#93 Helping Kids Through OIT: Fear, Coping & Building Confidence with Kelsey Mora

What does it really take to support a child through oral immunotherapy?

The medical protocol is only part of the experience. For children, OIT can involve fear, uncertainty, frustration, procedures, new sensations, and a lot of big feelings—sometimes without the words or skills to communicate what's happening.

In this episode, I talk with Kelsey Mora, a dual-certified Child Life Specialist and Licensed Clinical Professional Counselor, about the emotional and developmental side of supporting kids through food allergy treatment.

Kelsey brings nearly a decade of hospital-based child life experience together with her training as a therapist, giving her a unique perspective on helping children and families navigate medical experiences. She's also the creator of The Method Workbooks, including The Y Method, an interactive workbook designed to help children understand food allergies and immunotherapy while building communication and coping skills.

We talk about preparing children for OIT, helping kids understand what's happening in their bodies, coping with anxiety during treatment, giving children appropriate choices and control, and supporting the whole family through the process.

Follow Kelsey:
@childlifetherapist
childlifetherapist.com
The Y Method: https://a.co/d/0cYsEAPW

Find my book, From Fear to Freedom:
On Amazon - https://a.co/d/0iiOwy04
On bookshop.org - 
https://bookshop.org/p/books/from-fear-to-freedom-a-workbook-for-navigating-allergy-immunotherapy-amanda-r-desio-whitehouse/62f4d096796ed48c?ean=9798995147404&bkshp-astro=t

Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme!
www.kyledine.com

Find Dr. Whitehouse:
-thefoodallergypsychologist.com
-Instagram: @thefoodallergypsychologist
-Facebook: Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist
-welcome@dramandawhitehouse.com

Transcript

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Speaker 0:01

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.

0:24

Supporting a child through food allergy treatment isn't just about getting them to take their dose. For kids who are going through the testing procedures and medical experiences of immunotherapy for food allergies, there can be a whole lot happening underneath the surface: fear, uncertainty, anticipation, frustration, a need for control, and sometimes simply not having the words to explain what they're feeling. That's exactly why I was so excited to have today's conversation with someone who does so much of the same work that I do. My guest is Kelsey Mora, a dual certified child life specialist and licensed clinical professional counselor who brings something very valuable to this space, the perspective of both child life, which focuses on medical experiences, and mental health. Kelsey spent nearly a decade as a hospital-based child life specialist supporting children and families and working with families experiencing cancer. And that work ended up connecting her with the food allergy community. Today she and I talk about what it really looks like to support a child and their family through OIT, not just medically, but emotionally. We talk about preparing kids for treatment, helping them understand what's happening, the language we use, coping with fear and uncertainty, giving them appropriate control, and how parents can support their children without accidentally making treatment feel even scarier

Amanda Whitehouse, PhD 1:40

Kelsey, thank you so much for being here on the Don't Feed the Fear podcast.

Kelsey Mora 1:44

Thank you for having me

Amanda Whitehouse, PhD 1:46

I'm excited to chat. In case anyone's listening isn't already familiar with you, give them an idea a little bit about you and what you do and how you got into what you're doing now

Kelsey Mora 1:55

Yeah. So, um, I'm a dual certified child life specialist and licensed clinical professional counselor. So what that means is child life specialists typically work with pediatric health conditions. I worked in the pediatric ICU for almost a decade, and I really found that career through my friend's cancer experience when I was a teenager. Um, so I was working there and providing help for kids and parents and families with coping at the bedside, so coping with medical procedures, medical events, diagnoses, child development, play. But I went back to school, um, to get my master's in counseling psychology, and so now I really integrate the two fields, so psychotherapy in the context of illness and grief.

Amanda Whitehouse, PhD 2:37

Do you want to tell us a little bit about the experience that got you interested in working with cancer patients?

Kelsey Mora 2:42

Yeah. Um, so just my friend, um, who had leukemia when I was 16, um, unfortunately he died from his cancer experience. So I started volunteering where he was treated and learned about the child life field. And so I went to college and really designed my whole career path, um, around becoming a child life specialist. And through my work with families, I created the DOT Method, which is an interactive tool to teach kids about cancer. It was just a piece of paper and markers, um, that turned into an intervention that's now, um, a workbook to teach kids about cancer. Um, it's been really well-received and helpful for kids navigating their own cancer experience or someone they love, like a parent or relative or friend. And then because I was working so much with food allergies, I realized I'm doing a lot of the same teaching interventions for that as well. So as a child life specialist, a lot of what I do is developmental explanations of something confusing or hard, so breaking it down in a way that kids can understand and helping parents know how to explain those things to their kids.

