, obviously we don't want that to happen, but how helpful it would be for families to have that happen in the context of the hospital with a calm doctor and with guidance as far as what they're looking for. It sounds like such a regulating experience for something that's such a dysregulating process.
David Stukus, MDYeah, we, so we can answer the, there's like a thousand what if questions? We'll answer 900 of them during your food challenge. And if you wanna know how much they need to eat to cause symptoms, what do those symptoms look like? What's the feel inside your body? So even for teenagers, they've avoided a food. They were told 15 years ago that they're gonna die if they lick it. They were all the outdated information that, you know, we talked about before in your podcast, that sort of thing. Even when they have a reaction. Especially those who are heading off to college, you know what they do. You know what they say to me a hundred percent of the time? They say, thank you. Now I know what it feels like. If I'm out on my own and I eat something, I know what a reaction's going to feel like, and I know when to treat. Even when we give epinephrine, they say thank you. Now I know I'm not scared anymore. I know the needle isn't as bad as I thought it was, and I see how fast it worked. Uh, we have parents administer epinephrine to their children. We walk them through it. We say, listen, this isn't this. Just take your time. We're gonna get settled here and here's how we're gonna do it. Here's what to watch for. And they say, thank you. Now we know we have the courage that we can do this. So even when outcomes don't go exactly as we want them to, it's a powerful learning experience for everybody involved.
Amanda Whitehouse, PhDThat's so helpful. I, I've seen the same with the patients that I work with, both with feeling what the needle feels like, but also how quickly they feel better when they get the epinephrine. And from then on They have no hesitation. They want like, gimme the stuff, it makes me feel better immediately. And it shifts from fear to so much trust in it and then to administer it themselves, but with someone watching is so reassuring to make sure they did it right and to guide them through it. It's really powerful.
David Stukus, MDYeah, and you, you know, you know this better than anybody with, with food allergy, so much of the anxiety comes from fear of the unknown, right?
Amanda Whitehouse, PhDMm-hmm.
David Stukus, MDfirst day of school. I'm afraid of the first week of school. I'm afraid of the new school year with a new teacher and a new nurse. I'm afraid of the birthday party where I don't know the parents, I don't know the children. It's all this fear of the unknown that just builds and builds and builds. Well, if we can actually have you experience that in a very safe environment and walk you through it, we remove all of that, right? It's just we're walking you through it and you're we're, it's a lived experience now, uh, and it's, it's the best part of my job.
Amanda Whitehouse, PhDYes. And it's so true because the real experience is never as bad as the way we imagined it. We always, adults too, we make it so much worse in our heads than what it actually turns out to be.
David Stukus, MDYeah. Can you help us with all us, all of us with that while we're at it?
Amanda Whitehouse, PhDI, I'm working on it. I'll tell you this, the term is helpful.
David Stukus, MDfigure that part out.
Amanda Whitehouse, PhDAnticipatory anxiety, anticipating the event is always worse than whatever, like the worst possible thing, you know, that could probably happen there. That's
David Stukus, MDYeah.
Amanda Whitehouse, PhDbest reminder. I wanted to thank you too for describing the procedures because I think this is important for parents to tease out with their kids before they go into it and really allow the kids to express it. When my son was first going into his treatments, he was a little bit scared of everything that they were gonna be doing, not the actual oIT dosing, but we finally figured out that he hated that automatic blood pressure cuff machine. And when we could get a nurse just to do it by hand without that big noise that it makes when it puffs up and be able to do it quicker and not squeeze as long, he was fine. So of course we were assuming he was afraid of the dose because I was afraid of the dose in my mind. Sometimes kids can express exactly what it is and you can walk them through it and, like you said, eliminate this unknown that they're imagining, or a real thing that's happening that's you're able to work around.
David Stukus, MDYeah, absolutely.
Amanda Whitehouse, PhDIn addition to the food challenges, do you do a lot of testing to prep people? Can we talk about that.
