When Options FEEL overwhelming: Our Immunotherapy Journey (& A big announcement!)
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.
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.
Hi everybody, and welcome back to Don't Feed the Fear. Today's episode feels really special because I'm going to share with you some things that I've been working on for a long time. It's a topic that's been on my mind for over a decade, something that I've been learning about through my own experiences with my son's allergies, with my clients, and through some episodes of the podcast that I've been collecting and putting together since last year.
Over the next several months through the rest of the spring and the summer, we are going to dive deeper into our options and our choices and food allergy treatments. This is one of the things that shows up the most often in my appointments and my sessions with clients. This is one of the things that I've spent the most time and energy and money on in our own lives with my son's medical care and something that I hear a lot of questions, confusion, misinformation, and overwhelm about in the food allergy community.
Like many of you, when my son was diagnosed with food allergies, the doctor told me there were no options other than to avoid the food and carry epinephrine. I started digging and I found some research, sharing a different story, sharing some things that I got really excited about, that I felt really motivated to look into and to seek out, and I really had to go against the grain in order to do that. It was worth it for me, but I will admit it was a struggle and I'm happy to see that now those choices are more available, they're more mainstream, and yet they're still overwhelming, possibly because there are even more of them than there were before.
So we're going to be talking this season about oral immunotherapy, tolerance induction program, slit or sublingual immunotherapy, biologic medications for different allergic diseases, and even some things that are less mainstream but very exciting to learn about, including traditional Chinese medicine and intra lymphatic immunotherapy.
It all feels so monumental, and sometimes so scary based on the experiences that we've had in the past and how important we know that it is. Most of the people that I work with, and many of you who reach out to me through the podcast or social media aren't just asking which treatment is best. What you really want to know is what will this actually be like? How hard is it going to be? Will I be okay or will my child be okay? What happens if we start and we can't finish? What happens if we make the wrong decision and it's not a good fit for us? All of those things are not small questions. But they all point to the need for mental health support around these decisions, not just medical information.
All of my guests that will be on the podcast this season are experts in their fields and are going to share great medical information with you. Every one of them acknowledged in our conversations that we need mental health support around these decisions and in navigating whatever our choices are. I don't want you to feel alone in making these decisions like I did over a decade ago.
Choice is a really good thing. We want options. We didn't use to have any, and now we do, but we know from psychology research that when people have meaningful choices, they tend to feel better, more engaged, more motivated, more in control, even if they don't choose those options, just by knowing that they exist. But there's another side to this. When the number of choices or the complexity of those choices starts to exceed what we're able to process, it doesn't feel easier. It gets harder.
A lot of people are hearing about these treatments. Maybe their doctors are recommending them, they're learning on social media or from friends and finding themselves putting the decision off second, guessing themselves, not feeling confident even after they have chosen or wondering if they missed a better option. That is all what we call choice overload. It is especially intense in food allergy treatment right now where the stakes feel high and our emotions are already activated.
If you're feeling confused or overwhelmed by these decisions, that's normal. I'm here to guide you through it, and I'm hoping to do that in several ways. You're listening to the podcast. I'm going to have some amazing guests doing these wonderful episodes with you all through the spring and the summer to share up to date accurate information with you. I'll be sharing that on social media and some tips and tricks that I can add into the conversation. If you're not following me already, you can follow me on Instagram and Facebook at the Food Allergy Psychologist. But of course there's only so much nuance and detail that we can get into on social media.
It became clear to me as I was putting all this information together and trying to cover every angle that we still needed more. So I've written a book for you. It's a workbook for patients or parents of patients who are considering or navigating food allergy treatment options like OIT, SLIT, TIP, biologic medications, an overview of the treatments. All of my podcast guests have partnered with me to get that information accurately and clearly into the workbook for you. But I also integrated memoir sections from my experiences with my son and his food allergy treatments, as well as guests who shared bits of their experiences for some of the things that we haven't experienced. And then to help you integrate the information and the concepts that I bring up, I have created exercises and activities. Some of them will be for you as adult patients or parents. Some of them will be things that you can do with your kids to support you through the treatment.
It takes you through all stages from decision making, preparing for treatment, getting started, dealing with bumps in the road, and then navigating maintenance or completion of your treatment, depending on what you choose. It is a guided, practical resource that helps you navigate the emotional and psychological side of food allergy treatment, the part that's often missing. It is called From Fear to Freedom, A workbook for Navigating Allergy Immunotherapy. It is everything that I wish I would've had about 13 years ago when I was making these decisions. My hope is that when you use it, you will feel more confident in your decisions, more prepared for the journey and more supported, no matter what path you choose or how that path evolves over time.