Amanda Whitehouse, PhD 3:44

You have a really big social media following. I'm sure that's part of what people like about it. It takes these topics that it's like, how do I ever begin to talk to my child about this? And you break it down into those four little steps that are consistent every time, and it makes it feel like you can take a bite out of it and approach it. Are those four steps something that you learned or something that you came up with on your own?

Kelsey Mora 4:02

Yeah. No, it, it's, it's honestly just-- So I feel like I'm like a, a, I'm using air quotes, like a content creator by accident. I created my Instagram account just to, just with the workbook really to promote awareness and, um, it's been really fun to create content in that way. So as I was like learning and trying things out, I started a series on Mondays, How to Teach Kids About, and I'll include a topic each week. Um, and so yeah, it's, I-- In the beginning I was using different headers, but now it's pretty static with, um, explain, clarify, prepare, and support. So, um, it's something that I, that I created, but for the most part it covers, um, what I tend to do is explain, you know, what it means and, and clarify misunderstandings that kids may have about the topic, and then prepare them for what to expect, and then support them along the way.

Amanda Whitehouse, PhD 4:50

I love learning about the work you're doing with pickles. Do you wanna talk about that a little bit?

Kelsey Mora 4:55

Yeah, sure. Um, so that was another kind of happenstance, um, experience. So through my private practice, I was hired by a family to support their kids and two other families who were navigating their parents' cancer, um, bringing kids together, building that peer connection. And so those families actually started a nonprofit, um, it's called Pickles Group. The kids named the organization, and it's for kids and teens who have a parent with cancer or who have lost a parent to cancer. So I left the hospital, um, about four and a half years ago to take on that part-time position as the chief clinical officer. So I design the social-emotional curriculum that kids go through in our youth programming. I design a lot of content for healthcare providers and parents who are trying to figure out how to talk to kids about cancer. Um, unfortunately, there's a lot more early onset cancers, so there's young parents who need help explaining and supporting their kids through it. And so Pickles Group provides, um, free support for families who are in that, um, living that experience.

Amanda Whitehouse, PhD 5:54

Can you tell people how they can find that?

Kelsey Mora 5:56

Of course, yeah. Unfortunately, most people know somebody who can relate to that cancer and/or food allergy experience. Um, so it's picklesgroup.org and, um, yeah, Pickles Group has its own social media accounts as well, but that's the best place for the website, And everything we do is free. So we've got webinars on YouTube. We have a free family cancer support kit that's distributed to hospitals and families, and then the youth programming where kids get to connect with other kids. Um, and they, they kind of just get to be kids, but they also get to learn and process and have coping support as well.

Amanda Whitehouse, PhD 6:30

That's amazing. Well, thank you to the families that started that amazing organization. Unfortunately, there's a lot of people who need that support, so I'm glad it's out there

Kelsey Mora 6:37

Definitely. Yeah, thanks for asking.

Amanda Whitehouse, PhD 6:39

How did food allergies come into the picture in your work?

Kelsey Mora 6:42

Yeah. I mean, it's, it's honestly, I got one patient, um, she was like a six-year-old that was doing oral immunotherapy and struggling and, um, got the referral. It was like, yeah, this makes a lot of sense. Like, I can support with the medical side of things, explaining food allergies, helping with morning dose, helping with coping with anxiety and fear. And I, I, I don't even really remember, but it just really evolved and expanded from there, and it's such a need. Um, I mean, you know better than anyone, but the food allergy-informed counseling, but then also working with young kids. There are just not enough people that are comfortable working with young kids, um, let alone food allergies. And so combining the two, plus child life and counseling just has made so much sense. And so, um, sometimes it's, you know, preparing kids for for starting injections. Sometimes it's helping them get ready to start OIT. Sometimes it's helping them with anxiety when they've kind of gotten off track with their treatment and are struggling with morning dose. Sometimes it's after an anaphylactic event and they're having increased anxiety or fear. Um, so yeah, it really ranges, but it makes so much sense for my background.

Amanda Whitehouse, PhD 7:53

Yeah. Well, and it's funny 'cause I remember when we met, we were like, "Oh, and how old are your kids?" And I was like, "And do both of your kids have food allergies?" 'Cause I made the assumption, everyone else I know in the mental health field working with food allergies, that's why we're doing it. So I'm curious for you, what was it like to learn that medical content? Were you familiar with it already, and how was that to bring into the circle?