David Stukus, MDYeah, so I mean, hopefully nobody's making the diagnosis of food allergy without, you know, confirmatory testing. Uh, it's important for everybody, for those of you who follow me, you know what I'm about to say. So, our allergy tests are not screening tests. We can't just test for a bunch of foods and see what comes back and call it positive or negative. That's not how they're designed to work. They never were, never will be. They're used to confirm suspected reactions. If your child is eating a food, and they're not experiencing reproducible, acute onset reactions like hives and swelling and vomiting. They're not allergic to that food. That's the best test possible. If they are experiencing those symptoms, then we should be doing either skin prick or blood testing to make sure that we're finding that IgE allergy antibody that goes along with the diagnosis of it. If we go by the testing alone, we're gonna over diagnose the vast majority of children as having allergies. They don't have. This is how lives get ruined. All these panel tests, you go in worried about egg and then they run a test for milk and banana and rice and peanut, and then everything comes back at, you know, 0.25 and they say you're gonna die if you eat it. We need to stop that as a medical institution. And we're working on that on many levels. But, um, if your allergist says We need to do panel testing, please question why. After you already have that diagnosis, we do wanna follow typically blood levels, typically annually and younger infants sometimes will do a little sooner 'cause some kids can outgrow it faster. And then hopefully everybody is having a conversation with their allergist about prognosis. We're less likely to recommend egg and milk oral immunotherapy for like a 1-year-old, 'cause the vast majority of them are gonna outgrow this in the next few years. And once you start on that journey of oral immunotherapy, you never technically know if you outgrow it until you actually stop treatment for a period of time and then try to eat the food again. Whereas if they're allergic to things like peanuts, tree nut, sesame, those are much less likely to go away as they get older. So that's why we're gonna be more likely to start oral immunotherapy when they're younger. But yeah, there's gotta be a combination of testing and the clinical history to make the diagnosis. I've been doing this almost 20 years. I've probably seen thousands of patients as the second, third opinion who have had panel testing done. Not one of them was truly allergic to every single food that they were told they were allergic to. And typically we can make headway, whether it's they're told to avoid all tree nuts and it's actually only two tree nuts. It's their peanut allergic and told to avoid legumes. All kinds of false positive testing. Every single time we can find a way to get at least one or some of those foods back in the diet, and that changes everything. It just makes management much more easy.
Amanda Whitehouse, PhDI'm glad people are hearing you say that because I think it can take this overwhelming process of food challenges and blood work, and all of these really negatively perceived things, it's this thing that could potentially take you from, okay, you have seven foods and actually maybe it's only three, and we can combine the doses and it's not as overwhelming as it might seem at first. Right.
David Stukus, MDRight. Don't get me wrong, this is a lot of work for us to figure out and I tell families this as like we got, we got some work ahead of us and it's often gonna involve food challenges, repeat testing, that sort of thing. 'cause we have to undo the harm that was done through this inappropriate testing. So I would love to just not do the inappropriate testing in the first place. Uh, and you know. Help empower these wonderful families. But when we're, when we're dealt with that hand, we have to figure it out. We can make significant progress. And I mean, it's just amazing when we see these kids start to eat these foods that their families thought was gonna kill them. Uh, and you're like, no, no, no. These tests, they were either interpreted inaccurately, um, or there's other issues here as to why we're finding that elevated result. It's remarkable. But yeah. And we, we have to make it more manageable for them.
Amanda Whitehouse, PhDSpeaking of doing that, are there other myths that you can dispel? I mean, you talked about some of the misconceptions about the food challenges and the testing. What else do people not quite understand or not fully get about OIT that you really talk them through before you dive in.
David Stukus, MDWell, first I address like the elephant in the room. If they come in already the anxiety level of 20, on a scale of one to 10, we talk about why, so why do you want to treat your child? And sometimes they're, they're like, well, I'm afraid that my 3-year-old is gonna die if they go to a playground and there's invisible peanut on the monkey bars and they touch it, and then they put their hand in their mouth. And we say, we need to address this first because this, this altered perception is not nowhere near what the reality is. I love asking families that are, are worried about this because it's so informative to me. Just having that conversation kind of gives the proper context and then we, we provide it even further and we say, listen, it's not like toddlers and school aged children when these tragedies occur, it's almost universally like adolescents and young adults and there's other factors involved with that. Um, so we can just put it in the right context and then just help kind of reframe things. We spend a lot of time talking about risks from casual exposure and how they're typically gonna need to eat the food for it to cause any type of reaction, let alone anaphylaxis. We talk about precautionary labels, we talk about precautions that take when dining out. So it's really addressing all of that understanding of risk before we get into OIT. To be honest with you, I would say even with the extreme anxiety, that can be a helpful reason. We want to help with the anxiety and help those parents, um, but also we also have to address that it's gonna make the experience for them pretty hellish, 'cause they're gonna think that every
Amanda Whitehouse, PhDRight.
