Mindset and Mental Health in OIT with Prof. Adam Fox

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.

Adam Fox, MD: 0:00

I really feel that there's something to be gained by everybody going into OIT seeing a psychologist and for some of them having a number of sessions. One of my jobs at that first appointment is to filter out and identify families where actually, we only need to go so far with this conversation now, actually, this is never gonna happen until we've addressed these other issues. And that's to get the psychologist involved. I have to say, most of'em come out the other end of that in a really good place to then progress with treatment.

Speaker: 0:24

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

Amanda Whitehouse, PhD: 0:45

Professor Adam Fox is one of the most recognized pediatric allergists in the UK, a trusted media voice, a clinician who has shaped international conversations about food allergy care. But what makes his perspective especially valuable, is the way he thinks about patients and their experience. In this season, we are exploring treatment options for food allergies. We've talked about what oral immunotherapy or OIT is, how it works, how to weigh the expanding menu of treatment options, and today's conversation is different. This episode is about the importance of mindset. It is about the guilt parents carry when they wonder if they started too late, how we frame side effects so that they do not become panic triggers and worsen our reactions, and it is about why Dr. Fox believes psychological support should be a routine part of OIT. Dr. Fox, i'm so honored to have you here on the Don't Feed the Fear Podcast to talk about all things immunotherapy, but especially mental health aspects of it.

Adam Fox, MD: 1:41

Pleasure to be here.

Amanda Whitehouse, PhD: 1:42

I think a lot of people are familiar with you, but for those who might not be, or for those who are here in the us, tell us about your background and how you ended up doing what you're doing now.

Adam Fox, MD: 1:52

Okay, so, well, I'm a Londoner, born and bred. I have no idea when I decided I wanted to be a doctor, I can specifically remember as a 16-year-old at a parent's evening at school when my parents said, oh, why don't we go and go to the room where they're talking about medicine and me saying, no, I'm not really interested in that. And somehow in the next two years I decided I wanted to be a doctor and went to medical school. Probably most of the time through my training, I wanted to be a pediatrician. I always had an interest there. Did pediatrics as, as, as one of my rotations, thoroughly enjoyed it, really wasn't sure what I wanted to do or whether I wanted to be a specialist pediatrician or just be a general pediatrician.

And, and if you wanna be a specialist pediatric, something. Whether it's a cardiologist or a gastroenterologist or allergist, everybody has to start with general pediatrics first, and then during that period you make that decision. And had a really interesting experience during those first two years where I started to notice that there is a group of children who I was seeing lots of times in lots of different places. And so as part of that general training, we'd go to different specialty clinics. I'd go to pediatric dermatology clinics and gastro clinics and respiratory clinics and general pediatric clinics. And there were these kids who were popping up. And this is, you know, we're talking early two thousands. There was essentially one pediatric allergist in the UK and the only reason there was there was even one is because he had trained in the US and come over and essentially bought the specialty with him, and that was professor Gideon Lack who ended up training under but.

What I realized was, was sort of the thread that ran through the care that these kids were supposed to be getting was, was allergy. And that there were kids with significant eczema who were in the dermatology clinic for that, who were showing up in the, in the gastro clinic because that's where food allergy was being managed. And were also showing up in the respiratory, in the ENT clinics because of their respiratory allergy. And what they were getting was just completely fragmented care. Now, as the guy who was sort of moving around different clinics, just sort of, you know, watching and helping out. It was often me seeing them in one clinic and saying, well, got food allergist, but somebody needs to sort out your eczema. And we, we don't do that in the gastro clinic, so I better refer you to the dermatology clinic. And then guess who's there when they get to the dermatology clinic. It's the same, 25-year-old doctor who doesn't really know what he's doing. And I found this group of patients fascinating. And what was particularly interesting is that there wasn't really anybody who was offering them a proper home. There was nobody who was looking after these kids holistically.

So what Gideon Lack was doing at this, this very famous hospital in London, St. Mary's Hospital, was sort of pretty novel that he was bringing all of this together and seeing patients as an allergist and tying up all of these different aspects of their care. And as a consequence, they got a way better deal, although the waiting list was insane for kids to get into that clinic. When it came to making a decision about training in a subspecialty, although there wasn't really a training program in pediatric allergy, there was a training program in pediatric immunology, infectious diseases and allergy. And the allergy was very much sort of a, a bit of a side note that wasn't really what, what the program was about. I sort of signed up. But saying, actually no no, I wanted to do the allergy bit and that I would sort of organize my own training and, and spend time in Gideon Lack’s clinics and, and a couple of other clinics and different specialties in order to get the right training so that at the end of it I could call myself a pediatric allergist. And it was quite, it was, it was hard work to sort of make it happen because it wasn't an established training program.

And thank goodness we now do have one of those. As part of it. I also did some research and, and the thesis that I did was under Gideon Lack's supervision, so very much around peanut allergy and the underlying mechanisms of how you became allergic to peanuts. So the work was all about demonstrating that it was due to exposure via the skin and infants with eczema. That led to people developing peanut allergy. And that was part of, it's one of the parts of the jigsaw that led to what went on to be a bigger research program that Gideon was doing, which involved the LEAP study, which led to the better understanding that you can prevent allergy by early exposure to allergens.

And it's amazing over the, you know, over my journey and my career to be able to see how those discoveries have led to a, a, an impact on public health advice globally. And. Particularly lovely to see more recently data coming out from the US showing just what a big impact that's having that. There's been places where once that advice has been instigated and, and, and, and properly introduced, there's been a really big drop in, in peanut allergy diagnoses.