Kelsey Mora 8:14

Yeah. I mean, I... You know, in the pediatric ICU, unfortunately, we would have kids who were admitted after an anaphylactic event and some that were very severe, um, so I had worked with kids and families impacted by food allergies, even in the PICU. Um, but I have had some connections to food allergies just in my personal life. Like, my nephew, um, had an allergy, and one of our very close friends had many allergies, um, at a young age and started OIT. And I feel like everyone... It's so common, and people will mention it, and I'm like, "Oh, do you know this doctor?" And, "Have you thought about OIT?" Because I'm just in the space now. But, um, but the learning curve was pretty smooth given how much it relates to everything else I'm doing. You know, skin testing and injections and blood draws. That's something I help kids through on a regular basis. And then while I can't relate to the direct food allergy experience in my personal, my own life or my children's lives, um, I have actually really severe s- uh, seasonal allergies. So I get skin testing, and I get, um, immunotherapy injections. I've gotten them for years, three shots every week. Now I go every four weeks, thank goodness. Um, but I, I can relate to, like, that, that experience, which has some overlap with the, um, testing and treatments.

Amanda Whitehouse, PhD 9:30

And I think that's probably for me, one of the biggest tough topics I talk about with kids, and this is one of the things you talk about in your workbook. But talk to us about how you support kids when there is anything involving needles.

Kelsey Mora 9:42

Yeah. Well, and it's so essential. I mean, thankfully there's new options for epinephrine, but kids who have a needle fear and are struggling with something like blood draw or an injection and then have an emergent situation where they need their epinephrine and it's an auto-injector and things like that, like that's really scary for parents to feel like, "Oh my goodness, my kid's gonna like refuse or fight when it's, you know, a life-threatening situation." And so, um, it comes up a lot. The, uh, medical procedures is like child life 101, so helping kids prepare for medical procedures. I mean, I was at the head of the bed, at the bedside, helping kids through some of the scariest, most painful procedures. And, um, so I know a lot about like pain management. There's ways to make it not hurt as much. There's, um, a lot of skills and strategies that can help kids feel more confident and capable and empowered. So, um, yeah, so helping kids with those things is... You know, I take a child life approach. We do a lot of medical play. We prepare a coping plan. I have a poke plan in my workbook that families can use to establish like what pain management techniques they wanna use. Positioning. Our instincts are a lot of times to hold a child down. That's not what's best for a child. And so working on comfort holds that help them be safe but also comfortable and minimize, um, trauma, and then giving them choice and preferences. I think a lot of people assume kids, you know, should look away. It's gonna be scary if you see what's happening. Some kids are really curious, and they wanna know what's happening. So even whether someone looks away or watches is, is a choice that they, that they can and should have. So, um, yeah, it's a lot of child life 101, but it's so common with kids who are navigating and managing food allergies.

Amanda Whitehouse, PhD 11:23

And I just want to acknowledge, it's so challenging in so many ways for kids, and then the parents have their own level of experience, either fear about or the memory but we don't talk about it. You do, I do, but as a society, we don't really know how to, how to do that, how much choice helps people who are in those scary situations. And it's just something so important for everybody to know

Kelsey Mora 11:45

Yeah. Yeah, for sure. The parent side is huge. There's so much, like, projected anxiety, and also giving parents a role that feels, feels good and helpful and, and, you know, every parent is gonna feel differently in terms of if they even can hold their child, and it's okay to not be able to hold your child, but let's find someone who can, um, you know, safely and things like that. In my private practice, sometimes I'll go with kids. Like, I recently went with a child to their Xolair, their first Xolair injections, um, because the other thing is, like, child life specialists aren't in every clinic. We are often in, near more, um, uh, like hospital-based settings, um, more city locations, less, like, rural community, um, healthcare centers. And so it's not uncommon for us to advocate, like, "Ask for a child life specialist," and then there's probably not one there, which is really unfortunate. And so helping parents know what to do and what to ask for and how to advocate can make a big difference. And so I really want parents working with their kids at home and being able to make a plan that they, they can present to the healthcare team and, and modify as needed, um, but not feel so helpless just because they don't have access to those resources.

Amanda Whitehouse, PhD 12:54

Yeah, absolutely. Well, that leads me to the next thing that obviously we're here to talk about OIT and helping kids and parents and families navigate that. I love to talk to other therapists about this just in general because we didn't used to have any choices, and now we have a choice, which is exciting, but that's what this whole season of the podcast is about. It's also intimidating, and it's confusing, and a lot of people get frozen in terms of making the, the choice. Um, so how do you approach that with your clients?