David Stukus, MDtheir child sneezes, they're having a reaction to the treatment, but that actually may help lessen their anxiety in some circumstances. I don't think for parents necessarily, there's a wrong reason. I think from a medical professional allergist standpoint, it's if we're recommending it for young kids who are likely going to outgrow their allergy or if they're misdiagnosed in the first place, that's a real problem. And, I think that needs to be addressed as well.
Amanda Whitehouse, PhDOkay. Um, are there other things I didn't touch on as far as misconceptions about then what the actual treatment's going to entail once it starts?
David Stukus, MDI, I think the other thing is, um, families sometimes are led to believe like they have to, their child has to be like strapped to a chair for two hours and they can't move after eating their dose and no, no, no, this is, or like, they can't, they can't go to sleep for a period of time and. All this other stuff. Look, we've learned a ton in regards to, you know, co-factors involved in allergic reactions during treatment. Our own lived experiences with the hundreds of patients we're treating in our center. It is really not as restrictive as, as we once thought it was. The younger that you started, those kids are doing great. I think there's a misconception that babies aren't eligible because they're nonverbal and they have small airways. They actually do better than older children when it comes to it.
Amanda Whitehouse, PhDRight, and the data shows that if we get kids, isn't it under two and under, they're more likely to completely like resolve the allergy, right?
David Stukus, MDYeah, there's more and more data accumulating that the earlier we started, 'cause we, we, we've always been taught, and I've taught others of like OIT is not a cure, right? We can desensitize and protect, uh, especially adolescents, their immune system set. We're not gonna likely, you know, cure their allergy. But there's a much higher likelihood if we start in the first one to two years of life that those kids are, are gonna resolve their allergy, um, after treatment. So it's something to consider.
Amanda Whitehouse, PhDYeah.
David Stukus, MDnot a guarantee, it's not a guaranteed cure, but it's something to consider.
Amanda Whitehouse, PhDRight. And you mentioned that it's important not to pressure people, but I think too, parents take it the wrong way when if there's a little bit of, maybe not urgency, but encouraging from the doctor. You know, the earlier we do this, the better. I think sometimes parents take it as like, oh, they're trying to sell me a treatment, when really it is about the outcomes.
David Stukus, MDYeah, no, you're right. So that's a, a delicate conversation. And typically what I will tell families in that situation, I say, listen, there, there's a window of opportunity here. You don't have to decide tonight or tomorrow. If you decide to wait six months and do the, do a blood test and see what that shows us, that's completely reasonable. We're not gonna miss anything here. Uh, depending on the age of the child, of course. I said, so there's no pressure. And if you decide you wanna start treatment now, we can absolutely do that. Um, but you're right. It, it's, we wanna make it as pressure free as possible. 'cause it's a huge decision. Um, I try my best to get every family to really think through what this looks like in their daily life. 'cause that's what matters. Um, that's what we get the phone calls about and that's, you know, where things kind of go south. Uh, if we just couldn't figure it out, we're traveling too much or there's, we're juggling between the babysitter and our schedules and sports and everything like that. So that's where this tends to, you know, kind of fall off the rails when it does.
Amanda Whitehouse, PhDDo you talk much about that with families in terms of actually preparing what their schedule is and what they might have to adjust or hold off for a while, and those practical considerations?
David Stukus, MDAbsolutely. We have those conversations and we, I can see the parents. Sometimes it's like the mother or the father when they kinda go like, oh my gosh, I didn't think about that. And you're like, okay, that's okay. We can overcome that. Or we give flexibility. Like you don't have to give the dose the same time every day. for some kids, as the volume gets higher, we'll split the dose up. Let's give half in the morning, half at night. Let's make this as easy and practical as possible. So it's really just, that's the fun part, right? Of working with every family about what's the nuance with your family that differs from this family and let's figure it out. 'cause we can almost always figure it out.