The thing that I want to make sure you know is that this season and my workbook are not about convincing you to do any particular treatment or any treatment at all. I'm not sponsored by anyone. I'm not here to promote a specific path. If you decide to continue careful avoidance and walk away feeling more confident in that, that will be worth it. If you tried something and it didn't go the way that you hoped, there's space for you to process that here and to validate your experiences. This is just about helping you understand your options, understand yourself, understand your child, if they're the one who you're considering treatment for, and feel less alone in that.
I thought I would start out this season by sharing a little bit of our story because I've learned so much professionally. But I feel that what helps me apply it is the personal experience and being able to grasp what these decisions and what everyday life with them really feels like. I've talked in bits and pieces about my son's treatment on social media and here on the show, but what many of you might not know is that we have actually gone through traditional Chinese medicine, the peanut patch clinical trial, slit for environmental allergies, OIT for multiple food allergens, and then another round of slit for more multiple allergens. I can't say we've done it all, but we've done a lot and made multiple decisions and ongoing decision making process and adapting to how things played out. I feel like that's valuable for people to hear, so I wanted to share it with you so that you can benefit from what we learned along the way, as well as to know that you're not alone and I get what you're going through from a very deep place.
My son is almost 15 now, but even before his diagnosis, I knew that he was highly sensitive. One of the earliest moments that has stayed with me was before he turned one, when we were at a baseball game, he was still an infant. He was in my arms the entire time. He didn't eat anything. He didn't touch anything, and he had a reaction that in retrospect with pictures and videos was an airborne reaction to peanuts. I knew in my gut something was wrong, but I didn't fully understand what I was seeing and I never thought that something that serious could be happening.
That pattern continued. He had anaphylaxis from a dog licking him and yes, we looked into whether his allergens were in the dog's food and they weren't. He used to be that allergic to dogs. We had random mystery reactions to things like soap in public bathrooms, touching library books, even blowing bubbles that I later found out had peanut oil in them. I'm not sharing his sensitivity in order to scare anyone. I'm sharing it because I know that there are families out there like us who feel like they or their child are too sensitive for treatment. Their numbers are too high. I want you to know that if it was possible for us as sensitive as he was, it might be possible for you to, and it's worth looking into.
The level of caution that was required to keep him safe was a lot to manage. It definitely impacted our mental health on an ongoing basis and I knew that it wasn't sustainable, but our doctors kept telling me there aren't any options. I did my own research and found things like traditional Chinese medicine and OIT that was being done, and the doctors told me that they were dangerous. They lacked evidence. They even at one point, kicked me out of their practice for asking about it. Finding the path for me was not straightforward. It required a lot of persistence that hopefully you won't need in order to secure treatment now a decade later.
After a lot of work, I finally got my son an appointment with Dr. Xiu-Min Li, who you'll hear from later in the show, who's researching the use of traditional Chinese medicine for food allergies and for eczema treatment. I believed in what we were doing. Her research is fascinating to me, and if there was a holistic way to heal his immune system overall, that's where I wanted to start. We invested a lot of time and money in the treatment, which involved daily baths and creams and herbs that I had to mix into smoothies for him. He was four years old. I had a 1-year-old and an infant at the time, and we kept it up for about a year, but the reality of the regimen just didn't fit well with our daily life. So we stopped when I was able to get us a spot in the clinical trial for the peanut patch.
He was five years old by this point. I knew that that wasn't a full solution because peanuts weren't his only food allergen, but I was excited for the opportunity. During the clinical trial, he had an allergic reaction to the patch. There were six placements on the back. I was supposed to rotate through them where I put the patch. And when I got back to spot one, his skin was still broken and itchy and bleeding. I called the doctor to verify that I was still supposed to put the patch right on that open, broken part of skin, and they said that I was, so, I did, and on the drive to Canada alone with my son to head up to their office, he went into anaphylaxis. After that experience, we were able to get special permission to move the patch anywhere on his back where the skin wasn't broken, instead of those six rigid spots. And after that, he continued safely with that treatment. I am not saying that the patch is dangerous. I'm a huge supporter of more options. We learn from our experience. I was glad that we persisted through that bump in the road, even though that was really tough. All along I had prepared myself for reactions and even though I didn't want to do anything that could cause my son to have a medical issue, we were already having reactions, so the possibility of having a reaction as a result of the treatment felt worthwhile in the short term as long as it was safely managed for the long term reduction of risks anytime, anywhere.
While we were in the patch trial, I kept watching for OIT doctors within a reasonable driving distance of us so that we could start OIT, and I finally found one. When I say driving distance, I mean four hours each way. So then we started OIT for peanuts and cashews, and my son and I drove four hours down and four hours back every two weeks to get that treatment. It wasn't perfect at the beginning, but once we got into a rhythm, he moved through it really well. Surprisingly, he didn't have any reactions that were as serious as the one he had had to the patch, even though he was ingesting them. And of course, I'll never know. Hopefully, my thought is that he gained some tolerance from the patch, but either way, it went really well. Early in the process, his doctor also added environmental SLIT or sublingual drops, which significantly improved his environmental allergy symptoms, and we just continued to move slowly and very intentionally.