So after doing that research, I, I went and, and myself and in fact along with a number of colleagues who I sort of collected on the way we all went together and set up a new service at guys and St. Thomas', another big London teaching hospital, and established a new pediatric allergy service that, that ended up growing to become a very significant service. And here I am 20 years this year since I took on that, that first consultant role, that first senior role and now doing a little bit of a mix of a lot of clinical work. We've got our own center now that is really focused on food allergy treatment. So food immunotherapy, and still a little bit of research, a little bit of education stuff. Been involved a lot in clinical leadership. So one of my other hats is as chair of the National Allergy Strategy Group. Which is like a, a, essentially all the allergy charities and our specialist society together nagging and bothering and harassing and lobbying our government to just do better when it comes to provision of specialist allergy services, which is unfortunately still got a long way to go.

That was a very long answer

Amanda Whitehouse, PhD: 7:18

Well, there's a lot of information to squeeze in about how you got to where you are. Right? It's a long career so far. Like I said, I'm in the us A lot of my audience is in the US but we do have, I do have quite a bit of my audience in the uk, but how accessible is OIT for patients there? Because your healthcare system is different from ours and it sounds like similar to here. It's tough to access maybe for different reasons where you are.

Adam Fox, MD: 7:38

Yeah, I, I think I, I always have a slightly rose tinted view of US services and a year or two ago, I did a paper with Matt Greenhouse and, and Marcus Shaker and, and a few others where we did a sort of comparison and it was a bit of a wake up call for me because I was expecting it to be, isn't it awful in the UK? Look how amazing it is and how we should despise to how it's in the US to discover actually that there are enormous challenges around access in the US as well.

And that actually, if you go even slightly outside urban centers, suddenly the, the degree of allergy provision really drops off very, very quickly. That said sadly in the UK we, we are somewhere behind and, and as a specialty generally, we've been very, very late to the party and still don't really have a proper seat at the table amongst other specialties in, in, in pediatric allergy or allergy generally. So traditionally, a very small number of, of. specialists give you a flavor of that. There's probably about maybe 30 or 40 pediatric allergists in the UK. Maybe a couple of hundred specialist pediatricians with a, an interest in allergy, and that's it for a population of 65 million.

Adult allergy has got it even harder. Actually, there's probably no more than about 80 adult allergy specialists. So we are looking at, you know, maybe an allergist per couple of million people. And consequently that's reflected in, in very poor access to services. 90% of people with a diagnosis of a food allergy never see anyone beyond their general practitioner. So that means the likelihood of you ever getting access to things like oral immunotherapy, you, you either go private or the provision is very limited.

And if you're lucky enough to be at specialist teaching hospitals where some of these treatments are being offered unfortunately, the government funded national health services has not been as supportive as it should have been. So even though its approved products like Palforzia for peanut desensitization, it was never backed up with the resource for it actually to be delivered. So. We've barely seen, you know, barely a hundred kids in the UK have probably got their Palforzia treatment through the National Health Service, even though the, we were promised some years ago that it would be in the thousands every year, and it just hasn't materialized.

So it is really, really infuriating. It's a real focus of the work that I do around lobbying specialist services, but sadly, it’s go to find its place alongside being lobbying just for people to be able to get to any sort of clinic at all and to just get a proper diagnosis and a timely diagnosis and proper access to food challenges where they're needed and basic care. Not to mention, you know, what does require significantly more resource and things like immunotherapy, so. It's, we've got a long way to go. There has been progress made. You can find your way to the treatment if you are, you know, if you know where to look and, and, and you can afford it, which isn't how it should be. But at least it's better that there being no access at all, I guess.

Amanda Whitehouse, PhD: 10:28

Absolutely. I appreciate you laying that out for us because I think wherever people are listening it's important to acknowledge that even though it's great, we want to talk about it and raise awareness. It really is a privilege for anyone who, who has access to the doctors, who is able to travel and have the flexibility and the financial resources to pursue these treatments because they're scarce for a lot of reasons.

Adam Fox, MD: 10:51

Yeah, and I think also it, it's, it's often easy for us to think, oh, well, it's just awful here, but everywhere else it's fine. But that clearly isn't the case because. our clinic in Central London, we have patients that fly in from, from Ireland, from Denmark, from Bulgaria, so around Europe, from the Middle East or the Emirates. I think our furthest is Senegal. So there's people going a long way to find access to these treatments. Enormous respect to those families who are able to make the decision that they're gonna do that. And the staying power, because you know, is it's not an easy journey even if you live around the corner, but to be doing it when you've got all of that to add to it as well it's pretty inspiring that these people get to that.

Amanda Whitehouse, PhD: 11:29

Absolutely. And thank you too to doctors like you, those of you who are working to expand access and train other providers and get the word out about it is such an important piece of that. So thank you for that work too. Let's call out one more thing before we get deeper into the conversation. I want to touch on something you and I were talking about before we started recording that is coming to mind about how when we talk about research and when we talk about new developments, what it stirs up emotionally for a lot of people in the food allergy community. And when we're talking about immunotherapy and some other research on ages and what's effective and when, or early introduction that you mentioned earlier, it brings up a lot of guilt and shame and regret for families. So I would love for you to just touch on that before we move forward for those who might have that type of a reaction to listening to a conversation like this.

Adam Fox, MD: 12:16

Yeah, I mean this, this does come up a lot and, and I think the most common place that comes up in, in my practice will be the, the message is, is really out there that immunotherapy seems to work best in younger children. so I'll have families where they'll bring a a along a child who's, you know, seven or eight, and as we start talking about it and getting into a little bit more detail and they're asking about potential outcomes and either they already know or, or, or it sort of comes out somewhere and they'll say, well, would this have been easier to do? Would our outcomes have been better if we'd have done this a few years ago? And, you know, I've always promised myself I'm, I'm, you know, always gonna be honest and upfront with patients and tell them the truth.