Amanda Whitehouse, PhDI've never heard anyone talk about that before. It's splitting up the dose. Then they have, they have two rest periods, I assume if they're splitting the dose in half,
David Stukus, MDYeah. And then as you move along, there's some, and again, this is not individual medical advice for anybody listening, but it, so the whole idea with OIT is. Um, consistent long-term exposure to increasing amounts over time induces tolerance to the immune system. So once, once you reach a certain volume where it's high enough that if it, it's high enough that they're unwilling to eat it 'cause they're too young or whatever, by splitting it up, they're still getting. Even more consistent exposure. 'cause now you're giving it twice a day, and you're doing this long term. It really is just the principles of what we're trying to do here, long term and it works out well.
Amanda Whitehouse, PhDI'm thinking about how helpful that would be. There's so many kids that I've worked with who are younger, and they're this tiny little kid sitting in front of this big bowl of peanuts and cashews and they've got, you know, they've done multiple allergens and it's just looks gigantic compared to their little faces and stomachs. So it's something, again, it's not individual advice, but it would be something worth asking your allergist, I assume, if that's the hurdle that you find yourself against.
David Stukus, MDYeah, and I think this is probably a good time to, here's what I pretty much say every day to families and my colleagues of like, when it comes to oral immunotherapy, it's all made up friends. It's all completely made up, right? So just because we had these research studies from 10 years ago that helped give us this great information to guide the way, that doesn't mean that's the way it has to be done for everybody. There's so much flexibility, and flexibility is the key when it comes to OIT. yes, I just made that up. I realize it now.
Amanda Whitehouse, PhDFlexibility, but consistency.
David Stukus, MDRight, right. Um, so like, yeah, I mean, if you miss a, do we know this, right? If kids miss a dose or two when
Amanda Whitehouse, PhDRight.
David Stukus, MDthey can resume it. They're gonna be fine. If you miss some doses while traveling, you're gonna be fine. So anybody who says you have to have this rigorous protocol, these aren't research participants, this is real life, right? So we can think outside the box a little bit, and yet use our understanding and experience to be as helpful and useful as possible.
Amanda Whitehouse, PhDThat's good to know. Thank you for that reminder, because it does feel like it's so important. It's so rigid in the time period and the rest period and the time of day all are the things that the families I work with are struggling with in terms of how could we possibly make that work?
David Stukus, MDAnd believe me, I, I'm right there with you. So when we first started doing this years ago, I was, I mean, it took me a year to get our program up and running, just 'cause I was so rigid with our protocols and with everything. And I was by the book. And then, you know, after hundreds of patients, you're kinda like, oh no, this is, is not what we thought it was, in a good way.
Amanda Whitehouse, PhDThat's encouraging. That's very encouraging. What other things do you see families end up discontinuing over? What other challenges arise that make things not go well?
David Stukus, MDThe child's sick of eating it. that's usually what it is. It's just the taste. It's hard to mask peanut. It really is. We have different flowers that we can use and powders and stuff like that, that we can mix into things and some families bake it into muffins. And there, there's so many different cool things that we've learned from the families we've worked with and others, and people have published their research. But, at the end of the day, if a child refuses to eat it, there's not much we can do. So that's typically where people need to stop.
Amanda Whitehouse, PhDDo you find a lot of those families willing to maintain, even if the child doesn't wanna keep increasing, is it worth staying at whatever point they reached or do a lot of those kids just fail and they cannot eat it anymore at all? Mm-hmm.
David Stukus, MDWe have that. We say, listen, you're gonna get a level of protection even if we go for smaller doses. So that's something to consider as well. And there's unknowns. Like what happens if you dose every other day or every third day or every fourth? You know, we don't know these things, it's just nobody's really studied it rigorously for us to have this body of evidence that we can say that this is safe or effective. But I mean, yeah, for some families when it comes to that, maybe it is. That's what we can do is maybe we can just break it up a little bit or I've done this with a few families. We work with our psychologists and we say, all right. We get it. And if the child's a certain age, let's, let's let them pick and choose. Let's give them one day a week where they say, I'm not feeling it. And that's it. No pressure, pressure, free zone. You don't have to eat it today. Uh, and that works out well too. That was a kind of a fun experience.
