Food Allergy and Your Kiddo

What ChatGPT Thinks Parents Want to Know About OIT

• Alice Hoyt, MD

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In this episode, Dr. Alice Hoyt discusses oral immunotherapy (OIT) for children with food allergies, addressing common parental concerns about safety, the treatment process, expected outcomes, and emotional support for children undergoing OIT. The conversation highlights the importance of understanding the risks and benefits of OIT, the practical steps involved in the treatment, and the emotional aspects of managing food allergies in children.

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This podcast is the official podcast of the Hoyt Institute of Food Allergy. Information on, within, and associated with this site and Food Allergy and Your Kiddo is for educational purposes only and is not medical advice.

SPEAKER_01:

Hello and welcome to Food Allergy and Your Kiddo. I'm your host, Dr. Alice Hoyt. Thanks so much for joining me today. Um, today's episode, kind of different. I asked Chat GPT, what do parents want to know about oral immunotherapy? Like, super interesting, right? A lot of what I do these days is oral immunotherapy, also sublingual immunotherapy, so that kiddos who have anaphylactic food allergies can begin to eat the food, with the end goal being one, get them to bite safe, meaning if they were to accidentally take a bite of something that contained their allergen, they wouldn't have a reaction. Or really the big goal is to freely eat the food. And a lot of kids, we can get them to freely eating the food. And we'll talk about that. So, what does Chat GPT think that you as a food allergy parent want to know when it comes to OIT? So these are the top three. And then you I don't know if if you've worked a lot with Chat GPT, but it's it's AI. So it it's trying to like get into your brain um and understand you and like how you understand you and meet you where you are, much like we as humans should be doing whenever we're communicating with somebody. And and definitely what I try to do when I'm talking with families, right? Is try to understand where they're coming from, what they're thinking, so that I can meet them where they are and we can walk together along this journey. And so, what are those top three questions? Is what I said. I said, what exactly did I say? I say, what are the top three questions parents ask about oral immunotherapy for food allergies? Okay, so what I'll do is I'm gonna say what it said, and then I'm gonna say like whether or not I agree that these are commonly asked questions. Um, so let's let's go. Number one per chat GPT. Is OIT safe? And what are the risks? Yeah, I think that's definitely one of the top three questions that that parents ask. And then chat GPT gives a lot of parents want to understand likelihood of reactions, severity, long-term risks, and how do you keep your child safe? And why this rises to number one per chat GPT is that safety is always the first hurdle. And parents want reassurance that OIT is a thoughtful, evidence-based process and not giving them what they're allergic to without a plan. Wow, this Chat GPT thing, y'all. Okay, so I agree this is absolutely one of the most commonly asked questions, the most commonly thought about questions is is OIT safe? And one of the reasons it's it's like the top question is because the top priority of any parent is to keep their child safe. And as you know, when it comes to parenting a child with food allergies, you've been told likely, unless you were very recently diagnosed in a relatively advanced food allergy practice, you were told your child needs to strictly avoid this food. And in some cases, families have been told that their child absolutely has to avoid the food. They could have a life-threatening reaction. And while that's true, when in many cases that's true, because anaphylaxis, just because you have anaphylaxis, a mild reaction one time doesn't mean the next time that it's necessarily going to be mild. But really, when it comes down to you're told for either, you know, a short period of time or maybe even for years, like your child needs to strictly avoid this, or it could severely hurt them, then it's hard to kind of hear, hey, we're gonna give your kid oh just a little bit every day. You're gonna give it to him, I'll give it to him in the office once, and then you're gonna give it to him at home every day. And then you're gonna come back in a few weeks, and then we're gonna increase that amount. And that is very jarring. It can be very jarring to families because for so long you've been told, we're going to strictly avoid this because it can hurt my child. And then the whole question, depending on the age of your child, they have been internalizing for weeks, months, years, whatever the case may be, that the food could hurt them. So then they start thinking, what are the risks to this? And then, okay, so Chat GPT also brought up short-term, long-term risks. And with OIT, there are absolutely risks of having an allergic reaction. Um, that's probably the most common risk, right? Um, or the most common adverse reaction we see is that a kiddo will react to the dose. I