But realizing that, you know, that's gonna have a big impact on, on being told. You know, however, sensitively I think I'm putting it, there's a, a real chance the way that's being received is you have done your child a disservice and you've missed an opportunity to have given them a better chance because you didn't do enough about it soon enough. Now, of course. That is never the reality of the situation. And in fact, it's an enormous credit to them that they've got to the point they have, you know, when the child's seven or eight because the vast majority won't ever get, as we know in the UK, won't even get past their, their, their family doctor, nevermind to a specialist and nevermind to a specialist who's able to offer them this treatment and discussing it and being pre prepared to put the hard yards in to go through with it.

So, you know, I, there is an element, you know, you realize of human nature. I, I can do my best to be as sensitive about it and chat through it and, and be as clear as possible because it isn't their fault. And often these treatments weren't available anyway, even if they had have known that they worked better or they wouldn't have had access to some reason. And sometimes it's just not the right time regardless, but it's human nature to just blame yourself, feel guilty, et cetera.

I make space to have that conversation because if, if I don't then raise that, the worry is is that that parent's feeling it, but they're not articulate sometimes they're very clearly articulate it and, and you know, that's good because it's out there and you talk about it. And, and, and I'd like to think I'm able to sort of, you know, convince them that actually they've, they've done a brilliant thing that they've got as far as they have. But if they don't, if they're sort of just quietly moving on. I'll often stop and, and say, you know, I hope you're not thinking that, you know, you've done your child any sort of disservice because you know, let's talk that one out because otherwise there's a real risk that they'll just sit with that for a long time and it, it will fester and become something un unpleasant.

Amanda Whitehouse, PhD: 14:37

Yeah, incredibly sensitive and aware of you. I appreciate that. And you know, in the context when I'm talking about it with clients, obviously I'm not medically recommending treatments, but what I want people to hear is that sometimes that emotional reaction that you're acknowledging will actually prevent people from making the decision that might medically be a good option for them because they feel, oh, it's too late, I feel defeated, or whatever the reaction might be. It's valid to feel that way, but we don't want you to make your decision based on that emotional reaction.

Adam Fox, MD: 15:04

Yeah, and I think one of the things I'm really clear with all of my patients about is that when we sit down to have that conversation is we are not making a decision now about what the right thing is to do. We're just chatting about it. We're, you know, gonna, gonna talk things through, but there's. You know, never a scenario because you get some patients, they come in and say, well, we wanna do it. How does it all? And it's like, no, no, no. We're gonna have to step back. I need to get to know you guys a little bit. You need to get to know me a little bit. We need to talk about options because for any child, and this is often, you know, an important sort of spinoff of that conversation about how I left it too late. It's, well, it, we don't even know that, that this is gonna be the right treatment for your child. just an option and for some families the right way to manage their child's allergy is to just carefully avoid it, and that's absolutely fine. OIT is not the new way of treating food allergies. It's an option alongside a number of others of ways to treat it.

And there's no quick decisions here. This is all about a journey. We talk about our shared decision making journey, and it sounds all very sort of, you know whatever. But it's, it's, the reality is that it, it's crazy to sort of jump into really big decisions when you're feeling emotional and overwhelmed, et cetera. And there has to be a period of reflection. There have to be really good supporting information resources for people to sort of, you know, revisit things and talk it through. And we always, and certainly this is the practice in the way that we are delivering OIT, there's always a follow up conversation. it's only when that's happened that anybody starts asking the question of, okay, are we gonna do this or not because we need to start thinking about the logistics. It's a failure on our part if anybody shows up on that first day to start treatments with any questions left, not absolutely sure that they're doing the right thing, because I think you've, you've almost lost before you've started if people are showing up in the first day saying, really know what I'm getting myself into, or I do know what I'm getting myself into and I don't really know that I should be here.

If I go back 20 years, the beginning of so when we first met, set up our specialist department and we were, we were very lucky, we were able to convince our hospital to allow us access to sublingual immunotherapy for things like grass, pollen and tree pollen. And, and we learned some very interesting lessons because the, the first year we were allowed to do it. The hospital gave us a budget to do about 10 kids, and we got the most ridiculously motivated 10 families who knew everything about it. And I think between the 10 of them, they didn't miss a single dose of that treatment. They were incredibly motivated, but were able to demonstrate this fabulous benefit to quality of life. They were raving about the effects of the treatment.

And so the next year, suddenly it went from sort of 10 families to 150 families, and we weren't properly prepared to deal with that enormous influx. And as a consequence, the counseling probably wasn't as good as it could have been. The understanding wasn't as good as it could have been. And I remember going up to the unit once and we had a child who was coming in just for the first dose, which is done under supervision and it's for grass pollen desensitization treatment that would help with their grass pollen related hay fever. And I remember the mum looking at me and saying, so once we started, when can we start eating peanuts? It was like, whoa, we really have a, we need to have a conversation.

And you know, you realize you absolutely have to invest a huge amount of time in all of this process before it starts. Otherwise, the potential for misunderstandings, misinterpretations, you know, we always separate out the conversation about these treatments from all of the other stuff that's going on because if you don't give it that focus, it just gets conflated with all the issues around their eczema, their hay fever. It has to be focused. You have to have time and space, and it has to be done properly over a period of time to get it right.

Amanda Whitehouse, PhD: 18:34

Yeah, especially when you have these conversations every day, obviously, but for a parent who's coming in, it's stressful. The child may not be cooperative and it's overwhelming to take in so much information and understand it clearly, so it's so meaningful that you're taking so much time to do that so carefully. Would you walk us through for OIT, what are the key points of those conversations that you're having in that process of making sure that everyone is on the same page and understanding what they're considering?

Adam Fox, MD: 19:03

Well, I would say that the first thing that we're doing is, is essentially answering two quite distinct questions and, and the first of those is, could we do OIT the second and unequivocally, the more nuanced question is, should we do it? And sometimes people are a little bit surprised by that because they're sort of thinking, well, we just wanna check we're suitable because of course we will then progress it. We do have to have that first conversation because, you know, we have to be absolutely certain, and certainly in the UK setting, as often as not, we don't get very far even through question one because we have a lot of patients who are quite significantly over diagnosed with allergists because the, the clinics they've been to are very defensive.

