The Food Allergy Brain Episode 12: Dr. Kaitlin Proctor, PhD

This week on The Food Allergy Brain, Mia sits down with Dr. Kaitlin Proctor, a licensed pediatric psychologist, program manager at the Multidisciplinary Feeding Program at Children's Healthcare of Atlanta, and assistant professor at Emory University School of Medicine. Dr. Proctor works at the intersection of food allergies and ARFID (avoidant/restrictive food intake disorder), and she co-launched a pediatric psychology allergy program to bring mental health support directly into the allergy space.

Dr. Proctor breaks down what makes allergy management so emotionally heavy, the tightrope parents and kids walk between safety and freedom, and why a parent's anxiety (and their resilience) can both pass to a child. She also gives one of the clearest explanations you'll hear of what ARFID actually is, why having a food allergy can raise the risk of developing it, and the signs clinicians and parents so often miss. Mia opens up about her own lifelong food allergy anxiety, and the two get honest about the mental health crisis in the allergy community and where to find real support when it feels out of reach.

Find Dr. Kaitlin Proctor, PhD: Google Scholar & LinkedIn (Search up "Dr. Kaitlin Proctor, PhD"

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Website: allergieswithmia.com

Transcript

SPEAKER_00 0:01

Welcome to the Food Allergy Brain. I'm your host, Mia Silverman, Food Allergy Advocate, Content Creator, and Master's student in clinical psychology. This podcast explores the mental and emotional side of living with food allergies through conversations with experts and people doing important work in this space. Before we begin, please remember that everything discussed on this podcast is for informational and educational purposes only. It is not medical advice. For questions about your own health, food allergies, or treatment, always consult with a qualified doctor or medical professional. For today's episode, I'm so excited to welcome Dr. Caitlin Proctor, a licensed pediatric psychologist and program manager at the multidisciplinary feeding program at Children's Healthcare of Atlanta. Dr. Proctor specializes in the intersection of food allergies and RFID, avoidant restrictive food intake disorder, and she co-launched a pediatric psychology allergy program at children's to bring mental health support directly to the allergy space. In this episode, Dr. Proctor breaks down the emotional struggles she sees in both kids and parents navigating food allergies, the complicated balance between vigilance and anxiety, how parental stress can shape a child's relationship with their allergies, and what a truly ideal support system for food allergy families would look like. Let's get into the conversation. Dr. Caitlin Proctor, it's such an honor to have you on the podcast today. Thank you for taking the time out of your really busy schedule to be here, talk about food allergy, psychology, and RFID, which I'm super excited to talk about.

SPEAKER_01 1:33

Yeah, thank you so much for the invitation, Mia. I'm really excited for this conversation.

SPEAKER_00 1:38

So for those that maybe are learning about you for the first time, could you just share a little bit about yourself and what you do?

SPEAKER_01 1:43

Yeah, absolutely. I am a pediatric psychologist by training, which means that I specialize in working with kids and families at the intersection of medical conditions and psychosocial health. And then I have further subspecialization in working with kids and families facing pediatric feeding disorders or avoidant restrictive food intake disorder or RFID for short. So working in these roles, I serve as a licensed psychologist and program manager at Children's Multidisciplinary Feeding Program and at Children's Health Care of Atlanta, where I get to work with kids and families in all of our treatment lines, including our intensive multidisciplinary day treatment program and outpatient therapy clinics. Then I've also had the lovely opportunity to work with food allergy families outside of feeding concerns, working with our allergy and immunology chief at children's Dr. Brian Vickery to launch a pediatric psychology allergy program. And so we provide evaluation and time-limited treatment for patients with the full range of allergic and immunological conditions. And so, in kind of across both of these roles or alongside my clinical role, I'm also really passionate about advancing psychology research for our fit and food allergies and have a joint appointment as an assistant professor at Emory University School of Medicine.

SPEAKER_00 3:01

Oh, you're so impressive. That is so, so, so cool. Good for you. Good for you, Dr. Fractor. I love to like learn about just like your path to becoming a pediatric psychologist, especially, you know, being focused on, you know, health psychology, like food allergies and RFID. Because it's really, really niche. I feel like this is kind of a still like a newer evolving field compared to other types of like maybe health psychology. So I guess like what got you interested in this in the first place to tell me about your journey overall.