At one point in the treatment, he did have an exercise-induced reaction. So those of you who are familiar with OIT know that there's a rest period after dosing of about two hours. Again, my sensitive kiddo seemed like he needed about two and a half hours because just outside that window, he did end up having a reaction. Once we extended the rest period to two and a half hours, he didn't have that issue again. Things went really well and we reached maintenance.
We were in maintenance for several years before my son started to have some mystery symptoms. So we went back, we did more testing. It was frustrating. The testing showed that he was allergic to sesame, which was one thing that he had previously eaten, but then ended up testing positive for, and pecans and walnuts, even though he had successfully challenged pecans in the office. There was some guilt about whether I hadn't kept them in his diet frequently enough and a lot of emotions about that. But what could we do? So we moved forward with considering options yet again.
At that point, my son was older, he was about 10 years old. He was not interested in doing another round of OIT. He was not interested in driving that distance to the doctor again. A local doctor became available, but she wanted him to do two separate rest periods for the maintenance doses and the new doses of food, and he wasn't interested. So I had to respect that. And I'm actually pretty glad we did. He decided to do SLIT or sublingual drops for those new food allergens and it was so easy. Low stress, low anxiety. We didn't have to travel as much. The doctor was able to do virtual up doses with us at home. Eventually, we were able to shift from extracts that were mixed in the office that were quite expensive, to mixing at home with whole food doses. And now my son is in maintenance for all of his food allergens. His environmental allergens are well controlled. He might take an antihistamine two or three times in the year, but other than that, he's doing great.
The most amazing part is watching him eat a bowl of nuts every day for his dose. To see the shift from how dangerous that had been to him, to the tolerance that his immune system built still fascinates me sometimes when I watch him eat them. It's something that I never thought I'd see, and I'm really thankful for all of it, even the bumps along the way.
What was surprising was that even after he passed a 24 peanut challenge, when he reached peanut maintenance, that gave him the option for his daily dose to be eating things like a Reese Cup, Reese's Pieces, peanut m and ms, foods that most kids would be thrilled for their parents to beg them to eat every day. He just didn't want them. He was happy to have the protection, but he wasn't excited about eating a bowl of nuts every day as I was excited to see him do it. He didn't feel like he needed to incorporate those foods into his life. He wasn't missing anything. He just didn't like them.
When we reached maintenance for his other food allergens, then he made similar choices. He didn't do the food challenges that would allow him to do what's called "free eating." Every OIT provider handles this differently, but some doctors will do a challenge to establish that the child can eat the allergen outside of their dose. It didn't matter for my son. And I'm finding that more and more with a lot of the patients that I work with and a lot of the people that I meet. It's not about eating foods. In the beginning I thought that it was, but I can see so clearly now that it's about safety. It's about freedom and choices, and not having our lives be dictated by fear of food.
As you can hear, our road was not straight. It wasn't easy. Again, hopefully you won't have to go to quite the lengths that I did to access treatment. But what kept me going through all of this wasn't just the outcomes on paper. It was watching my son move through the world differently. Not just around food necessarily, but in everything else, activities, social situations, his independence and that layer of high alert that I knew was there, started to soften. He's still really careful. He's so responsible and I'm very proud of him, but there's more ease and confidence and comfort. The food allergies are still a part of who he is, but much less so. And as he's becoming a teenager and gaining independence, my anxiety is a lot lower too.
One nice surprise or bonus of this process was what it did for our relationship. We had those long drives, four hours each way, every two weeks. We spent a lot of time together. Talking, connecting, and going through something really intense together where we developed a trust and a partnership that continues and feels really meaningful. I'm not saying that we couldn't have built that in other ways, but I'm really grateful for the relationship that we built and the closeness that we have that's no longer centered around fear, but around accomplishing something together side by side. I am tearing up as I'm talking about it, even though I've been so busy writing the book because we're somewhere that I imagined that we could be, but sometimes doubted we would get to.
That's why I wrote the book, because even sharing all of that, all of those details and that summary of which treatments we did, it's so emotional and there's still the whole layer of this experience that doesn't really get fully talked about, that mental health side of treatments. I think there are aspects of that that are important to consider before, in making decisions, during, and then after the treatment. For us, it was true that treatment improved safety and that decreased our anxiety. There was some work to be done, but overall it was consistent with what research shows, which is that quality of life often improves for patients and for parents after completing immunotherapy for food allergies. There might be more freedom, more flexibility, and less fear about accidental exposures. But the emotional experience doesn't always follow the same timeline as the medical process.