Kelsey Mora 13:23

Yeah. It's such a good question. I think when you, when you're talking about kids, you're also talking about parent-led choice or child input, some of those nuances as well. And one thing I see families struggle with is that OIT, it's different than... I always say it's different than if you have, let's say, like strep throat and you need an antibiotic to like c- cure the illness, otherwise it will get worse or something like that. Like OIT is such a valuable treatment option, but it's not or it's not l- you know, the... So, so I think it's overwhelming to, to like make a decision like that and for a parent to make a decision for their child. I hear some parents say, you know, "I wanna give my child body autonomy. I don't wanna force them to do something they don't wanna do." But then I also work with parents that are like, really believe that this is in my b- my child's best interest." And I think when parents have permission to have more confidence about that and say to their child, like, "We and the doctors like collectively believe that this is really what's best for you and gonna keep you safest and improve your life," that gives kids confidence. But if we give kids like too much choice, then it, of course they're gonna say, "I don't wanna do that." And so I do work with parents too on like when is an appropriate level of engagement from a child. And just because we're saying like, "We're gonna try this, we think it's in your best interest," doesn't mean there's no choice. Like kids have choice about they take it, where they take it, what they do while they're taking it, um, and things like that. But it's, it, I think that's one of the trickiest parts is that it's not so black and white about when and how to use it, even across the country we see with providers as it's kind of taking off and, um, and being used more regularly. So, um, in terms of my, my role, often families are coming to me because they're, they're ready to start and they're looking for me to help prepare their child and get their family in a good position, um, emotionally and socially to, to start. Sometimes it's, "We've been doing OIT and we're starting to struggle with our dose in the morning." I see that a lot.

Amanda Whitehouse, PhD 15:23

Mm-hmm.

Kelsey Mora 15:23

And sometimes it's a family that's managing food allergies with avoidance and then I ask like, "Has your doctor mentioned OIT?" And, um, and so, you know, I have a kid right now who's like just now starting to consider, um, OIT for sesame, but has worked through a lot of other nut allergies, um, as well. So I think, and just I'm also very comfortable if it's helping families figure out if it's not the right time, if a kid is really struggling to cope, but that doesn't mean that they won't be ready in a couple years or something like that. And so, um, yeah, there's so nuances that, um, you know, we definitely don't want it to be like more traumatic than valuable. But, um, but yeah. It is a, it's so unique for every family.

Amanda Whitehouse, PhD 16:08

Yeah. And all the things you're touching on are something obviously we are having a lot of the same conversations with families and kids, and I try to talk a lot about the gray areas that you're mentioning. I think that really shifts it to consider all those variables. I have a lot of stories like that that are really specific things of kids who are like, "No, I'm not gonna do OIT." And then when you sit down and really listen to them, their reason or their un- their understanding or their misunderstanding was so inaccurate that it was just conversation that needed to happen. And it really shifted things.

Kelsey Mora 16:39

Oh, for sure. I mean, I think so many kids I work with are put off by like ha- like not being able to like be active after, right? So like, uh, often there's the two-hour, you know, wait time. I know it varies by clinic and circumstances, but certainly there's some wait time. And so a lot of times I'm helping kids brainstorm, like what are things that you can do? I worked with a three or four-year-old where we, we called it being calm and cool, and so we needed to find things that we could do that were calm and cool, that helped the OIT absorb and be safe in your body. But also, it doesn't mean you can't do anything. Like, maybe we can't go right to gym class or maybe we can't go, you know, play in a intense soccer game, but that doesn't mean there's nothing we can do. And so I've worked with kids to create baskets of activities that they can do after their dose or, you know, a few distraction or sensory-based materials to help, like during the dose if they're really struggling with the smell or the taste or things like that. And so, you know, of course, the healthcare team has the things that need to be presented and covered, but sometimes families may leave hearing only the risks and the things that they can't do. And so being able to bridge that gap of, "Okay, so we can't soccer right away, but what are some other things that we can do?" I've worked with camps to try to figure out like what is a good time to help a child dose so that they're not missing out on the basketball game with their fellow campers, um, to promote, you know, inclusion. Because that's a big reason I see kids is like, "I don't wanna have to sit out from basketball. I don't wanna have to miss gym." Like, a really active child is being told to hold still, like whether it's for, you know, a poke or for an hour while the, after the OIT, like that's really hard to hear. So that's a big reason I see for sure. Um, and then something that's in my workbook is also helping kids distinguish symptoms and symptoms because kids will feel funny because they haven't eaten this thing and they don't like it. They don't like the way it tastes or feels, or they may have a lump in their throat because they're nervous. And so that is probably... That is really delicate because many people might fear, know, even like people who aren't as familiar with food allergies are like, "I'm not gonna talk a kid out of them thinking they have a reaction 'cause that could be life-threatening." But so often they're, they're safe. Like they feel scared, but they're safe. And so that is a big part of my work, is like finding that even if it's so small. I remember a kid who drew a body outline and drew like a throat closing and a throat like tightening and it was like the difference of like that, yes, my throat feels funny in both scenarios, but I can tell you that it's a very different feeling. And that was like an aha moment, versus assuming every signal their throat was giving them was automatically a reaction.