That's sort of become the nature of NHS practice sadly. If you are positive on the testing, they'll say when you. probably allergic, so you better avoid it because we don't have the resources unfortunately to bring you in and do the food challenges to clarify for sure. So we often have to do a lot of diagnostic work and often we are just de-labeling people who come to us for OIT when actually they're just not allergic in the first place. And that's win-win for everybody if they just don't need the treatment in the first place. Then making sure that they're well enough to have the treatment. So is there eczema adequately controlled? Is there asthma adequately controlled? So, you know, that takes up a lot of time and space. Through that conversation we'll also be talking about the nature and the process. Because, you know, as I'll be saying, you know, if, if, if we're gonna consider this as an option, you have to have a good understanding of exactly what you're getting into.

Some people will show up and they already have a very, very good understanding and, and, and they're very knowledgeable. Others will come in and say that they think they're knowledgeable, but actually they've just got a lot of misconceptions all bundled up together. Others will come in and say they know nothing and are clearly experts and they don't realize it. You get every possible combination. so there'll be a different amount of emphasis that needs to go on sort of that understanding of what they're getting themselves into. And then we sort of start merging that into that conversation about, well, should we do it? And that's where it starts getting much more nuanced and it, and it really requires us to understand what the patients really want, what their priorities are, what they're really there for, what, what's causing the anxiety.

And for a lot of families, when you push them, they'll say, because we don't want our child to die. And, and it's like, okay, we need to have a proper conversation about risk and about what the risk really is at the moment. Because if you are doing it because you don't want your child to die of their food allergy, then in a way, our treatments are always gonna fail because that risk was so small, thankfully in the first place, that this isn't the solution to that. The solution to that worry is really talking out what this level of risk is and how you can manage that risk and psychologically how you can manage that risk. And yes, OIT might end up being part of that, but if we just continue to go down this route saying, fine, let's just do the OIT so that we'll stop your child from dying of their food allergy, then we've done them a huge disservice.

One of the things I've always found fascinating about the job is the innumerable ways that a similar family can react differently and manage differently a broadly similar scenario. The way that people that otherwise in so many ways are so similar in the way they deal with the rest of their lives, yet one is continuing to go on holiday and eat out and managing a food allergy actually in a really, in, in a really sort of functional way that's really not limiting things much. And another with a very similar background will do the exact opposite, and they never go away. And they never eat out and they, and, and their child misses out on so many things because of that level of restriction. And it's all often based, when you drill down on it, on their learnings from sometimes very obscure places, either on the internet or, you know, experiences speaking to doctors that really didn't know too much about food allergies or watching stuff on the tele and all of those sorts of things.

And so it takes a lot of unpacking sometimes to work out what's gonna be the right thing to do. And as I always say to the patients beause in fact I had this exact conversation just a couple of days ago, and the mum sort of said, I don't wanna feel like I'm being sold this treatment. And I, I said, well, my job is sort of to talk you out of it a little bit and make sure that you've really thought about absolutely everything. And I'm not going to tell you what I would do if it was my child. Cause they'll often ask, you know, we'll often ask that. I'll be honest and I'll tell him what I would do, but I'm saying, but this is just me and I'm not you and you have, you know, different priorities and, and experiences and, and, and what I do. It might be the right thing for me, but it might not be the right thing for you. And I find that sometimes quite hard because sometimes as families where inevitably I sort of think I would, so do you know, especially in a younger child where you know the outcomes are really, really good. And, and you're sort of thinking, I so want you to do this because I think your child will not thank you if you didn't do it, and you wait. But we have to hold back from that. And you have to sort of say, well, look, you know, these are the benefits and these are the risks, and these are the alternatives. And they've gotta come to their own, own decision. And, and that's really important because as we know in so many other areas of life, you know, if people come to their own decision inside for themself. Yeah, I've appraised all that information. I've decided that this is what's best for me, and the guy in front of me has just helped me make that decision, but I've made that decision myself. They're gonna go into it with a much better mindset.

When we first opened to sort of desensitization, when, when Palforzia got its license in the UK, which was the lever by which we were sort of finally able to start offering this, and literally it's the day it got its license and what we found is that the first people that came out the woodwork desperate to sort of get on the program predictably, because this was treatment license for aged four to 17, were all the 17 and three quarter year olds who thought they were gonna miss their chance if they didn't get in and do it. But it wasn't really all the 17 and three quarter year olds who came forward, it was the parents of all the 17 and three quarter year old kids who came forward desperate for their child to have it. And some of those children were not interested, didn't want it, didn't know anything about it, and frankly couldn't care less. And we learned very quickly that if the child, if they're old enough to understand what's happening, if they're not on board, don't even bother. You know, the parents can wanna do it as much as they want, but if that child doesn't want to do it one way or the other, they, it, it, it won't work out.

And I think it's, from things like that that we've learned, you know, so much about how time spent at the beginning to make sure it's the right decision, it's the right thing for the family. And they're going into it, the positive mindset, expecting and wanting it to work, it's time well spent. Because if you don't do that, you're gonna pay for it on the other side anyway.

Amanda Whitehouse, PhD: 25:15

Absolutely. I've, I couldn't agree with you more from what I've seen in terms of the families where the parents are the ones really pushing it, not just older kids, but any child that's older to understand what's happening that's when things go very poorly. But you touched on that, and I have found that identifying what the child's goals actually are and working on that is a good part of getting the child in a good mindset. But how do you approach that when it's different or just in terms of starting this conversation we're having about the mindset and being both kids and parents in a good mindset to start?