will say that when I see on social media people saying my kiddos reacted 26 times to their OIT, um that means that the OIT needed to be adjusted 25 times ago. Um, because really, if OIT is being done correctly and well, we're not having reactions like that. Really, OIT, the kiddos shouldn't even know there should be no adverse reaction if we're doing it well, if we're meeting the kiddo's immune system where we need to be meeting it. So while there is that risk of having an allergic reaction, OIT has come a long way. We have good protocols to start the OIT protocol in a kiddo well below what's called their reaction threshold, meaning it's well below the point at which they're going to have a reaction. We start the dose there, they take the dose every day. That is teaching their immune system to tolerate that and their reaction threshold is going higher so that then we can go up and their tolerance is going up as well. It's very cool. It's amazing to see. It's amazing to see. So then what are the long-term adverse or you know, um uh potential for adverse reactions or side effects? Right now, we think maybe 5% of kiddos develop what's called eosinophilic esophagitis or EOE, which is kind of like eczema of the esophagus, when they start OIT. And then when we stop the OIT, that EOE goes away. Sort of a more advanced approach to it is if we start noticing some symptoms, like a kiddo is maybe having some reflux or belly pain with their dosing, then, or spontaneous vomiting, like that's that's always a red flag for EOE, whether you're on OIT or not, then we'll we'll really pull back on the OIT dosing. We'll we'll decrease the amount that a kiddo's on, and we won't updose for a few months, slow it down, maybe start an acid blocker medication. Point being, to get the diagnosis of EOE, you have to have an endoscopy, which is a sedated procedure, and we don't like to sedate kiddos if we don't need to, right? Um, and we don't like to do procedures if we don't need to. Plus, we as allergists don't even do those procedures. We have to collaborate with our local gastroenterologists to do those procedures. And ideally, a pediatric gastroenterologist who's well versed in in OIT and in EOE, I'm very blessed to collaborate with some really awesome ones here. Um, so those are things that we think about of is OIT safe and what are the risks? And so I agree with you, chat GPT. That is that is a good number one. Okay, what's number two per chat GPT? What does the process look like and how long does it take? Okay, yeah, yeah. I'm down with that. Yeah. So the first one was about safety, and now this one's like, okay, practicality. Um, like, what does this look like? How involved in that is this? Um, and yeah, OIT can be very involved. So OIT in many protocols, you're gonna come into the office. You're gonna plan to be in the office for your first dose. If you're doing a single dose start, meaning your child's just gonna have one dose and that's their starting dose, then you'll probably be in the office for about two and a half hours because the allergist will probably dose, give your kiddown like that little bit of peanut butter or that little bit of egg white or whatever the allergen is, and then observe for two hours. And the reason we observe for two hours at that start appointment is because most allergic reactions, if they're going to occur, anaphylactic reactions, they will occur within two hours. It's usually in under an hour, but we want to be extra safe and say, okay, we're gonna watch you for two hours, make sure you tolerate it. And then the kiddo goes home and every day takes that dose, comes back no sooner than two weeks later, most allergists do two weeks, no sooner than two weeks later, and we go up on that dose. Um, and to put it in per into perspective, um, a peanut has about 300 milligrams of peanut protein. Depending on the kiddo, we might start at three milligrams of peanut protein. Or if they're younger, a lot of younger babies, they can tolerate higher start doses because they have a lot more um residual tolerance from their fetal immune system. When I've I've talked about this before, when babies are inside of mommies, their immune system is a very tolerant immune system. If it wasn't tolerant, then it would attack mom, mom would attack baby, it would be very bad. And so they still have some of that residual fetal tolerance. And they can usually start it at higher doses. So even sometimes 16, 20 milligrams, sometimes even higher than that. But for the most part, we start a few milligrams. And how we can do that is with pulling up a small amount of peanut butter with a little 1ml syringe. You know how like when when your kiddos are babies, or if if you're listening and your kiddo is a baby, oh um, then you use those little syringes to give them Tylenol and Motrin. Um, same thing. You can use that to draw peanut butter, draw egg white, whatever the case may be. Um so you can give them really tiny amounts using real foods. And that for a long time has been a point of contention of, oh, we should only use FDA-approved products to treat food allergies. Um, the only FDA-approved product to induce tolerance when it comes to anaphlactic food