Amanda Whitehouse, PhD 19:21

Yeah, because anxiety symptoms mimic those of an allergic reaction. There's so much overlap in those possible

Kelsey Mora 19:27

Mm-hmm.

Amanda Whitehouse, PhD 19:27

Symptoms, which is why I talk a lot about body-based work, because that's where we can start to learn those differences, and I know that's a big part of your workbook. Can you talk about that a little bit more and how it addresses that?

Kelsey Mora 19:39

Yeah. Yeah, of course. Um, yeah, I mean, this has been a labor of love. It was even harder than "The DOT Method Cancer Book" just because it's so nuanced and there's so much to cover, and it's complicated to understand. It's called "The Y Method" 'cause I'm really talking about, like, the Y antibodies. Um, but essentially helping kids understand what is a food allergy. So the immune system, uh, reacting to something that it's, that's actually safe, and over time we're trying to retrain the immune system to, to see that food as, you know, safe and tolerable. And so over time they're, like, reducing that reactivity through OIT. But it's not just what is a food allergy, it's also how to cope, how to manage. So, um, it includes things like symptoms they feel in their body when they're having a reaction, symptoms they feel when they're nervous, what's the overlap, what's the difference, um, coping a lot on coping, feelings. Um, there's circles where they draw feeling faces. It's interactive, so every page is meant to be a place for kids to write or draw or express or ask. Um, it includes a glossary of terms that include, like, child-friendly definitions of different food allergy-related terms. Um, and the last page is, is prompting kids to write, to draw a picture of themself living courageously with food allergies. So it's really meant to be Um, it is specifically for IgE-mediated food allergies. I do talk about anaphylaxis and those types of reactions, as well as epinephrine. But it's, um... And, and it's has an immunotherapy component, so it's meant to be helpful for kids who are doing OIT or SLIT or some version of immunotherapy. But it could be a standalone resource for kids who are managing food allergies without the immunotherapy component, because so much of it is, um, mostly rooted in the food allergy lived experience. Um, I touch on a tool that I have developed called RICE, where it's just a tool for helping kids review the menu, inform the, you know, waiter or the birthday party, uh, host, um, check the food, and then eat. Um, and you know, anxiety is when we're doing all of those steps over and over and over again, but, but preparing is doing it once, right? And so helping, helping kids feel empowered and capable and have tools. It's basically a compilation of all the things I do with so many of my clients, um, but it's meant to be accessible for parents to use, for providers to use, um, in their different relationships

Amanda Whitehouse, PhD 22:03

I spend a lot of time with parents talking about the language, and they're like, "I don't know what to say. I don't know how to explain it." And so I think for parents to have that in their hands is really helpful, because that's so much of the work is knowing how to explain and how to get kids to understand it. It's tough for parents to understand. They're not medical professionals, so they might get it, but to then translate that into the language that their child can really understand what's happening, it's all right there for you. So that's really helpful.

Kelsey Mora 22:29

Yeah. Yeah. I mean, of course a four-year-old's not gonna be doing this workbook like cover to cover, but I still think it could be valuable for a parent to have to kind of like start building the relationship or the, excuse me, start building the language and the tools to then, you know, over time build on as their child gets older. Some kids might sit down and do it cover to cover. Some might kind of bounce around and do parts of it over time. Um, and that's why it's meant to be really customizable.

Amanda Whitehouse, PhD 22:52

Yeah. I love that it's so child-focused. Mine is not meant to hand to the kid and put in front of them, 'cause it's too thick and it's gonna be intimidating. Yours is really, like, ownership of the child, "This is a book just about my allergies," and I think it's really cool for kids, being seen in that way, that someone created this just for them, that they can open up and do their work and do their workbook and understand themselves better.