Adam Fox, MD: 25:47

Yeah. Well, I always make a little bit of a joke of it, but I do always start my consultation by talking to the child, and I'm very deliberate in doing that. You know that that's intentional and from that first interaction you'll often find you'll get and, and you know, let's be honest about it. It's, you know, the teenage girls delighted. They'll tell you everything you wanna know and they'll engage with you and you'll have the conversation most of the time. The boys much less so, and they, you'll ask them a question, they will look at you completely blankly and then look at their mom and, you know, sort of and I'll say, and if you like, we can defer to your mum to talk about the first bit.

But I will continually go back and it's funny actually because I think the parents aren't really expecting it. I think the parents are often expecting the, the kids just come along for the ride and maybe the allergy test and that's it, but they're not there to take an active part in it. But I will keep moving things back to them and making sure that they're following it and they're understanding it. And actually that will eventually, and it takes different lens of time in different families will change the dynamic and then suddenly the parents will stop talking for their child and start. Asking them, well it is right that you feel this, isn't it?

For me that's a really important way of doing it. Because if you just talk past the child and to their parents, they'll go home and the child will either not have paid any attention and, and be none the wiser, or have said, well, you know, I don't really wanna do this. So the only way you're ever gonna get to the right places by involving them right from the get go. And that can actually be younger kids as well. We get some kids who are four five who've got a really clear handle on what's going on. And then will sometimes ask slightly frighteningly insightful questions at the end of it that you sort of think, wow, you really were paying attention and, and ask things that, you know, the parents hadn't thought of. And, and, and I love it when that happens.

Amanda Whitehouse, PhD: 27:24

What I have heard with the younger kids is often the logical misconceptions that they have that we wouldn't have gotten out of them if we didn't ask. For example, I've had a lot of younger kids and based on what we've told them, they know that if they eat peanut and they're allergic, that they have to use their epinephrine. So these kids assume that undergoing OIT means I go to the doctor, I eat the allergen, and then they give me epinephrine every time. Things that it would make sense that they would come to those conclusions that we don't hear if we don't ask them, you know, like you said, direct conversation to the kids.

Adam Fox, MD: 27:59

Yeah. And I will often ask a child, what do you think would happen if you ate a little bit of peanut and, and you get everything all the way up to, they'll look you in the eye and say, I'll

Amanda Whitehouse, PhD: 28:08

Mm-hmm.

Adam Fox, MD: 28:09

And, and it's like, wow, you know, these guys have been living their lives on an assumption that they will die if they have a tiny bit of peanut. So, you know, that needs a lot of unpicking, especially if you're gonna expect this child to then come in and just eat a little bit of peanut for you. That's gonna take a lot of work.

Amanda Whitehouse, PhD: 28:25

Yeah. Yeah. So what other misconceptions or nuances are usually necessary to talk about either from the child's angle or the parents? What else do you tease out?

Adam Fox, MD: 28:35

I think one of the really important ones is, is what afterwards looks like. they have a pretty clear understanding of they're gonna come in, they're gonna have a little bit under supervision, they're gonna eat that dose at home, they're gonna come back because that's sort of all quite straightforward to explain where, where they, the starting point, they'll often come in and, and say their understanding is, is that they're going to have to eat a lot of this food every day for the rest of their lives to maintain the effect. And so there's a lot of sort of talking about, and of course it's hard to do this a little bit because. There are a lot of ways OIT can can end. There's not a single outcome for everybody and in the younger children, for a lot of them it ends in free eating, which is fantastic. And they're often really surprised to hear that because that that just wasn't what they're expecting. They thought the outcome they would get is their chocolate couple of peanuts every day for everyone. They'll be safer. And suddenly we're sort of saying, no, no, no, there's a real chance your child will be introducing peanut back into their diet and eating it as normal. And that's great, but of course it's not a guarantee either. And we have to be clear that there are lots of potential outcomes. And it might look like they are just having a smaller dose regularly, but certainly not every day forever.

And likewise with the older families or the older kids where that is a more realistic outcome, that they are gonna have to maintain the dose indefinitely, but it won't be every day, and that over time that the frequency will reduce, it's gonna have less of an impact on their day-to-day life. And so generally, I find slightly surprisingly, it's, it's sort of good news and that a few years ago we used to get a lot of families in who were sort of surprised when you told them that at the end of six weeks they wouldn't just be eating the food freely because they just have no understanding of it. We don't really get that at all anymore. They all come in much better educated, often because OIT has evolved and in, in a good way. They won't be sighted on the fact that actually outcomes might be quite significantly better than they're expecting. They often don't know about the other alternatives. They won't know, many of them won't have heard of. Biologics like omalizumab that have heard very little about sublingual immunotherapy, cutaneous immunotherapy.

So for some families where. You know, the, the 16-year-old who's a crazy sportsman and, and you know, really the idea of staying still for more than 10 minutes at any point is, is anathema. Then, being able to say, well actually, there are gonna be other options here and we need to think about those. That's really important as well. And again, it comes down to having a good understanding of what, what that child's priorities are. The number of times the parents were saying they're also allergic to this and this house that, and then the child would sort of look at them and look at me and go, I eat that at school all the time. It's, it's great. And, and, and the number of times also when you sort of, you know, I mean this happened the other day just beautifully where I sort of said, so, I understand you also have asthma. Is your asthma well controlled? And it, you know, in perfect tandem, the child said no, and the mother said yes. And you know, there's so many of those things you need to flush out and, and that's why it's so important. You've got the whole family there to go through all of that.

Amanda Whitehouse, PhD: 31:20

Yeah, I love that highlight on communication. You know, that's always one of my big things that I hit home with families. Like we need to really make sure we're all on the same page and obviously not just communicating with you, but with each other because similar to that, you know, there's a lot of room for messages to be missed or crossed in terms of if the child dosed and when, and all of those things that the routine requires once they start the treatment.

