#94 A Parent & Psychologist’s Perspective on the Emotional Side of Food Allergy Treatment with Dr. Elizabeth Hawkins

Food allergy treatment looks very different today than it did 17 years ago.

In this episode, Dr. Elizabeth Hawkins joins me for a deeply personal conversation about navigating food allergy treatment as a parent long before many of today's options were readily available.

Elizabeth is a psychologist, celiac patient, and a celiac and food allergy parent. Her younger daughter has a complex history of multiple severe food allergies alongside asthma, eczema, and environmental allergies, and their family has navigated multiple forms of treatment. We talk about how her experiences shaped what she sees as a psychologist working with food allergy families. We also explore what parents facing immunotherapy decisions today can learn from those who have been navigating these choices for years.

This conversation is about more than choosing a treatment. It's about living with uncertainty, knowing your child, making decisions within the reality of your family's circumstances, and finding a way to move forward without letting fear make every decision for you.

Follow Dr. Hawkins on IG @foodallergypsychologist and dr-elizabeth.com

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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Elizabeth 0:00

I sometimes think I'm a translator. There's a way that you can take that information and then put it into the real world lived reality of food allergies that just makes us seem easier to understand and then be able to do something about an act on.

Speaker 0:17

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. If you think making decisions about your child's food allergy treatment now is difficult, imagine doing it at a time when the treatment options that we talk about today barely existed. They were brand new. There was limited research. Hardly anyone was offering them, and therefore, hardly anyone was doing them to connect with and compare notes. Today's guest has done that, and it's only a part of what makes her so special to me. Dr. Elizabeth Hawkins is a licensed psychologist, food allergy parent, and her professional work is deeply informed by her personal experience of over 17 years as a food allergy parent and living as someone with celiac and a parent to another daughter with celiac as well. Elizabeth's daughter with food allergies has had a very complex journey, which she'll tell you about, and the two of us will dive into our thoughts and our many overlapping roles in our lives as food allergy moms who have sought out treatment for our children and work with other families who are doing the same thing in the role of a psychologist. This conversation is full of gems and wisdom about what Dr. Hawkins wishes parents knew when they were standing at that crossroads now trying to decide whether treatment is right for their child and their family.

Amanda 1:48

I'm so excited. Today we have my colleague and my friend Dr. Elizabeth Hawkins here on the show. Elizabeth, thank you for being here on Don't Feed the Fear finally.

Elizabeth 1:56

Thank you for having me. I'm so excited to talk to you and to be here.

Amanda 2:00

I am too, and I'm here in the middle of this season on food allergy treatments, and you're kind of like my family. You've been through the ringer with it, so I thought that'd be really valuable for the listeners to hear about.

Elizabeth 2:10

Sounds great.

Amanda 2:12

Can you start out by just giving them an idea of your background and how food allergies showed up in your family?