SPEAKER_01 3:30

For sure. I think it's so true that this isn't always the niche area that first comes to mind when you sit down as a new grad student. But I if I I have to say, I couldn't love anything more, I don't think. So when I when I first started my training, I knew I wanted to pursue practice in pediatrics. Then gained experience working in a variety of clinical child and adolescent settings. And then, as fortune would have it, I had some unique opportunities to work in different medical settings, including with kids with conditions like cancer and blood disorders and gastroenterology. And at that point I was hooked. So having the experience and ability to work with a multidisciplinary team in these medical settings, you know, I knew this was it, this was where I wanted to practice. And then I was fortunate to get specialized experience during internship at postdoc. And then after, um, after postdoc, as I was looking for jobs, found a posting for a feeding psychologist position. And that was really, really fascinating to me for several reasons. Namely, I had seen across all of the chronic illness conditions how much the parent-child relationship could be impacted by a medical condition, medical illness, and then particularly some of the unique impacts that those conditions had on feeding and eating. And and so I was really, you know, curious about this practice area. I don't I don't know about you and your training, but most most psychologists haven't received uh a lot of training historically in RFIT or pediatric feeding problems. And so as I was seeing these things with the patients and families I was working with, I didn't know there weren't a lot of resources to know how to support families in these in these areas. And so I was especially interested to hold a role that would allow me to kind of bridge these areas of practice. So spent a few years developing specialization in feeding, and then another bit of luck involved. Our feeding clinic expanded into a new building that happened to be co-located with the goal of bringing a bunch of medical subspecialties under one roof to improve access for families. And allergy was one of those subspecialties. And so we started having like curbside consults with Dr. Vickery and his team, and quick pretty quickly became clear to us that allergies were overrepresented in our feeding clinic compared to what you would expect to see in the community. And then similarly, you know, we started identifying that actually there might be a lot of allergy patients who were experiencing significant feeding problems consistent with RFID, but that at that time this idea or framework of RFID hadn't really permeated into the allergy space. And so that's where our research efforts at this intersection really started.

SPEAKER_00 6:29

That's incredibly fascinating. Thank you for sharing that. And, you know, even doing this for a while now. What has been the most rewarding part of this work for you?

SPEAKER_01 6:40

Yeah, I think there have been several moments of seeing kids and their families feel validated and supported and held differently when we're able to say, hey, there's a name for this, this feeding thing that you and your child are experiencing. It makes sense to us. There are things we can do to help. You know, I've had the opportunity to present at conferences and had folks approach me afterwards and say, you know, I I really see myself in what you presented. And it validated my experience and it it gave me a new way to describe that experience. And that was so that's so rewarding for me because when we can recognize it, name it, we can connect people with the resources to help.

SPEAKER_00 7:22

Absolutely. Absolutely. That's great. And you know, I feel like it because this space or this field is still new and evolving every day, there's probably a lot of different surprising things that occur. What has surprised you most, whether that is clinically or in your research about how food allergies affect kids and families psychologically?

SPEAKER_01 7:45

Yeah, absolutely. I think the thing that one of the things that's been most surprising is just how pervasive allergy management can be and how much it requires. So, one example that I've used to illustrate this is to do an exercise. And I'd be really curious, Mia, to hear your reaction based on your lived experience is that I asked people to think about the last time they were in a crowded space for a while, like an airplane or a subway or a restaurant, and then call to mind all the instances that they saw people around them sneezing and coughing and then going to touch things like door handles and chairs and shared objects and really put themselves in that setting. And then I asked them to do a body scan and I asked questions like, do they feel a headache coming on? Do they have a lot of stuffy nose? Do they have a little scratch in their throat? Does attending to that sensation heighten it at all? Are they confident that that's not are they confident whether that's their brain cueing those signals, or is it really a a you know, body signal for an incoming cold they hadn't yet noticed? And then I compare that experience to that of someone living with food allergy needing to do this checking exercise every time they're around food. And by the way, if you're wrong, if you miscalculate, if you make a mistake, it could quickly become quite scary or dangerous. And so I think working with folks with food allergies, it's been really eye-opening to see just how integrated that food is into daily life, how it layers on the social relationships, to family relationships, to academic and work environments, and just how many layers it adds to navigating all these spaces.