Adam Fox, MD: 31:42

yeah, and the other thing I spend a lot of time with is again, trying to talk them through what the experience of OIT is likely to be like, and we make as much of an effort as as we can to try and connect the families with other families because I think that's always really helpful, especially those who have recently been through it. We've got some really nice videos of moms and families talking about the treatment. So that's really useful for people to to hear about. I'm a big fan of analogies to make things a little bit easier to take out the abstract. And I think my favorite one is actually one of Doug Jones's. He's great, he's got loads of these, but you know, he often talks about the journey as being a little bit like getting a plane from one place to the other. if you view sort of side effects as something that as soon as you fail them, you need to bail. It's like saying, you know, we're going to fly from London to New York, but if there's any turbulence, we've got our parachute on, we're out, whereas you just have to just get in that mindset of thinking of things a little bit differently and accepting that what you're doing is an amazing thing. There's gonna be a little bit of noise and some turbulence on the way, but rather than seeing it just as side effects, better think of it as saying, okay, this is confirming I'm allergic. It's telling us that we're getting these little reactions because it's telling us that we're right at the level of where we're just sensitive to this thing and this is part of the process and we're not gonna bail because it's a little bit of turbulence, but it's a road bump, and it'll be fine and we'll get through it. And I think if you start talking in those terms right from the get go, it takes away a lot of the panic that otherwise will ensue as soon as there's even a slight side effect.

And often those side effects are very subjective. We've seen this so many times, especially in the older teenagers. They're getting side effects before they've even put the food in their mouth. They're already getting that subjective sense that something's happening. And that's where the work about, you know, neuro immune interactions, the understanding that your immune system is talking to your gut, is talking to your brain, is talking to your immune system. All of those things really come out because as soon as you are stressed, then already you are more likely to perceive reactions. Any reactions that you have will genuinely be more significant. And, and I think if anybody wasn't convinced that stress can contribute to, to allergic reactions, then they should have been looking after our emails on the night of the England World Cup Games. Anybody who's an England football supporter knows that there is nothing more stressful than than watching England playing football in the World Cup. And we had genuine spikes of allergic reactions of our OIT kids to their doses on the nights that England were playing. And at some point I want to collect this and, and publish it because it's, it'll be absolutely great. Many years ago, on a similar theme, there was a study in the British Medical Journal showing actually that when there was a big match, a big football match on in, in the uk, there'd be a dramatic drop in A&E attendances. And then there'd be a dramatic spike afterwards. And if it was a dramatic game, you'd see more heart attacks, all of these things about how, how sort of these sort of stressful shared events actually impact on community health. But no, no, we, we see these things and, and there's no doubt about it. The kids that are, are just generally more stressed about it, perceive more reactions. They have more reactions. They have a bumpier course and whatever we can do to try and change that, to change the mindset at the beginning. So we've just started organizing. We've got a brilliant psychologist lady called Karen Murphy, who's working very closely with us, and she's starting to do something called Empowered Start. And it's basically a group psychology session for everybody who's about to go into our it. as much as anything else, it's not just her messages, it's. Getting a whole, you know, starting up a little bit of community of people who know they're gonna be going through things together, so everybody feels that they're, they're part of something bigger, which I think is absolutely great and I'm really expecting it to have a big impact on, on, on, you know, the positivity through the process.

Amanda Whitehouse, PhD: 35:18

I love that idea. It's one of the things that I've done trying to get that mindset right from the beginning to start on a good foot. This is one of the focuses on the article that you collaborated on last fall that I love talking about, how do we discuss the signaling when the body is having a mild reaction that when my son was in OIT, the language, we didn't have a framework for this, but the language that we came up with was, there's a difference between your body noticing that you have eaten the allergen and reacting to the allergen. And I don't know if you feel that gets at what you're saying, but can you tell us more about that paper and, and the language that you use to help families and patients to distinguish this, that it's a positive thing. These are positive signals about the treatment.

Adam Fox, MD: 35:58

One of the things I've loved about the whole journey around oral immunotherapy is the way that brought, sort a global community of allergists together. And so I love it when we're able to produce a paper that's one guy in England and one guy in Australia and actually and a and a medical student who's the real reason it happened. This paper that you're referring to, mindset and food immunotherapy, very much sort of the ideas of Pete Smith, he is a very well known allergist in Brisbane, but he's an ideas guy. He has, you know, real vision and he's always been 10 years ahead of everybody else. And Dora, who was an exceptional medical student who joined my clinic initially. And very quickly was, was publishing stuff relating to our outcomes from peanut OIT and then went off to do an elective a clinic in Brisbane, and sort of brought all of this together. And really it's just a collection of conversations put down on paper. Right. It wasn't original research. All of us had had these experiences and we'd noticed very clearly over time, these sometimes quite nuanced ways of communicating about what's gonna happen in the treatment right from the beginning, which is, you know, often the conversations that they'll remember the most is really, really important because it'll inform the rest of it.

I often refer to sort of noise in the system. I talk about that when I'm talking about allergy test results because people often come in with these, these allergy tests and it's a little raised to something that they've been eating regularly. And they're saying, but what's going on? Am I allergic or not allergic? And I say, you know, there's just a bit of noise in the system. It's a biological system and they're always noisy and things are never, always completely settled. And these families, can say, you know this, your child had eczema. When was their eczema always completely the same all the time? If they get a little bit of a cold, the eczema flares up. If they're a bit under the weather, if they're emotionally stressed, if they're tired, they've had a sleepover, you've had a long haul flight, all these things, there'll be a little bit more noise in your eczema, your asthma, and it's the same when it comes to immunotherapy as well. And realistically, we are not gonna achieve this incredible goal of really making life much safer, improving your quality of life without having a little bit of noise and some bumpiness on the way. But that's what it is. It's a, it's a slightly bumpy ride.