allergies is Pauphorsia, which is an FDA-approved defatted peanut flour. It's the predose capsule. You open up the capsule and you mix it into applesauce or whatever. It was initially approved in 2020 to start for kiddos ages four up through 17. And then a couple years later, it got approval down to age one. What we know as allergists is that as soon as a kiddo is diagnosed with food allergy, we really should start them on treatment. Um, pending the family is in the right season of life. Because per chat GPT's question here, number two question, what does the process look like? How long does it take? If we're doing updoses, and I started this like five minutes ago when I was talking about the process, you'll come in, that's kind of a long appointment, that first appointment. And if you are using palphorsia, then you'll do what's called an escalation day, which takes a few hours more than that, and you do multiple doses, yada, yada, yada. Um, but then it's it's palphorsia. I think you have to come back the next day to do the three milligram dose. It's very kind of like it's a little bit too intense. I have a whole um blog post on palphorsia that we'll link to in this, in this um podcast. So long story short, once you get started on OIT, then you can expect 10 to 20 on average updoses. A lot of times updoses are done in the office. I will say that since COVID, some of my colleagues had converted to doing some patients, um, actually doing virtual updoses. So I actually started doing that in my practice um over a year ago with select patients who I think it's a very low risk that they're going to react. And it's been amazing because the families are, they don't have to, right? They don't have to travel. And I have some patients who travel a long way. So they don't have to travel. Um they can do it in the comfort of their own home, which can go a lot, a lot better, right? I mean, my office is fun, don't get me wrong. We try to make it a very comfortable experience. Um, but not all offices have sort of the luxury of being like that. Some are more the traditional sterile ish clinic um look. Even some of the children's hospitals, right? But you know, if you could do it, be in your house and do it. I mean, hello, right? So it can still, though, be every other week. We can stretch it out to every month. It's really kind of it's slow and steady, and it's not a race when it comes to OIT. I mean, I've seen very low doses for a very long time drive allergic antibody numbers down, and it's just really amazing. But anyway, okay, so how long, what does the process look like? And how long does it take? If you're updosing, say 15 updoses every other week, 30 weeks, and that's if, right? Because 15 times two every two weeks, 30 weeks, that's assuming like your kiddos not getting sick. In this age group, especially like our younger kiddos, like they get sick. If you're sick, you're not going to be, you're not gonna be dosing. And then if you're sick for a few days, we're probably gonna back up your dose and then get you back onto your dose. And then I like my patients to be very stable on their dose for at least seven days before we updose them. Ideally, like 14 days, right? But um, at least seven days that in the last week you have been on your dose and you have not been sick. But it has been really great to be able to put some people, do some people virtual and and really just try to meet families where they are with what their needs are, right? Because this, this is a medical process, but this has to fit the the family's the family's season of life. And some families are not in the season of life for this. And that's when slit can be a really great option. And I've seen slit do really amazing things too. Um, and so ChatGPT is also asking daily home dosing routines. Whenever you're dosing OIT, um, you have a safety window because if you're um if your kiddo is having an increased heart rate or fever or anything, raising the body temp, raising the heart rate, um, if they have uh a GI bug, they're different things that can lower that reaction threshold. And so we don't dose when that's going on. We don't dose when a kiddo is really hot or, you know, running all around and stuff. So typically one hour before the dose and two hours after, they're having quiet play. Um some patients dose in the morning, so that one hour before they're sleeping, right? And then they get up, eat breakfast, take their dose, and then they're hanging out before they go to school. I do have my patients observed by the OIT trained parents, caregivers, whoever, um, for their entire dosing window. And a lot of parents dose it at nighttime too, like after after school, either snack time or at supper time, once kiddos calm down from whatever their after school activities are, they'll dose with dinner. And then, you know, they're not really getting revved up before bed anyway. They're doing other activities. Um, so that's kind of how a lot of families dose. And then after all that updosing, they get to maintenance. They can be on maintenance for a few years, depending on the protocol. Some protocols now you can kind of keep updosing. I've adopted a protocol to where I'll keep dosing, updosing, but