SPEAKER_00 9:25

That's so interesting. Wow. I mean, I think that's true. Like I feel like, I mean, just when you were giving that visual like idea of like being on the subway with people, I'm like, oh, like I kind of feel like I was like physically cringing a little bit and feeling a little bit like uncomfortable. And I was like, that, I mean, that's so interesting. So when you're, you know, like practicing your psychology, you know, like clinically, what are the most like common emotional struggles you see in kids themselves and then parents as well separately from your perspective?

SPEAKER_01 9:56

I think for kids and parents both, it often boils down to the challenge of holding the dialectic. And what I mean by that is this tension between two opposing things that can be true at the same time. So navigating what is the right amount of vigilance? Can I keep my child safe and let them be free to explore their environment? Can I communicate the seriousness of allergy without scaring my child? For kids, I think this might look like, you know, can I ensure that my needs are met related to being safe and to feel like I'm meeting the milestone of other kids, typical for my age? So, for example, for you know, a toddler who wants to assert their autonomy and know or feel have that's that fault sense of safety. For school-aged kids feeling socially included and knowing that their allergies are being taken seriously and that they can remain safe. And I think food allergies can be particularly challenging because they are they require often multiple things to be true at once. And they're characterized by this kind of lack of symptoms and avoidance of triggers. So as part of the the management paradigm here, avoidance and vigilance are required. And it can be hard to walk that line without crossing into anxiety and hypervigilance and this kind of scope creep where allergies start to take over or overshadow some of the other values in a person's life. And it's one of the reasons I appreciate your online presence because I think you really lean into holding that dialectic. And, you know, it's hard and I can do it safely. It's uncomfortable and it's important. So I, you know, I think that's the line that's hard to walk oftentimes.

SPEAKER_00 11:46

It's hard. You know, there's a lot of nuance in finding a balance, and that can be really challenging for like having a life-threatening health condition, especially when you have like a child that has allergies. Like, we just it's it's so I mean, I obviously I don't have kids, so I don't understand, but like as my parents, like my mom, like I just can only imagine how stressful that must be to have a kid that has allergies, and you probably didn't have like knowledge about it before, having to figure out like how do I keep my child safe, but also like so that's that's that's a I feel like that makes sense. And so in that situation or in those instances, like what do you tell parents, you know, that are experiencing or try or having a difficult time finding a balance between wanting to keep their child safe and being protective, but also trying to give them the space to like advocate for themselves and let them live their life to the followers, but again, like in a safe way.

SPEAKER_01 12:38

Yeah, I I often encourage to approach communication like the similar to how we approach other health behaviors. So, in the same way that we're teaching a young child to wash their hands so that they don't get a virus and get sick, we're teaching kids with allergies some foods aren't safe for your body, but these are the things that we know we we do to keep you healthy. So I think ri being intentional about the language around you know, these are the safety behaviors that are important for your body. Giving the kids those clear or as clear as we can parameters around what they can do safely is a is one way to kind of scaffold that protection and and necessary management alongside you know, this is part of who you are as a whole person.

SPEAKER_00 13:31

That's a really good answer. I do think language really matters, like the way you phrase things to your kid. I mean, we're actually kind of getting into that later in the episode once they have some questions about that. But that's that's that thank you for sharing that insight. And, you know, you do, you know, research working towards developing like better tools to measure like the psychosocial impacts of food allergies. Why have I mean that's kind of an obvious answer because it's a new evolving field, but there is such a gap with this and you know it really matters. But like, why do you think there is a gap and this is like this is now becoming a thing, or we're now like like trying to do research on the mental health side of allergies and coming up with these different measures and doing it in a rigorous way?

SPEAKER_01 14:15

Yeah, I think that we we're we're moving from a place of description into a place of action. And so the existing measures that were initially developed were in many cases developed for descriptive purposes, to describe quality of life, to describe food allergy impact. But they weren't necessarily built and tested with measuring change in mind. And so I think this is one possible reason that some of the psychological outcomes from clinical medical trials are kind of mixed or equivocal about the impacts of those interventions on outcomes like quality of life or anxiety. Because I don't think we necessarily know whether it there really isn't an impact or whether our measure isn't picking up on or developed to be sensitive to that change. You know, in a in addition, we've worked on measure development because there were measures that assessed things like parent anxiety or parents' perceptions of their child's quality of life, but there wasn't yet a measure assessing the impact on the family system. And in pediatrics, oftentimes we're talking about an index food reaction happening when a child is young. And so a lot of early food allergy management falls to caregivers. And so we thought that this was a gap that we wanted to try to or start to fill.