And, and I'm always very clear, right from early on, I'll, I'll say our completion rates are 95%, so chances are you're gonna get through this. And actually, if you look at the 5% that don't get through it, the most common reason for not completing treatment is just logistics. Nothing more than that. Only medical. It's just, you know, the 2-year-old who just decides they're not going to eat that food or the journey just is too much because they're coming from a really long way away. All of those sorts of things. So actually, you know, we're expecting you to get through this treatment, but some people have a slightly bumpier ride than others. And often, exactly as you said, what those road bumps are are just your immune system paying attention and the fact that it's paying attention. It's assuring us a, that we are definitely doing some good here. Your immune system is confirming that this is a food that you are allergic to, but we can manage these symptoms and if they become troublesome, we'll just wind back a little bit and we'll take a little bit longer. And our, our tagline, one of my colleagues, George du Toit's tagline is always, it's a marathon, not a sprint. And I always sort of add to that saying the prize is to get there safely, not quickly. And it doesn't matter if it takes a little bit longer, and it doesn't matter if your child gets a few coughs and colds on the way it's gonna happen. There'll be some reactions. There might even be a more significant reaction. But we'll deal with it. We'll find a way and at the end of the day, if it's all too overwhelming or it's too much, you can just get off whenever you like. We can always stop. You're not making an irreversible commitment once you've started.

I think it's just important to take the time to have those conversations, use the right sort of language that remains really positive. I sort of think, I know I'm getting it right in as much as so many families walk away and say, this is the first positive conversation we've ever had about our child's allergist. And you sort of realize that often actually, when in what I consider the dark days where we were a purely diagnostic specialty, where all we were offering is we can tell you what you're allergic to and then you can cross your fingers and hope it goes away on its own. That is a little bit how it feels. Every time we come and see the doctor, we're still allergic to the stuff we were. Sometimes we've got more issues and as you're growing up, the eczema's might be getting better, but the asthma's coming and then there's hay fever and sometimes there's more food allergies. All of those sorts of things. It just feels all very negative and there doesn't feel like there's anything that can do about it. So when we talk about it from a, from a more therapeutic perspective, that actually we have interventions that can make a difference, it just feels so much more positive for families.

Amanda Whitehouse, PhD: 40:05

You're talking about the fact that, that we might have some mild things happen. For those families who do have a significant reaction during the process and they do need to use epinephrine or they do need emergency services, tell me where you go from there and actually maybe start with how do you prepare families who that's the main concern. I'm so terrified to epi my child. And then what do you do when it happens?

Adam Fox, MD: 40:24

Yeah, so again, it's really important to just be talking frankly about it. I've realized that you have to have those statistics to hand because for some families, if you're not able to say it's X percent or Y percent that are gonna have a bad reaction, they're either thinking, well, you don’t know what you're talking about, or without knowing this, we simply cannot take a risk because it's unquantified. So we do have a bit of a dashboard in our service. We've put hundreds and hundreds of kids through this treatment. So we're able to say for different age groups with real reliability, we know what our rate of anaphylaxis is. You've gotta have your eyes open to there is a risk of having a significant reaction that we're always weighing up the value of putting your child at risk in this way at the beginning with what the outcome's gonna be. I think the one thing that's really important about anaphylaxis when it happens as part of an OIT treatment is, it's actually a very managed experience. There's no surprises in as much as it doesn't happen completely out the blue when you weren't expecting it. So if a reaction's gonna happen, it's gonna happen in a timeframe that's around you dosing that child. So you were able to make the decision that your child was well enough, and if you are any way not sure that they are, you don't give the dose.

Now, actually, the reality of it is, is that nearly all of the anaphylaxis that we get as part of treatment is because for whatever reason, they haven't quite stuck to those rules. We have these very strict rules about not dosing. If you've got a temperature, you're under the weather and all of these different things. And actually virtually all the time the parents are able to tell us the next day, they'll say, well, my child had a reaction, but we know why. You know, they'll be able to tell me what the cofactor was. I think parents find this very reassuring, I always say to them, when you strip those reactions out, for certainly the younger kids, anaphylactic risk is probably no more than one or 2%. So, yes, it can happen. So it's really important for us to remember that you can do things exactly by the book and still have a significant reaction. So it's our job to make sure that you are absolutely trained up to the eyeballs as to how to identify, recognize, and treat a significant reaction. But likewise, you have to get it in context that actually, thankfully it's a really small risk and the chances are this isn't gonna be a problem.

And I have to say, I think the number of families that drop out because they're too scared to go through it, actually is really, really small. And one of the other things that we talk a lot about is, you know how we've looked after safety in our facility. So we are, we are not actually practicing within a hospital but we're in a facility where we have a very big allergy service. You've got a lot of allergy people and specialist nurses, et cetera around. But we do have in our facility a pediatric intensivist who is the final word in managing an acutely unwell child. So they're there. We absolutely don't expect them to ever be needed, but they're there just in case.

And one of the benefits of that is that in a regular hospital, you can call the crash team and find that they're looking after a 75-year-old who's just had a heart attack. Whereas in our facility, all we are doing is allergy stuff all day. And this guy has sat there with no one else to worry about other than his paperwork and the very rare occasions that we call him. So we can be absolutely confident that he's not gonna have anything else that's dividing his attention. And I have to say, people find that hugely reassuring. The fact that this, these guys, we've got a rotor of them. They sit there and they do nothing all day essentially. It’s fantastic. It's also great because, because they've got time on their hands, they'll do things that, that, you know, irritate us, like come up with simulation scenarios that they spring on us at a minute's notice and suddenly, you know, we'll, you know, pull a bell and say, you know, there's a child crashing on the first floor, which thankfully, there never has been. And, and you know, there isn't, but you have to go down and they say, right, this child has just walked out your clinic and there's a mannequin there with all their monitors attached and we have to do the scenario. And that's great because it's great practice because thankfully, really severe reactions are rare, but it makes sure that everybody knows where everything is and everybody knows what their job is and their role is. And I think when you can speak very candidly about the way the facility has worked and how we've really thought carefully when we built the place about how to make it as safe as we possibly could, specifically with anaphylaxis and reactions in mind, then I think they feel really reassured by that.