For many families and patients, anxiety and past experiences are already shaping the process before treatment even begins. Almost nobody is seeking out or considering food allergy immunotherapy from a neutral place. There are past reactions, emergency situations, maybe moments that felt out of control or life threatening, or even if you haven't experienced any of those, if you have a diagnosis and testing that indicates that that's a possibility, that information and those experiences live in the body and in the way our nervous system navigates the world.
So, when you are asked to consider a treatment that involves intentionally exposing yourself or your child to that allergen that you know is legitimately life threatening for you, that can bring up a lot that seems to either motivate patients and families towards treatment because they want more safety or more protection, or quite the opposite. For others, it leads to stepping back, avoiding treatment altogether because the nervous system is too loud and the fear is too powerful saying, "I could never do that. It feels too dangerous. I couldn't risk it." That is a protective response that's valid, too.
My goal is for everybody to make that decision, not from fear, but from information. If you do move forward with treatment, it often gets pretty complex because anxiety doesn't just disappear once you start and is often the highest leading up to and at the beginning stages of treatment. Some of the patterns that I see include patients becoming increasingly anxious about their dosing, resisting, delaying it, refusing it all together, and very real symptoms of anxiety that are difficult to differentiate from an allergic reaction. A tight throat, stomach discomfort, flushing, changes in breathing, all things that anxiety can cause that are very real, that feel almost identical to an allergic reaction. People find themselves in a position where they're constantly asking, is this anxiety or is this a reaction?" And that is one of the reasons that a lot of families choose not to do or to discontinue treatment, not because they don't want the outcome, but because the process feels too overwhelming.
For most people, I have found that if they keep moving through treatment that decreases as they move along, and a lot of people, even those who are very anxious when they began or in the early stages of the process, do manage to complete treatment and to do really well. Sometimes the anxiety naturally improves along the way, and other times it doesn't resolve right away. That can be confusing too. From the outside, it can look like we did it. We're safer now. Everything should feel easier, but the nervous system doesn't always update that quickly and catch up. If someone has spent years associating certain foods or environments or situations with danger, it can take some time and sometimes intentional work and support for that to shift. It's important to hold the full picture because overall the research does show meaningful improvements.
After OIT, quality of life tends to improve, parents often report reduced anxiety and increased confidence, and families have greater flexibility in their daily lives. So both things can be true. Treatment can improve the quality of life, and there can be emotional challenges along the way. These are the things that I wanted to expand the conversation about by writing the workbook, because we don't talk about these pieces enough ahead of time. Patients and families can feel caught off guard, or they might interpret these experiences as something is going wrong or them not doing it right or making the wrong decision when in reality these are very understandable and common responses to a complex process. If you're considering treatment or you're already in it, I want you to hold this gently.
You're not just making a medical decision, you're entering an experience that involves your nervous system, your history, your emotions, and your daily life, and all of that deserves attention and support. The goal isn't to eliminate all of your anxiety or to find a perfect path that doesn't make you feel nervous. It's to move toward decisions that feel aligned, supported, and sustainable for you or for your family, to have more language for what you're experiencing, more tools to navigate it and more support along the way. It is my hope that this series of episodes and the workbook, for those of you who are interested in it, will help you to not feel alone, and to help you go into this feeling more informed and aware. This is just the tip of the iceberg and what's to come this season.
Here are some action steps to help you get the most of what's to come.
Number one, please listen with an open mind. If you are curious about this, I really encourage you to listen to all of the episodes, not just the ones for the treatments that you are considering. Being exposed to more ideas can help open your eyes to something that you might have misunderstood or didn't realize would be a good fit. And if it's not a good fit for you, it can make you feel more confident in what you are choosing and why that's a better decision for you. If there's someone in your life that you know who is considering treatment, scared to do treatment, but it's been recommended by their provider, or maybe someone who's in the midst of treatment and navigating that process, please share the podcast and this season of episodes with them so that they can learn alongside you.
Number two, stay connected and follow along. You can subscribe to the show. As the season builds I don't want you to miss these conversations. You can also follow along on social media at the Food Allergy psychologist or sign up for my newsletter on my website, the food allergy psychologist.com. In all of those places, I'll keep sharing announcements about the book, From Fear to Freedom, where you can find it, and when it will be available in June.
Number three, start noticing your own responses as you hear about different treatments, just gently observe what feels interesting, what feels overwhelming, what feels tempting, what do I feel drawn to? What outcomes or emotional experiences that people have had, am I looking for or do I want to avoid? Observing your reactions and your responses can help you in the long term to make decisions that are a good fit for you.
And last, I want to say a huge thank you to all of the guests who are a part of this season. It's really an unbelievable collection of guests. They were all so incredibly generous with their time and expertise, and they're truly the best of the best. Thank you to all of you listening, for being here, doing this work, and for continuing to show up for yourself or for the person that you love with food allergies.
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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.