Amanda Whitehouse, PhDAbsolutely choice and control those. That's what we need, anybody to feel comfortable. My favorite tip that I learned from some of the parents, which, if this is helpful and I'll be curious which ones you learned too, is to stop trying to hide it in things that taste sweet. So stop the muffins and the chocolates and the candies and put it in taco meat, put it in savory foods. And that I have seen with a variety of allergens, but especially all the nuts and the sesame to be the most effective thing. What other surprises have you found?
David Stukus, MDYeah, I think that's a great tip. The baking in the muffins was interesting as well. I mean,
Amanda Whitehouse, PhDMm-hmm.
David Stukus, MDindividual muffins 'cause you have to know exactly how much is going in each one, but they're willing to do it.
Amanda Whitehouse, PhDYep.
David Stukus, MDUm, it's, it depends on what they're interested in. So if they like smoothies, that works pretty well. Um, yeah, I like the savory idea. Marion Roach and colleagues published this amazing paper a couple years ago that's been so helpful for all of us where they took retail food equivalents and broke it down by milligrams of protein. Uh, so like for peanut, there's like 11 options, uh, you know, for dairy. There's like a dozen options and, and so on and so forth. If we want to know roughly how much protein they're getting, that's equivalent to what they were getting before, we can go down the list and say, let's try X, Y, or Z, or try this and just give them choices or rotate it. Maybe do this one day, do that the next day. That's the other thing is the rotation. If you switch up the foods,
Amanda Whitehouse, PhDYes,
David Stukus, MDThat helps a lot too.
Amanda Whitehouse, PhDyes. There's not many things I would want to eat every single day at the same time, aside from chocolate, which doesn't work for a lot of these kids hiding the dose in chocolate, so that's a great point.
David Stukus, MDUh, I, the other thing too is like for families out there, I've seen some interesting protocols where they're having kids eat like, I don't know, like 40 peanuts a day. And it's kinda like, well, what are we doing here? Why? Like, like, that seems a little excessive. What are we going for? So just being thoughtful about what's the purpose of doing this in the first place. There's really good evidence that shows even if you desensitize to like 300 milligrams or one peanut, which is what the FDA approved treatment Palforzie goes to, that's gonna protect you from like, more than 95% of accidental ingestions. It goes back to again, just being thoughtful about why are we doing this? What level of maintenance do we need to achieve, and what level of protection does that equate to?
Amanda Whitehouse, PhDThank you for me mentioning that. I'll find that paper and I'll put it in the notes for people if they wanna look at that and maybe take it to their doctor and talk about what options are appropriate for their child, for their dosing because if you are doing that ahead of time in preparation versus scrambling, 'cause your child won't eat it today and you're at the store trying to get the thing tonight for the next dose, it's obviously a different, feel and approach to having some of those ideas in advance.
David Stukus, MDAbsolutely. Yeah, it's been so helpful.
Amanda Whitehouse, PhDThis is a tough question maybe for some people listening, some considering some who have been in those shoes. What do you say to the people who, who did try, they invested a lot of time, probably a lot of money and miles on the car driving and it just wasn't for them, and they discontinue. Is it still worth the try? How do you handle that?
David Stukus, MDYeah, absolutely. There's no wrong answers, right? It's, these are all lived experiences and we do the best we can with what we have at the time. And you know, I say, listen, maybe your child's not ready for right now. That's okay. There's nothing wrong with that. Um, you know, think about what you learned through this experience. You actually watched the meet what they were allergic to for all that period of time, and it didn't harm them. Take that, learn from that. Like think about that next time you're worried when you go to get ice cream. Or if you're worried about invisible protein on some spatula or something like that, now you know what this looks like and you know what they can tolerate. It's all good. It's all bonus at this point. I do see people transition, especially now that we have omalizumab available for therapy. And so there's a lot of folks that will transition to that because they'd rather get an injection every two or four weeks and have to eat the food every day.
Amanda Whitehouse, PhDYou mentioned at the beginning the possibility of combining that with the OIT.