Amanda Whitehouse, PhD: 44:22

I think that's helpful for families to hear, and I would love for you to say a little bit more about what you see happen for those small percentage who do have a severe reaction, how you see things go afterward. Because I know, and I'm going to extrapolate a little bit, but there's research on when parents have to use epinephrine during in office food challenges with all of the positive effects and the confidence and the trust that they develop. Have you seen similar things?

Adam Fox, MD: 44:47

Yeah, that, that's exactly right. So when it happens in our facility, we'll try and use it as a training exercise. You've gotta make a judgment at the time as whether it's the right thing to do for that family. But I think a lot of people, if you say to them, what do you think Anaphylaxis looks and feels like, they have a way more panicked situation than the reality of it, which is their child often looking pretty well, but just coughing. Then when you sort of say, okay, so your child has a persistent cough. It's clearly a reaction. This is anaphylaxis. Sometimes there's a little bit of really, that that's it? And I think it's really great when these sorts of things happen and you can see that nobody's pulse is going up. And that everybody's nice and calm and we're gonna give adrenaline and we're expecting to see a complete response. And in the overwhelming majority of cases you do, because we've got in there nice and early. It's sometimes a real surprise exactly as you said for the parents. It's enormously reassuring when they realize that the parachute, the, the EpiPen that they carry around with them, that it really does work. And that actually the whole thing can be a, a really positive learning experience.

And in fact, we very much sort of see it as a positive when we hear from families where this has happened at home. We always, of course, do a debrief with them and one of the team would always speak to them the next day and they'll say it did feel very managed. They felt that they knew what it was when they saw it. They knew what to do. And yes, it feels managed and that's really important because when you are asking people to make that trade off of giving them something that might cause a severe reaction, they're gonna need to use adrenaline. But that reaction, that managed reaction, they've talked it through before, they've seen it, they feel they can manage it is so much better than when. you are protecting them from in the longer term, which is an unmanaged reaction that happens when you're not expecting it. You can be on a boat off the coast somewhere if you've left your EpiPens in the hotel. You're making that scenario way less likely in exchange for something that, yes, it's unpleasant, but it feels managed,

Amanda Whitehouse, PhD: 46:33

So well said. Thank you so much for explaining all of this. Do you have any final thoughts that you want to wrap up with?

Adam Fox, MD: 46:39

I think that one really important thing that we've not really touched on so much, there's such a critical role for specialist allergy psychologists. I've always felt that it's really hard for non-specialist allergy psych, so psychologists who don't know much about allergy to have a conversation about anxiety with a family who are dealing with a condition that it's not like a. of spiders or something where actually there isn't. Well, if you're in America, maybe there is a real risk, but you know it. The thing is, is that you do need to be a bit worried about your food allergies. You just need to know how to channel and use that anxiety in a constructive way that keeps you safe and not something that does the opposite and actually makes your life worse. So, you need to have a really good understanding of OIT of all of these things for a psychologist to really get the most value out of those interactions.

I've really tried to sort of champion that here. You know, when we go back to when our service was just being formed many years ago, had a very, very serendipitous conversation with a, a, a lady who ran a very small allergy charity who had just been left an enormous endowment and didn't really know what to do with it. And I just got her right the right time and she said, you know, what would you do if you'd be give this money? And I said, well, I would definitely, give our department a lot of money to employ a full-time allergy psychologist. And that's what she did. And we're very quickly be able to, with that endowment, convince the hospital that they really ought to be putting these people on the payroll because they've got an enormous part to play. And, and it's been lovely seeing the specialty grow in the UK now. There's a number of really, really good allergy psychologists and we'd be really lost without them for a lot of these patients.

But I think for me, the next phase of that is it's moving it away from just sort of the, the kids who are the most anxious and the families who are the most anxious to instead using them as much as possible in a way to benefit everybody and getting those resources in place. Because often group sessions are great anyway. Everybody with multiple food allergies should be seeing a psychologist. Sadly, that's a bit of a pipe dream at the moment. I really feel that there's something to be gained by everybody going into OIT seeing a psychologist and for some of them having a number of sessions. One of my jobs at that first appointment is to filter out and identify families where actually, we only need to go so far with this conversation now, actually, this is never gonna happen until we've addressed these other issues. And that's to get the psychologist involved. I have to say, most of them come out the other end of that and, and in a really good place to then progress with treatment.

Amanda Whitehouse, PhD: 48:51

Well, I couldn't think of a better plug to end on. Thank you for recognizing that. In response on behalf of all of us that I know doing what I do, we are so appreciative of that receptivity and those of you who are promoting the importance of that and the collaboration between our fields. I agree with everything you're saying about the importance of it in terms of how to best support our shared patients.

Adam Fox, MD: 49:10

Lovely.

Amanda Whitehouse, PhD: 49:11

So thank, yeah, thank you so much for being on the show. I appreciate all of this insight and, and I'm just so honored to have you here.

Adam Fox, MD: 49:17

Great to be here and yeah, hope it's well received.

49:20

If this conversation shifted how you think about OIT, side effects, or stress about the process, here are three follow-up steps. Number one, follow Professor Fox for more of his thoughtful insights. You can find him on Twitter and Instagram @dradamfox and you can follow his practice @allergy_london or visit allergy london.com to learn more about their work. Number two, if you're in the US and interested in exploring oral immunotherapy, visit fast oit.org to find a provider near you. And third, if you see the importance of navigating not just the medical facts, but the emotional weight of these decisions. You can check out the workbook that I wrote, From Fear to Freedom: A Guide to Navigating Allergy Immunotherapy which walks you through the social and psychological aspects of choosing and navigating immunotherapy decisions. It is available now anywhere you buy your books, search for it on bookshop.org and support local bookstores. I'll put the link in the show notes. Thank you again, as always for being here and continuing to engage thoughtfully in these conversations and in this important season of the podcast. I'll be back 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.