Kelsey Mora 23:15

Yeah. Yeah. I think it's most effective for the child with the food allergies, but I also try to make it so that, like, if a sibling, you know, wants to learn more. My son, he's five, like he understands what a food allergy is 'cause his cousin had one and his friend had one, and we talk about not sharing food at, you know, in, in school and things like that because you don't, you don't know. But half of it is actually educating kids without food allergies to create a more inclusive, um, supportive world. So I hope that the tool could be used for families also who are trying to learn and be supportive of a family or a person that they know.

Amanda Whitehouse, PhD 23:47

You touched on an important part of it is we can only do so much. We only have so much bandwidth to advocate and educate, and obviously we can't control others. But it's different when a child is going into those situations with their own confidence versus the self-consciousness and all of those concerns that you already expressed that are very natural for kids to feel. What's the most important way to develop that confidence in kids or to foster that confidence it takes to do this?

Kelsey Mora 24:12

Yeah. I think a lot of practice, um, that's in- that's the fourth P of the Poke plan is, like, practicing, right? Um, but, but so much of this is scaffolding, and if we start earlier and often, you know, a, a five-year-old becomes a 10-year-old, which then becomes a 15-year-old. And with all of those age milestones, kids are having more autonomy and having more independence. And so starting younger, recognizing that you're building skills for when your child wants to go to 7-Eleven on their bike with their, you know, buddies. Um, they might not be doing that now, but they will want to in, you know, several years. And so how can we build, like, stepping stones to get them to a place where they feel more confident with their peers? Um, I think sometimes kids might want to hide. Um, working with a kid who was, like, dating for the first time, and they kinda wanted to, like, hide that they had food allergies. Like, "Well, it hasn't really come up." Like, "What if, like... What if they don't, like, like me anymore because of it?" And things like that. And so talking a lot about that. But I think building that muscle of I- acknowledging and accepting, like, this is part of me. It doesn't define me. It's not all of me, but it is an important part of me that I can share with others. And that's true for all of the kids I see, whether they have a disability or a medical condition or a food allergy. It's like, know, feeling more confident accepting that part of their identity and also recognizing that it is not all of them.

Amanda Whitehouse, PhD 25:37

I suspect a lot of that is that fear that parents have. If I talk about it, I make it scarier. I don't wanna scare them. With Epi, I think a lot of people don't know how to talk to their kids about it 'cause they're like, "Well, I don't wanna tell them that it's a needle, 'cause then they'll be afraid to use it." So what are your thoughts on that and how you balance the safety without making it more scary?

Kelsey Mora 25:56

I mean, kids are more scared by what they don't understand. And, and so if I'm carrying this thing around that I'm supposed to use in a emergent situation and I don't really know what it is or what it does or how it works, like, that's very mysterious, right? And so having more transparency and really, you know, that every auto-injector comes with the test, like the samples. And so, like I use those in medical play and really help kids, "Okay, let's make a poke plan for the stuffed dog," right? "And you be in the-- you give the Epi." Like, "You're in that role now." Like, "You don't have to be the person that has all the lack of control. Like, why don't you be the, the nurse or you be the doctor," you know? And that's that medical play piece. But that, and then modeling is so much of, is how others talk about and perceive these things. Kids pick up on and see so much of that. And so, um, you know, if they see their parents or their family members exhibiting confidence with these topics, um, it will help them see that it's okay and kinda normalize it, which can be really important. So, uh, establishing language across the whole family, um, I think is really, really important. Um, yeah.

Amanda Whitehouse, PhD 27:07

Yeah. Well, and one of the things that you mentioned earlier in that response is one of the things that I feel like is so important, I was getting at earlier too, in terms of how kids fill in the blanks when we don't tell them specifically, is almost always so much worse than the actual thing. I find that all the time. I, I've had so many kids have their parents tell them about OIT, and those kids know "I'm allergic to eggs. If I eat eggs, I could get really sick. I could have to use my epinephrine. I could have to go to the hospital." So if we don't explain it fully to them, they think, "Oh, I'm gonna go to the doctor and eat eggs. That must mean that I'm gonna have to use my epinephrine," or, "I'm gonna have to go to the hospital or in the ambulance." Like, I've had kids think that that meant that's what they were gonna do every time. Every day they were gonna eat their allergen and then use their epinephrine.