every month in some younger kids to try to get them to freely eating the food food sooner rather than later. And it can kind of shave off six to 12 months sometimes, which can be really life-changing for families, right? Um, and then once a kiddo, once we think a kiddo can eat a full serving size of the food, um, just like any other food, not have a reaction, we'll do an ingestion challenge. And as if they don't react, meaning they have a negative challenge, um, not a pass, we don't do pass fail, right? They can't study for this, um, but they have a negative challenge, then we move them into the phase that I call tolerance preservation, meaning now we need to keep the food in the diet to continue the tolerance, preserve the tolerance, grow the tolerance that we've developed to the food while we take away some of these guardrails, right? Like while we take away that safety window, but they still have Epi available, they're only eating the food with their parents. Six, 12 months later, we reassess, you know, how are they doing? Are they are they eating it still? Like they need to be eating it um multiple days a week, a good serving size, multiple days a week, because we want to continue to grow that tolerance. Um, so that's what the process looks like. So good job, ChatGPT. And of course, you want to ask your OIT allergist about all these questions and what what their protocols and process looks like. Um, and then number three, what outcome should we expect in will my child be cured? So I mentioned earlier there's sort of two goals with OIT. One is to become bite-safe, meaning if you accidentally, if your kiddo accidentally had a bite of their allergen, they wouldn't have a severe allergic reaction. And I will say in most cases of OIT, we get there. The second goal is to freely eat the food. And I will say the sooner we start OIT, the more likely we are to get there. And especially in like the preschool age, I will say about 80% of kids get there. And it's amazing because you see a kiddo who, you know, a lot of times we'll do an ingestion challenge before we start OIT. If the history is kind of like, I don't know if you're allergic or not. Even if the tests are positive, like not all positive tests mean you're allergic, right? You can be sensitized, not allergic. I have a podcast on that too. But so we we don't want to, we don't want to commit a child to a diagnosis they don't have, meaning we don't want to say they have a food allergy if they don't. And then we don't want to give them a treatment that they don't need, right? Especially something as involved as OIT. So oftentimes we'll do a challenge if the history is like, hmm, maybe they're not allergic. And a lot of times these kids have a positive challenge, meaning they have a reaction. And so then we start the OIT. And to see them go from like having this just a tiny amount will cause a reaction, to then we're able to start below that amount that they caught that caused a reaction and increase over time and get them to where they are literally wanting to eat more of their allergen. It is really amazing. Um, so we never say that we're going to cure you. Um, and I never say, oh, we can, this is not gonna be a problem at all. Um, every child is different. And even though the odds are ever in your favor, when it comes to doing OIT, not not every child is going to get to freely eating. Um, do I think it's possible over time to work with the immune system and it's gonna take a lot more than a couple years to get them to freely eating? I do, but it's not always gonna be simple. It's not always gonna be as simple as, okay, we're gonna go to all the updoses, and then a few months after that, we're gonna check some labs, they're gonna look great, and we're gonna challenge, and we're done. Um, some families have that experience, and it's amazing when they do, but not all families do. Um so, what outcome should you expect? You want to talk with your allergists about that, about what they are seeing. In kiddos like your kiddo. So is your how old is your kiddo? What are your kiddo's numbers? What um other allergies, food allergies, or what other allergic conditions too does your kiddo have? All that plays into how well is your kiddo's immune system going to respond to therapy and how much are we going to need to adjust therapy to meet your kiddo's immune system where it's at? Um and why we don't say cured is because a cure is when you have a condition, you apply a treatment to the condition, the condition then goes away, and then you remove the treatment and the condition doesn't come back. Now we know that if we desensitize a kiddo, put a kiddo through OIT, and then have them stop eating the food, very strictly start avoiding the food, that their allergy can come back. And so the goal with OIT is to get that allergic reaction to go away, but to keep the food in the diet. Because we also want to normalize this. We want kiddos to be able to eat whatever they want to eat, right? And not have an allergic reaction from it. And so we're never taking away the treatment. So we could never really say that it's a cure. And we know that in studies where they do take away the treatment after a