SPEAKER_00 15:49

I mean, that's really important work. So just thank you for doing that. I mean, I think there's such a personally, I mean, I don't, I mean, I don't I obviously don't want to like be general, but I think there is a crisis, like a mental health crisis in our community. And I really appreciate the work you're doing to help kind of not like fix it, but find new measures, new interventions, new ways to diagnose and to just better support people that have allergies and the mental health side of that because it's a problem. Like I've dealt with food allergy anxiety my whole life. I saw a food allergy psychologist growing up, and like she's amazing and she changed my life, but I still experience it. There's a lot of people that you know are in need of that kind of support or just that validation that this does exist. So what you're doing, as I said, is super duper important.

SPEAKER_01 16:34

I'm glad that you're doing efforts like Hostine's podcast. We need more mental health providers in this space. And to your point, it's quite reasonable that a person's experience with anxiety might change over the course of their life, or different situations might require or or warrant different kinds of supports across time. And so I think the more people we can get in this space, the better off we are.

SPEAKER_00 17:01

Yes, amen to that. And and I think it's, you know, I'm in my, I'm in graduate school right now, getting my master's in clinical psych. And I I, as someone that again saw food allergy psychologist and knowing what it's like to live with allergies, I want to be able to provide that for people because I understand what it's like being in their shoes. And I think like the next wave of allergy psychology hopefully will be people that are food allergic individuals themselves to kind of like provide their personal experience and anecdote. So it's just like there's a lot of hope in this field with people like you, people, like other amazing psychologists. So it's just, I'm feeling really optimistic. And so again, thank you for all the work that you do. I want to kind of transition more into RFID, because you kind of discussed that briefly. And there's just that's something that I'm super fascinated about and just super curious about, and how there is kind of a connection between like RFID and food allergies. And you are one of the leading researchers in RFID, which is super cool. And you know, for those that don't know, RFID stands for avoidant or restrictive food intake disorder, and it seems to show up in many food allergy patients. Can you, for those that don't know what RFID is, could you explain what it is, like a diagnosis? And you know, yeah, we'll get to that first. Yeah, can you explain what RFID actually is for those that have not heard of it before?

SPEAKER_01 18:16

Yeah, for sure. So RFID is listed in the DSM alongside feeding or eating disorders, but it's a little different from maybe what a person might have heard of more traditionally, along with along with an eating disorder. So RFID is involves a hedonically or kind of physiologically negative experience with the process of eating. So a person might meet criteria for RFID if they meet one of four, at least one of four criteria, our clinical kind of flags that we're looking for. A person could have one or multiple of these. So the first way that a person would meet criteria for RFID is if there has been in pediatrics kind of a growth failure or significant weight loss growth or growth faltering. So we generally expect kids to maintain their own growth curve over time. If the velocity changes, they if they lose that that progress and start to fall off of their own curve, we might consider that a sign of growth faltering. If our height acceleration isn't keeping up with where we might expect, that would be an example of growth faltering. So if a person has growth faltering or weight loss, that would be one criteria. Or if they have nutrient deficiencies from their restricted diet, this could, on the extreme end, look like presenting with scurvy or rickets. We see that in our clinic here. But it could also represent more of a dietary insufficiency. So we have kind of a persistent underrepresentation of certain nutrients in the diet. And then the fourth criteria would be someone who experiences significant psychosocial impairment or disruption because of the restriction to their eating. So a couple of really important things to note here is that RFID can't and shouldn't be diagnosed if food restriction occurs only as it is required by a medical condition, or if a child isn't medically safe to eat food by mouth, for example, we wouldn't call that RFID. So the other thing that that RFID involves is that it's really, again, about kind of the process of eating. It's not restricted eating in an attempt to control or change one's body weight or shape. So a person can present with RFID, be diagnosed with RFID if they meet any of those four criteria. And we're we're learning about why RFID happens, but I think this is really kind of cool and something that's important to point out. There's some really cool science exploring the neurobiology of RFID. So there are three kind of identified mechanisms or things that seem to drive the clinical expression of those care four characteristics I just named. So the three mechanisms, again, a person could have one, two, or all three. But the first mechanism would be low appetite or low interest in eating. An example of that might be if I did not remind you to eat, you would just forget. It just wouldn't come to mind. You might not get those reliable hunger uh cues. A second mechanism would be uh sensory sensitivity or uh kind of food neophobia, a really strong heightened sensory response to foods. And then a third mechanism would be fear or panic about the uh effect or outcome of eating a food that drives down intake. And it's really some of the neurobiology is really interesting. For example, in that low appetite, low interest profile, we see dysregulation of hunger and satiety hormones so that a person experiences more muted hunger hunger signaling and earlier fullness cues. So it's hard to eat enough because these the body isn't really cueing you the same way. Same profile in an fMRI, those brain reward signals that say, hey, go seek out this food, they don't light up as strongly as it would in a person without RFED. Similarly, yeah, fascinating. If we if we look at that fear, yep, the fear profile, the amygdala lights up a ton. So the body is just giving different signals in response to food needing.