Elizabeth 2:19

Sure. I guess just like a step way back, I'm a psychologist. I'm a licensed psychologist with a degree in child psychology and I specialize in working with anxiety disorders, OCD, parenting, mind-body health, things like that. And then I became a food allergy mom in 2008. That's my younger daughter who's now 17, has food allergies. And my older daughter has celiac disease. I have celiac disease. And because of some of those experiences, I have this private practice that focuses a lot on the allergy focus for patients and families. Probably like a lot of us, my introduction to food allergies was abrupt and kind of slightly traumatic when my daughter was about six months old. So she had started having problems immediately after birth in terms of severe eczema. She was really fussy. She cried all the time. She pulled off her skin, she pulled out her hair and she was really miserable. And so we were going to doctors trying to figure out what was going on, and we were going to dermatologists because of the eczema. kept prescribing different steroids and higher and higher strengths and potencies of those. And it wasn't really helping her skin. She wasn't gaining weight, she wasn't sleeping. And, we just kind of went on like that. And then about six months old, we started introducing foods and she had her first anaphylactic reaction sitting at a table. So she hadn't actually consumed any of the allergens. She was just sitting there while the rest of us did. She was only eating pears, which was the first food I ever tried to feed her. She was exclusively breastfed up until then. She had an anaphylactic reaction, which I did not know was anaphylaxis at the time. And that kind of started us into our journey to learning about food allergies. She had, um, multiple reactions after that as we would introduce new foods. At that time, we were getting some pretty bad medical advice around what to do. We weren't being taken seriously, not being referred to an allergist. Even though I would ask. I would ask each of those dermatologists. Our pediatrician could be something I am eating that's affecting her. They'd say, no proteins aren't, are too big to pass through breast milk. Don't worry about that. And so she's having these reactions. I felt like I wasn't being listened to. And so after about two months of that fired, our pediatrician, found an allergist online who we were really fortunate, was about a mile and a half from our house and ended up being a pretty cutting edge allergist, and started seeing him and we went through skin testing at that point in time. She was probably nine months old when we started that, and just doing the things that she had been exposed to by that time, or the things that maybe you would expect to feed a nine, 10 month old baby who had no teeth. through that, found out what she was allergic to, what she wasn't, did oral food challenges for the things that she hadn't yet been exposed to. We introduced them in the office and eventually sort of coalesced into a steady group of allergens. So those were not part of her diet. She was still having really severe eczema and skin issues. And so kind of off of a hunch, my gut instinct, I cut them out of my diet and she became a different child overnight. Her skin cleared. It was beautiful. Like the beautiful baby skin that you hear about. She started sleeping through the night. She started gaining weight. She was happy all the time. It was just a remarkable difference. So that's when I really realized, okay, I have to listen to my own intuition about what's kind of going on and try to take care of her the best way I could. And then from there, adding allergies and all of that. But that was the start.

Amanda 6:00

Yeah, and I think I remember, but I just wanna clarify, you didn't know yet that you had Celiac or that your older daughter had Celiac at this point? Correct.

Elizabeth 6:10

The answer to that is not entirely clear. So I had actually been diagnosed with Celiac before even my first pregnancy, but it was based on blood work and the gold standard is a biopsy. And so I had my doctor at the time had insisted on just going off of the blood work. I did my research and said, I want a biopsy. And the biopsy came back negative. So I had the antibodies and I had a negative biopsy. And so I actually, for six months I was gluten free. I didn't feel any different. I went to some other gastroenterologist and they had. Said don't worry about it. Just eat wheat, don't worry about it. Live your life. And so that was kind of the answer I wanted to hear, to be honest. And so I heard it and I went back to eating wheat. But then fast forward, I guess about 10 years, my daughter, my older daughter started having issues. And I think because of all that research I had done, she started having skin problems. I looked at it and I was like, oh no, I know what this is. I know what's going on. And so I went to try to get her tested and they again, I think, thought I was a little bit crazy. Why would you ask to have your child tested for either dermatitis herpetiformis or celiac disease? And that's when I was like, okay, I have to get diagnosed. So they made me go get diagnosed before they would and check her. So an easy answer, but that was the journey

Amanda 7:32

Well, none of this is ever easy answers, unfortunately. I think there's very few of us who have just a simple little story about how this unfolded. And one of the things before we get back too much into the food that I wanted you to share, if you're comfortable, I know for your younger daughter, the skin has been an issue too with sun and cold, and I think that just adds another layer of complexity. If you don't mind sharing that piece of things too.

Elizabeth 7:56

Yeah, I, you know, I think we were starting to get a feeling like I was finding my rhythm and getting a handle on the foods. And the summer, she was two, almost three, she had an anaphylactic reaction while swimming in the ocean, at the time I did not know that was a thing. I had never heard of cold induced anaphylaxis. And I did probably all the wrong things that you could possibly do in that situation because I think I kept thinking, was she stung by something? She had not eaten anything. My mind didn't go to an allergic reaction.

Amanda 8:26

Right.

Elizabeth 8:27

But she had a full anaphylactic reaction and through that she was diagnosed with cold anaphylaxis. And then a couple years later, both of my daughters started having reactions to the sun and were diagnosed with solar uticaria. So they get rashes and hives over any skin that's exposed to the sun. So it's kind of been interesting to have the food and so we had eczema, we had the food allergies, we had asthma already, then we had that, and then other environmental allergens kind of came on board or were diagnosed later on. But the full gamut, yes, she has just a very reactive body.