Kelsey Mora 27:52

Yeah. absolutely. Or with like an oral food challenge too, like, "What do you mean I'm gonna go eat what I'm allergic to?" It's confusing. And so yeah, we have to clar- that's that like clarify piece of like what is a kid actually understanding? What are they thinking about? And it might be really far from the reality. A lot of kids, there's also this fear, you know, parents don't wanna explain like how severe it could be, right? And so, um, I've had kids ask me like, "Well, my, my mom says it could be like really serious, but like, could I die?" Right? Like, they're already like wondering these things and carrying around that fear. And so and honest and normalized communication will help kids feel safe asking those really big questions and talking about those things, even if it's scary and hard to do, because they're already thinking about it. They're already worried about it. So being able to ask like, you know, "What would happen if I ate my thing?" Or, "What would happen if I needed my epinephrine?" Or, "What if the epinephrine doesn't work?" You know, I've had, um, you know, there are in a, a handful of more extreme cases where they've needed multiple, you know, rounds of epinephrine, and so then it's hard to reassure a child that the epinephrine's job is to stop the reaction when that maybe hasn't been their lived experience. And so, um, yeah, it's, it's complicated. It's similar to some of the cancer conversations I have as well around, you know, "Well, like my grandma died from cancer, and now my mom has cancer. Does that mean my mom's gonna die?" Well, it's not a one-size-fits-all, but, but the more we openly talk about these things, the safer and more comfortable kids feel, and I really believe that, and I see it in my work.

Amanda Whitehouse, PhD 29:26

Yeah. You said this earlier, how safe and comfortable our kids feel depends a lot on how safe and comfortable we feel as the adults guiding them through it. And we are uncomfortable. It's very uncomfortable to know that your child has a food allergy that could literally be life-threatening. There are parents who are, whether it's because of their own fear or them wanting their kids to understand, are like, "You could die." They're really, like, emphasizing the death part, or they would never want their child to know that, and it's, it's a hard topic. Like, I did a whole episode about how to talk to your kids about food allergies and death, but I want your perspective on it, 'cause obviously you have a wealth of experience working with those tough topics with kids. What do you have to say about that?

Kelsey Mora 30:03

I always say, like, start with what kids need to know, and then build on what they want to know, right? And if we start the conversation, it gives them permission to ask more questions, and they will if they have them. And usually if kids ask questions, they're ready for the honest answer. If a kid says, like, "Could I die?" They really wanna know, could I die, and what will happen? Um, but, but if, if parents aren't talking about it, kids will think they're not supposed to or they shouldn't, and so then they're less comfortable asking the question. Um, death and dying is such a natural part of our world. You know, I always say, like, go outside... It's raining here in Illinois today. Like, there's gonna be dead worms on the, on our walk, you know? Like, and it's just a part of life. And I think if we can approach death and dying as a natural part of life, it will help kids when they're faced with it in a more serious way. It's all about education. And think the slippery slope I find is reassurance because in the anxiety world, sometimes reassurance-seeking can be, like, dangerous, right? The more kids, like, seek reassurance, the more they rely on it. But, but I think the reassurance is, is that clarification, um, aspect of like just making it really clear and then not overindulging, you know, the, the like, the like repetitive, uh, worries and kind of trying to create a limit to that. But I'm curious your thoughts too on like the seeking reassurance and how to give reassurance without giving too much reassurance.

Amanda Whitehouse, PhD 31:35

Yeah. Well, I think, I feel like everything's different when it comes to food allergies, right? There's always with food allergy stuff that, um, root of it that's more serious and more physical, more physiological in the body in terms of that anxiety response and differentiating it from anxiety that I feel like, yeah, it's tri- it's even trickier than it is with, you know, anxiety about other topics or other things that kids deal with 'cause it's, it's so intertwined.

Kelsey Mora 31:56

Yeah. I say that a lot with, like, the work I do and, you know, I do use some cognitive behavioral therapy, but that's not always the right fit for every because some of the thoughts aren't irrational. They're really rational. Like, you have had a severe reaction. Like, this can happen, you know? And so, um, just shifting thoughts alone is not always gonna be the only thing that helps someone feel better. Um, and so I think it's important. That's why our, like, food allergy-informed counselors are gonna have, um, that perspective of how to, how to actually help with the anxiety in a way that's, um, effective versus applying other, other modalities to more typical clinical anxiety.

Amanda Whitehouse, PhD 32:34

Generally speaking, the kids that I know and work with, with food allergies are already very cognitive. They're already in their heads about this. Um, so yeah, sometimes the cognitive work is getting them out of their over-analysis. We always say, "Oh, they're so mature for their age," or, "They're so responsible." Like that's, that's the result of what they've been having to deal with, and we need to get them in touch with their bodies. They're like little thinkers. You know? I, do you find that too?