SPEAKER_00 22:47

So is that like some like genetic like component to it? Or is that like is that something you're just kind of born with, but maybe like, I mean, there's probably still so many questions that are not answered yet, but that does not sound like it's I mean, it sounds like it obviously is, I mean like it's a form of an eating disorder, but it seems like there's some biology behind it to, or neurobiology that to to cause that.

SPEAKER_01 23:10

Yeah, it's definitely multifactorial. So I I don't think we have a if it's similar to some of the psychology research and phudology. I think in many cases we're still at a descriptive standpoint. I don't think we have there's not a lot of research that points to why all why these things may happen. But but for sure, I think it's probably kind of that diathesis stress model where like you have a hardwired system with experiences in the world. So for sure, it's it's really really interesting. And I also want to differentiate here a little further RFID from another restrictive eating disorder like anorexia nervosa. Within within RFID, the fundamental experience of food is different. So within another restrictive eating disorder like anorexia, the fundamental experience of food is positive, but the outcome of eating is unwanted. So weight gain or feeling of loss of control. With RFID, it's it's about the process of eating. It's it's the the experience, not necessarily related to concern, like the outcome on one's body shape or weight.

SPEAKER_00 24:22

Yeah, I think that clarification is important. So thank you for kind of clarifying that for those maybe are not familiar. That's really fascinating, though. So thank you for providing all that insight. And you know, you mentioned that your research has kind of showed that RFID is obviously like an underrecognized clinical complication of food allergies, not just like a coincidence. Can you kind of walk us through that connection and like why does like having a food allergy put someone at a higher risk for RFID? Because that's I mean, that's shocking.

SPEAKER_01 25:00

Sure, yeah. It's again, I think here multifactorial. Certainly not everyone with allergy will develop RFID, but there are some aspects of allergy that present known risk factors for developing RFID. And then there are some of those personal neurobiological risk factors that increase risk for RFID. So in combined, when those things happen to come together, it can be extremely difficult to manage. So for those shared allergy characteristics, you know, having a painful or scary experience with food can create a negative relationship with eating, either through direct pairing, eating cause pain, or through establishing a cycle of kind of learned avoidance, and avoidance here to clarify for our ideas, meaning avoidance of anxiety and distress and not avoidance of allergens. Kind of this learned cycle of avoidance of negative emotional states and uh you know avoidance can in the long run lead to some uh restriction of eating over time. We also know from research in some of some GI conditions that exclusion diets seem to increase risk for disordered eating. But again, not really quite sure on the mechanisms there, but potentially this could be related to creating just conditions of vigilance surrounding food. So with an allergy, food might become synonymous or linked with threat. And so avoidance might develop that is reinforcing and feels more comfortable in the short term, but can kind of gain traction and become a little bit more of a bear to manage over time.

SPEAKER_00 26:52

Wow. And just to kind of follow up on that, you know, because you see patients that have like, you know, allergies and also RFID, and just in generally speaking, like clinicians, allergists, pediatricians, they might miss RFID, like when it's happening alongside someone that has food allergies. What are the signs? Kind of like explain the specific signs, but there must be signs that get overlooked that they miss that. Like, are there any examples or any signs that do get overlooked, which is why they don't get this diagnosis, or they don't really like recognize that that this patient has not only food allergies, but also potentially R fit as well?