David Stukus, MDYeah, that was the latest iteration of the wonderful clinical trial, the groundbreaking clinical trial that demonstrated for all of us, as one of many that, you know, omalizumab can increase your threshold. If you were to start treatment with omalizumab. First for several months, that then helps decrease your risk of reacting to very small amounts of the allergen. So it makes oral immunotherapy better tolerated and also safer over time. And then the theory is that then you can put them on a maintenance dose of the oral immunotherapy, and then if you wanted to stop treatment with omalizumab, that you would then maintain a level of desensitization because with oral immunotherapy. That's actually changing your immune response. You're shifting from an IgE allergy response to an IgG protective response over time. It takes time to do that, but that's what desensitization does. We do that with allergy shots for venom and for in inhaled allergens. That's what SLIT does. It's all the same, but with omalizumab. It's sort of a bandaid. So while you're receiving treatment with it, it binds the IgE to make it less reactive, but once you stop treatment, it's out of your system and you go back to being exactly as allergic as you were theoretically. So the OIT is the long-term desensitization that actually changes the immune response. It's important to note that as of right now, the FDA has only approved omalizumab for use in conjunction with strict avoidance. a lot of what we do with medications and treatment that is outside of what the FDA recommends, but that's important I think for insurance approval and things like that. So that's a conversation with your local friendly allergist, but I just had to throw that in there as well.
Amanda Whitehouse, PhDI appreciate you clarifying because those of us who aren't working on the insurance side and billing for all those things, don't think of that ahead of time. Right. It sounds like off-label, that's what a lot of people are excited to use it for, especially those who are highly anxious about the process or, you know, really feeling that they're very sensitive and that they need that extra layer of protection.
David Stukus, MDYeah. If you do it long enough and I have the privilege of helping to educate my colleagues and peers about these different things. You can sort of recognize ideal candidates for either option or for both options, or less than ideal candidates. It's like a little mad lib scenario. If they have these features, they're probably a great candidate for OIT. If they have these features, they're a great candidate for omalizumab and vice versa. With the experience and time, you can start to see those nuances and tease it out and help families come to the decision that's best for them.
Amanda Whitehouse, PhDYeah. Is it too tricky for you to try to explain to us who that is and what it looks like for each of those categories?
David Stukus, MDYeah. Let's start with omalizumab. If you have an older child who's less likely to develop tolerance and they're allergic to multiple foods, or they've demonstrated that they do react to very small trace amounts, including anaphylaxis, and they also have comorbid conditions like asthma. rhinitis, then we're treating the whole patient. So omalizumab can protect them from all of their allergens, and it's also gonna be a great treatment for their environmental allergies and their asthma as well. So that's where just making them feel better and giving them that level of protection. With oral immunotherapy, that's a little more challenging when you have multiple foods that you're allergic to. It can be done. Um, but it's usually gonna be a little more successful when you start at a younger age. And if it's something like a peanut or a tree nut, they're less likely going to outgrow and they haven't developed those taste aversions, things like that. Oral immunotherapy is much more successful when they don't have those truly severe persistent asthma, allergic rhinitis, eczema. So if they don't have those features, they're gonna be a little more successful with OIT. I hope that gives you an idea of like two different patients that we're describing there.
Amanda Whitehouse, PhDDefinitely. That's helpful. Thank you. I think people really do get stuck in, you know, they hear something or they know someone who did it and they think that's the only way that it goes. That's the only possible route. And there obviously are many options and many different factors that influence it, so I think it's really helpful for people to hear you talk very calmly and confidently about all of these possibilities. Right.
David Stukus, MDYeah. Well, thank you. Um, no, I, I hear this from families too. They say, oh, I, you know, I, I talked to my neighbor and whoever, who's on this treatment and what do you think? Is this good for me? And I never tell people like, it's good for you or bad for you. Sometimes they ask me the, the dreaded question of, what would you do if it was your child? Well, I have a child. My, my son is 15 and a half. He's allergic to Caius, pistachios. If there's anybody that could treat him, you'd think I'd be the one. And we gave him these choices and he said, you know what, I'm just not gonna eat it. And I'm like, you know what? That's great. That's your choice. I have no problem with that. And he's doing great. You know, he is like gone on on trips with his school to Europe on his own and navigated that and he's thriving, but that's the right choice for him and for our family. That doesn't mean it's the right choice for another family.
Amanda Whitehouse, PhDThat's a good point. Thank you for sharing that. It's a lot to consider. It's a big life change, and it impacts us either way, no matter what decision we make.