few months and have them strictly avoid it, that a lot of times when they rechallenge them, like say you desensitized a kiddo, got them to eating a half a teaspoon or a a full amount of full serving size or whatnot, and then you have them strictly avoid that allergen for six months. A lot of those kiddos, when you challenge them, when you give it to them again after six months, after they've been strictly avoiding it, their immune system hasn't seen it, then they're going to have a reaction to it. So that's never our goal. And I don't do challenges like that. I don't get families, that's a clinical thing, right? Like it's it's interesting for research to know that that happens. But now that we really know that happens in clinical practice, I'm not gonna do it's called a sustained unresponsitive challenge. Like, I don't do that because I just want my kids to be safe, my patients to be safe, right? Um, so why am I gonna like work with the family and do all this work and they're doing all the work, right? And it's like, okay, let's hold it and let's see. What a cool academic question. Like, no, just we we got them to tolerance preservation. Let's preserve that tolerance and make their life super amazing and normal and no more worrying about all this food allergy stuff. Um, okay, so love Chat GPT. Um, so then it says, oh, bonus, the quiet fourth question parents often ask later. How do I support my child emotionally through this? Okay, I love that question. Um, and if you've listened to my podcast, then you um I I sprinkle in often, well, I guess not often, but I sprinkle in that in my practice, I have a licensed therapist who has been with me since I started my practice, the Hoyt Institute of Food Allergy. Um, because at with my time, I trained at UVA. I was on faculty at Vanderbilt, I was on faculty at Cleveland Clinic, had the amazing opportunity to help launch their food allergy center with the amazing people there, great leadership there. Um and what I learned really along the way is that allergists can provide the most advanced treatment options, diagnostics, but if we're not meeting a family where they are and helping them overcome the stressors, the anxieties, identify triggers for those situations, then we're not gonna be as successful with our therapy with the child as we could be. Um, and so if ChatGPT is getting to how do I support my child emotionally through this, that is such an important question. If if it's a baby, if your kiddo's a baby, then your kiddo doesn't really know. Like they're just gonna do what you tell them, right? Or they don't they don't really know. Um, but then in preschool, they've been hearing like this food can make me sick. So we have to talk with them, meet them where they are, both parents and I, as their doctor, and our therapist is is great with this, right? Um, but not all allergists are gonna have therapists, right? But there is the Academy of Food Allergy Counseling that my nonprofit Code Anna, um, we acquired their like directory last year. We're supporting this whole initiative to educate therapists on food allergies so that they can better work with clients who have food allergies or parents are managing food allergies. Um, so there are so you should check out AFACT Academy of Food Allergy Counseling if you're interested in that. But again, the quiet fourth question here is how do I support my child emotionally? You have to meet them where they are, you have to talk them through what you're doing. We never trick. So we're never like trying to sneak something into a kiddo and not tell them what's going on. Even from a young age, two years old even, we're telling them this is what we're doing because this is going to help make your immune system strong. Um, and you only do it with mommy and daddy. So we're using that type of age-appropriate language and working with them so they're growing an understanding of what we're doing. Okay, so what do you think? Do you think Chat GPT um appropriately or accurately, I should say, captured the top three questions parents asked about OIT for food allergies? I think it did a pretty good job. Um, yeah, I'm I'm scrolling back through it again. I think it did a pretty good job. Um, it's definitely consistent with what I see in my practice and what um my patients are asking about clinically what to expect with OIT. Um, but you tell me. So drop a message to us, go to foodallergy in your kiddo.com. You can join our mail email list and just reply to that. Um, or if you're watching on YouTube, drive, drop in the comments um, or go to uh at Hoyt Food Allergy. I'm still getting used to all this social stuff, um, on Instagram. And uh yeah, drop us, drop us a message, comment on a post, and uh I would love to help answer what your questions are. Um and would also love to hear if you think Chat GPT is is is is doing a good job here. Okay, have a great day.

SPEAKER_00:

Thanks so much for tuning in. Remember, I'm an allergist, but I'm not your allergist. So talk with your allergist about what you learned today. Like, subscribe, share this with your friends, and go to foodallergyandyourkiddo.com where you can join our newsletter. God bless you and God bless your family.