SPEAKER_01 27:29

Yeah, I absolutely I think I think there's a few things that stand out in this area. And one is that historically, I think food avoidance has been part and parcel, like this is the something you unfortunately have to do with allergy. And I think there's this growing awareness in the allergy space that that of that avoidance is a broad spectrum, yeah. Really gaining a little bit more uh nuanced understanding of some of the lived experience of folks with allergy and s and some of the uh work in the RFID space indicating that food restriction, I think, sometimes has just been chalked up as a necessary part of anxiety management or allergy management. There hasn't always been a lot of clinical guidance to exp to further explore or support or assess even the extent of avoidance and when it crosses beyond what is required of the medical condition and now warrant clinical attention. I think also, unfortunately, I've seen a number of families who share experiences of having tried to express concerns about their child's eating to a, you know, a provider that is part of their child care team. And the response was well intended, but assuming that the child was a typical eater with a positive response to food or eating. And so the response sometimes was, you know, I'm I'm concerned my child is picky, and the provider's saying, oh, they'll they'll grow out of it, or their growth is fine, so their intake must be fine, or, you know, just give them what the family is eating and wait them out. And I think sometimes that has led to families and clinicians speaking in slightly different languages when it comes to talking about kids eating. And so I think in terms of signs that might be overlooked, when parents are expressing concerns about eating as a clinician, I'm listening for details like, are we having super prolonged or tense mealtimes? Is there a really persistent pattern of food refusal that goes beyond what can't safely be consumed from an allergy perspective and into foods that aren't accepted from a fear or a sensory perspective? And or is there a really intense kind of behavioral or emotional response when a new food is presented?

SPEAKER_00 29:52

Interesting. Wow. And so just like to add on to that question, like when RFID, then let's say you identify that this patient, for example, that has allergies also has RFID. What does that kind of treatment or psychological support look like? Can you kind of walk us through kind of what that pro like how that process goes?

SPEAKER_01 30:12

Absolutely. I think the good news is that there are effective treatments for RFID. Feeding and eating reflects a complex system. So we try to think pretty holistically about feeding and eating aligned with RFID. So the first step, as a psychologist, particularly, that I take is to make sure that we're working with the child's medical team to rule out any underlying medical conditions that might contribute to feeding difficulties or cause pain or discomfort while eating or might be impacting growth. We also look at nutritional status as evidenced by growth over time and the nutritional adequacy of the diet, which can be done with a registered dietitian. And then working with somebody like a registered dietitian can be really instrumental in problem solving. Are there allergy safe? Are we do we have gaps in the diet because we need allergy-safe replacements? So if we're eliminating dairy, for example, do we just need other sources of calcium and vitamin D that a dietitian can help kind of troubleshoot and fill in for nutrients? And when presented, kiddo will happily consume those things. That's a great solution if that's what it is. When we're talking our food, we're usually looking a little beyond that, where we need a little additional support to feel uh confident and successful trying new things. As part of feeding treatment, we're also going to look at whether there are any swallow safety or oral mechanics kind of concerns that might impact beating. And this could involve working with a speech language pathologist if there are concerns about these mechanics. So making sure we have adequate strength and duration for chewing, making sure that we're swallowing safely with liquids. And once we've either kind of ruled out or successfully managed any of these medical conditions or swallowing safety concerns, if we're thinking about working with a psychologist or behavior behavioral mental health provider, that treatment is going to look a little different depending on a person's age, cognitive abilities, other factors. But when we're talking psychology-based treatment for RFID, we're really thinking about a graded exposure approach, similar in some ways to anxiety treatment. So, you know, in my practice, based on the evidence base, we're usually implementing behavioral or cognitive behavioral treatment with a goal of providing kind of a progressive approach towards consuming previously avoided foods and a goal of building comfort with and mastery of different textures and flavors. We're also alongside that working on eating on a schedule or kind of pattern across the day, maintaining all established foods in the diet, and having pleasant, positive mealtimes with family and friends so that we have that nice strong mealtime foundation so that when we get new foods added, we have somewhere that they can be successfully implemented into the diet.