David Stukus, MDYeah, and you know, just if there's one thing I can impress upon everybody out there, like of all the families that I've worked with, once you are comfortable with your decision, that's all that matters. That's all that matters if you're okay with it. Like I said, I, I have so many families that they're fine avoiding it. I love it. I tell them that I think you're doing a great job. And sometimes I say, do you think we should be doing something else? I'm like, actually, no. You're thriving. You're actually living great example of what it's like to live with food allergies, with very limited restrictions, as long as you learn how to avoid what you're allergic to and just be prepared and that's great for them.
Amanda Whitehouse, PhDYeah. Well, and as you illustrated, the other part of that that I say to the families I work with is you can also change your mind at any point. It's okay if this is what you're deciding for now, based on where things are at at this moment in time. And if things change, we make new decisions. Right.
David Stukus, MDOh yeah. I tell everybody like, these treatments aren't going away. Like, not like they're gonna disappear if you, if you wait a certain period of time. We can revisit this whenever you want. So go home and think about, think it Over. Let me know what questions you have. I'm always available should you have any questions that you wanna run through. And, um, we'll go from there.
Amanda Whitehouse, PhDAbsolutely. What didn't I cover? That was so much information and I appreciate it, but you know better than I do. What else people need to know?
David Stukus, MDUh, be cautious if you read about these miracle cures out there. I've been doing this long enough that I've seen over a dozen variations of this. If there was a cure for food allergy, we'd be reading about it in the New England Journal of Medicine, not from somebody's website or from anecdotes from the people that are spending a larger amount of money to. To get that treatment. I get it. Like we all wanna do what's best for our kids and if you read about some Miracle Cure, why wouldn't you wanna do that for your child? But I just want to recommend caution 'cause this is an area that is really, really prone to that sort of snake oil and false claims that are out there. So I just wanna throw that in.
Amanda Whitehouse, PhDThank you for that reminder. It is easy to get that hope and get sucked in. I think before we wrap up, would you just tell us what's your favorite part or the most rewarding part of doing immunotherapy with your patients?
David Stukus, MDUh, this goes back years ago, after the first six months we started and the first holiday season when they came in for follow up. All the families were just, they were like, oh my gosh. It was so much less stressful. We didn't have to worry about explaining to our relatives, and we just kept an eye on them. We read labels. We didn't have to worry about if they accidentally picked something up off the floor or whatever. It was just, they were able to enjoy the holiday gatherings for the first time. Those are the stories that we get. And now it's vacations. They're traveling internationally. Going off to college, whatever it may be, it's just peace of mind. And that's fantastic. It makes me feel so happy that we're able to offer that to these families.
Amanda Whitehouse, PhDYeah. Well, thank you. Thank you for doing that. Thank you for sharing it with the masses of us who get to listen to you on different platforms and, and learn from that as well. We really appreciate all that you do and all the doctors who are out there trying to give us all these options.
David Stukus, MDYeah. Well, thank you again for having me. It's been a pleasure and hopefully you'll have me back again.
Amanda Whitehouse, PhDI sure would love to. Thank you.
David Stukus, MDThanks.
SpeakerAs we wrap up today's episode, here are your three practical next steps if immunotherapy is something that you're considering. Number one, if you don't already follow Dr. Stukus on social media, make sure you find him at Allergy Kids Doc. He and his colleague, Dr. Farah Khan, who was just on the show and who you can find @farah.khan.md are over there at Nationwide Children's Hospital, sharing good evidence-based information and making sure they keep us all up to date. Number two, if you are considering or preparing for OIT, consider everything that Dr. Stukus has shared with us today, not just the medical information. Make notes on things he might have mentioned today that might be worth discussing with your family or with your doctor. And number three. If you feel like you could benefit from some extra support around navigating all of this or making your own decisions, you could follow me by subscribing here on the podcast, on social media, at the Food allergy psychologist, or on my website, the food allergy psychologist.com/connect. That will get you to my newsletter signup, where you'll receive email updates on my upcoming workbook. It is called From Fear to Freedom, A workbook for Navigating Allergy Immunotherapy. It will be available in June, wherever you buy your books.
SpeakerImmunotherapy is a process and thoughtful preparation makes that process steadier, safer, and more empowering. Thank you to Dr. Stukus for bringing such clarity and helpful information to this conversation about it. And thank you to you for listening and I'll talk to you next week. 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.