Kelsey Mora 32:58

Oh, for sure. Yeah. I mean, they've been kind of, um, molded that way just with the cognitive information that they've had to hold at a young age. But, um, and that's why I do a lot of nervous system work, which I know you do as well, is like helping kids understand their fight or flight or freeze response and how... You know, because some kids have a full panic nervous system dysregulation when they see the food they're allergic to, you know? And it's like you-- most kids can sit at a table with another kid who's eating their food allergy, but when they see it, they might go into panic mode. And so helping them understand like, "I'm scared, but I'm safe, and how can I work through this moment?" Um, because so much of it is nervous system regulation. Your body, that your do- your body's doing its job. It's supposed to protect you from harm, but there's a difference between a real threat and a perceived threat. Um, so yeah, that could be tricky. It can really build into a challenging and dangerous cycle, um, if we don't kind of like pull back and understand what's actually happening in the body, right? I see the thing I'm allergic to and my body's going into fight or flight mode, but I'm actually safe. How do I make my body feel safe? I say to kids, like, the coping skills aren't gonna stop a reaction, but they're also not gonna hurt a stressful situation, you know? So it's like, 'cause, you know, if we do, if we're trying to figure out, like, am I having a reaction or am I nervous? And, like, I'm trying things that are reducing that, but, like, it's not gonna stop the reaction, but it's also not gonna hurt when you're getting that epinephrine or something to, like, stay more, to feel more calm, right? If our body is, like, super tense, like, the poke's gonna hurt more, there's more tears, and a lot, like, kids get really worked up and, you know, after dosing they might be more likely to put themself into reaction if they're getting their heart rate so high and getting all worked up. So, also just education around that, like I would, you know, a blood draw, the more you can relax your veins, the less likely it's gonna hurt, and the more the blood's gonna flow. It's all related, for sure.

Amanda Whitehouse, PhD 34:51

What else do you want people to know about the workbook?

Kelsey Mora 34:54

I just wanna make sure people are aware of this resource, and I think it could be a resource that, you know, a family is, is getting for their child. But also, um, I offer like discounted bulk orders for clinics and things like that. So if there's a doctor or provider or someone listening who's like, "Wow," like, "I would love to be able to give that out to my patients," or, um, you know, that could be really helpful. That's what a lot of people have done with my, um, the DOT Method is like cancer clinics will, um, have funding to purchase, you know, discounted copies and then give it to the family to then use at home. That could be another way to offset the cost for a family. Um, and so yeah, and I, um, I hope it helps more kids be able to live confidently and courageously and with their food allergies and perhaps feel more comfortable, um, accessing the treatment options that are available to hopefully improve, improve their life.

Amanda Whitehouse, PhD 35:47

Yeah. Yeah. Thank you for writing it. I know that it's going to. Will you please tell people where they can find you and then where they can find your workbooks?

Kelsey Mora 35:55

Yeah. So, um, my website is childlifetherapist.com. My, um, social media handle is childlifetherapist, and then "The WHY Method" is available on, um, Amazon as well as at my website in discounted bulk orders.

Amanda Whitehouse, PhD 36:08

Thank you for being here, and thank you for all you do.

Kelsey Mora 36:10

Yeah, you as well. I'm so glad we met, and I look forward to continuing more, more work together to help with this space

36:17

If you are parenting a child through food allergy treatment, we hope that this conversation reminded you that supporting your child isn't about making sure they're never scared. It's about helping them understand what's happening, giving them appropriate ways to participate, helping them develop coping skills, and letting them know they don't have to navigate the hard parts alone. Here are three things you can do after listening today. First, follow Kelsey on social media @childlifetherapist or at her website, childlifetherapist.com, where you can learn all about her work and the resources she's created. Number two, one of those is her workbook, The Y Method for kids navigating food allergies and immunotherapy. Kelsey's workbook is made for kids to sit down, draw in, write their own responses, and document their own journey through immunotherapy. Third, if you're looking for more parent support in the form of a workbook, you can check out my book From Fear to Freedom, which gives activities and exercises for parents as well as children. You can find both of our workbooks on amazon.com. As always, thank you for being here, for listening, and being willing to look beyond the fear into what becomes possible when we build competence, connection, and confidence along the way I'll talk to you next week.

Amanda Whitehouse, PhD 37:31

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.