SPEAKER_00 33:12

That seems like really comprehensive, which is good, and multidisciplinary, to think is so important for something like Arfin allergies, like having like a dietitian, psychologist, like having a bit like I think that's that definitely like makes sense. And it's so important. It's probably though I can imagine like for people that can't access that kind of resources or support, that's that's the one problem. But I'm hoping that, you know, in this lifetime we'll be able to have that kind of approach for or for other, you know, health conditions where there is that multidisciplinary approach where there are different people doing different things to help support these people. I'd love to transition a bit more to like the parental side of things and the psychology that they like the challenges they experience, navigating having a child with food allergies or and or are fit as well. You know, so let's say someone's child gets diagnosed with severe food allergies, obviously that weighs on the parent, but often oftentimes that that emotional weight can kind of translate to the child and their experience. Like, what have you seen in that instance? Like, how has the way parents deal with you know their child's food allergies, like how it affects them psychologically? Like, how does that affect the child as a result?

SPEAKER_01 34:31

One of the things that I've I've been really honored to witness and really struck by in in my work with families is how central the role of feeding is on a parent's kind of self-efficacy on their identity. You know, you can see this in phrases like feeding is fundamental and fed is best. And and so oftentimes as parents, one of our first tasks that where we get to start, you know, putting on our our chops is to be called to feed our kids. And so when when that process gets disrupted, I think in some some cases it can send off a bit of a shock wave and and really shake parents' confidence in feeding. And alongside that, it's activating fears around their child's, you know, physical safety, their social inclusion, their belongingness, potentially over time. And really, there's a you know another layer here of allergies that they kind of thrust parents into the position of needing to be medical first responders in the event of a reaction. So they have to make real-time decisions about whether or what types of treatment to administer. And I think the the allergists that I work with do a great job of giving that allergy action plan. It's also very different to be like, okay, I'm now assessing in real time what I see on my kid and then decide making decisions about when and and how to treat and making sure I'm following the plan. So, you know, I think these are some examples of ways that allergies show up in the in the parent-child relationship and their parents' own kind of self-efficacy and and self-perception. And so I think a lot of times parents find themselves in this kind of chronic state of vigilance or stress. And so when we were eat some of these themes have come up as we were working on that food allergy measure, we heard parent themes around things like the pervasive personal and family adjustments that are made every day, and the pressures of require of acquiring an immense amount of allergy-specific knowledge very quickly. And the number of daily management tasks required and the stress on communication with others, including health care providers, educators, peers, friends, extended family. So this is a really hard balance, I think, for parents to walk. And with regards to your question about transmission or kind of child anxiety, I don't think you have a great framework from a research perspective to understand exactly how a parent's experience of allergy translates to the child's experience. I do want to make a plug here to note, too, that I think the power of modeling goes in both directions. And so parents are powerful models for their children, potentially for anxiety. It stands to reason that the way that I as a parent approach a problem is likely to kind of model or transmit to my my child how to approach a problem he's experiencing, but it also again translates in a positive direction. So I I've been really impressed by the way I see resilience translating across families as well. So a parent who's clear on their goals and their values for their child related to balancing safety with inclusion, who finds that kind of confidence solution-focused approach to ensuring accommodations are appropriate, who reinforces the way their child can be and is included, help their child to develop a similar approach.

SPEAKER_00 38:17

I mean, I think that's so true that I mean, just speaking psychologically, like parents are like your first like role models for like every for everything, like your whatever parental figures or caregiver, whoever raises you, like that's kind of your your role model, like what you look up to, what you know. And so I definitely think that if the parent has a healthy, well, not healthy, that's kind of subjective, but has a positive like outlook on allergies, or at least knows how to balance like the the of course, like understandable anxiety that you might feel for your child, but also trying to empower your child and teach them how to advocate for themselves. Like that definitely would translate well. But that again that that shows that this field is still so new. There's so many questions like this, like how does so there's so many opportunities and research and things like that, which is very exciting. So thank you for providing that super in-depth answer because that was that's really, really fascinating. I I kind of touched on this, but I mean, obviously, not everyone has access to psychologists or even pediatric psychologists who specialize in food allergies and RFID. Like, what can families do to get that specialized support that's even if it's not really available for them? Like, are there any resources or books or or anything that you had to recommend?

SPEAKER_01 39:34

Yes, I absolutely appreciate this question. Um, I think RFID is a really heterogeneous population. And what I mean by that is level of symptoms, level of impact, and the relative need for the contribution of like having all these different providers on a care team can vary. So I think if you're if you're needing to kind of triage, I would kind of go sequentially. You know, check off your check your medical bucket, meet with a dietitian, know where the gaffes are, and then if you can find a psychologist or mental health provider. A lot of in a lot of cases, you'll be looking to work with an outpatient psychologist or mental health provider one-on-one, meeting for about 45 minutes once a once every week or two weeks. You know, we can think about some ways to identify providers in your community that might align or be able to provide this type of services. You can look into private practices. University psychology training clinics are places I often encourage folks to look because these clinics often work on a sliding scale, work with each family based on their outcome. Within a training clinic, you're getting two brains. So you're working with a grad student and a faculty mentor. They're usually quite up to date on, you know, ongoing research and best practices. You can also look at, you know, children's healthcare organizations like children's hospitals have some ideas. There are websites like Psychology Today that are available. Those aren't moderated or vetted, but they can be useful for narrowing down the search locally. There's also the Food Allergy Counselor Directory where allergy informed providers are listed. And many of those providers can provide telehealth services across states. So terms that I would be looking for here, just based on current orphan treatments, are looking for things like cognitive behavioral treatment, you know, acceptance and commitment therapy, dialectical behavior therapy. These are all evidence-based treatments for pediatric mood and behavioral disorders. It might be a sh a reasonable starting point when trying to find the right fit for your child or family. I also strongly encourage parents to consider whether it would be beneficial to have their own personal support. Being a caretaker for a child with chronic conditions can present really neat challenges. And I love some resources on there's there's a great website run by the Caregiver Well-being special interest group, which is a part of the American Psychological Association Society of Pediatric Psychology. And they have some really nice resources on parental support. I think if if we're thinking about needing treatment beyond an outpatient level of care, so those more severe presentations for RFID, that's when I would look for an intensive or kind of multidisciplinary feeding program. At CHOA, we have an intensive feeding program where parents come to treatment five days a week, eight to ten weeks, four therapeutic meals a day. So it's a very high dosage of treatment. And in that setting, that's where you get the kind of full multidisciplinary team all with eyes on. And then unfortunately, related to your access question, those those centers are are fewer and far between. So our team has done some landscape re landscaping research in this area. And there's about 16 sites in the US that provide this type of multidisciplinary care. So some of them will be nothing.

SPEAKER_00 43:25

16? That's not that's nothing. That's like, wow. I thought maybe it was a bit more than that. Oh my gosh. Yeah, there definitely is a yeah. Wow.

SPEAKER_01 43:34

For something like the like an intensive program. Of course, of course. Those are those are a little a little harder to come by, but we'll often take families from out of state. So those those would be good resources potentially if we're looking at needing a little more support.

SPEAKER_00 43:52

That's really helpful. So thank you for providing that information. Okay, so I asked this question to all my guests. So and I feel like every answer is slightly different. So I'm very curious to hear what you have to say. But if you could design the ideal emotional and medical support system for food allergies in families, what would that look like to you?

SPEAKER_01 44:11

I love this question. And I think it really I think it really rides on everything that that we've just been talking about, which is I would love to see access to truly multidisciplinary care. We're talking allergists, psychologists, dietitians, social workers, child life, all in the same clinic that visits with all disciplines are available, particularly during times of transition or heightened stress, like after a reaction. Because I know that siloed care adds to patient burden and legwork, and it can be so frustratingly limiting. So my pie in the sky, my dream would be to continue seeing the field. And I think we're already seeing this. And so I think, as you mentioned earlier, there's a lot to be hopeful about here. It's really, I hope, that we continue to move toward that interdisciplinary care.

SPEAKER_00 45:03

That's the dream. I can hope to see that in our lifetime. That would be amazing. And so for those that want that are listening that want to kind of follow the work you do, like, do you have social media or do you have a website that I could link in my description that people can, or even just look me up on like Google Scholar and see the research you published?

SPEAKER_01 45:23

Yeah, Google Scholar, LinkedIn, you know, we that's very go to share our work. You know, I I think aller the allergy community is a really strong one. And so I, you know, often go to allergy conferences like the Fair Summit that that bring kind of multiple stakeholders together. Something in the works for social media, but not quite yet ready to share yet. So hopefully that'll be fair enough. Stay tuned.

SPEAKER_00 45:52

Well, thank you, Dr. Proctor, again for your time and for sharing just so much insight, especially about RFID. This has been such an incredibly like fascinating conversation. And to those that are listening, thank you for taking the time to listen to today's episode. Hope you all have a great day or night wherever you're from, and I'll see you next time. Bye. Thank you, yeah.