Amanda 9:06

Right, and I was thinking it's so hard already managing food allergies. I just can't imagine dealing with that on top of the food and all of the other stressors. It just sounds so tough.

Elizabeth 9:17

I guess the good side, we live in Seattle, which is fairly far north, and the sun is not that strong. And so most of her reactions have been when we go to someplace like Hawaii or Mexico that is closer to the equator. We do have them here in Seattle, but they're not as severe. And I, I guess the, the other thing, at least in our experience is she's never had an anaphylactic reaction. So she's had the skin, the rashes, and the hives, and she's very uncomfortable, but there's no forbid any other systems involved. So that one is a complete pain and no fun whatsoever, you know, especially when you're young and you wanna be playing outside in the, you know, in the sun and riding your bike. But it felt at least a little bit less threatening than definitely the cold anaphylaxis and the food allergies.

Amanda 10:05

Yeah. Well, and that's such a food allergy mom answer. Like, at least it's not anaphylactic. We can deal with it. I can

Elizabeth 10:11

handle that one.

Amanda 10:12

Yeah. So as things progressed, what was tough and what were you figuring out and what were you not figuring out that led you to decide to start with treatment?

Elizabeth 10:23

The other thing that I think is just important context in my experience was literally like the day my daughter was born, and I was in the hospital was the first day I, my mom came to visit and it was kind of that sinking feeling where I was watching her interact with my daughter and I really had to just accept there was something going on with my mom. She had been having some really bizarre, weird behavior for the whole year before that, and I think people were finding all sorts of different excuses and you can kind of excuse it away. But in that moment, while I watched her as I had my brand new newborn and she had her arms out to take her. She was standing there, she wanted me to put her into her arms, but her arms were not together. They were apart. Like it was kinda this bizarre thing and she was like wanting me to put the baby in this open space where she would fall on the floor. And like in that moment I was like, oh my God, no. And something's really wrong. So obviously, I had her sit down to hold the baby in that moment, but those first kind of couple years of my daughter's life, I was navigating my mom the last few years of my mom's life. So, I was going to doctors for my baby because of the eczema and the allergies, and then I was like strapping her on me. I wore her all the time, and I was going to doctors and neurologists with my mom trying to figure out what was going on with her. she ended up having early onset dementia. So there's this other story like that really intersects with our treatment journey because we were fortunate that that first allergist we had was one of only a handful doing private practice, OIT. This was 2008, 2009, really early pioneer in the field. So from day one, he had talked to us about OIT and even multi food OIT, which was unheard of at that point in time. She was about the most allergenic kid he had ever seen. I think there was part of him that maybe was excited about thinking about the treatment possibilities with her. So it was on our radar as something, but he did not start kids at that point in time until they were four, because he wanted them to be able to have the verbal skills to be able to say what was happening in their body. So between zero and four, we definitely knew a lot about treatment, but it was kind of out there as like, we don't have to think about that just yet.

Amanda 12:39

Mm-hmm.

Elizabeth 12:40

Then when we hit about four, that's when my mom was in the last months of her life and she passed away. And so I wasn't ready, like just emotionally and logistically, I was not ready to deal with that. And there was no rush. It felt like there was no rush. We didn't know then what we know now about the benefits of early treatment. So I think the wisdom was let's just try to do something before adolescence when her immune system starts to harden a little bit more.

Amanda 13:07

Okay.

Elizabeth 13:07

so, um, I gave myself the grace to say, there's no rush on treatment. We can wait. And then when she was probably about six, I was like, okay, I think I'm ready. And she was not ready. So by that point in time, she started having her own pretty strong opinions about it and thought her life was working really well for her. We talked through what it would involve and it's a lot, and it would mean missing out on school and activities. And there was the activity restrictions and. And I think she was really not wanting to do it and it, not that we gave it to her as her choice, but we certainly listened to her voice. And at that point also it didn't feel urgent. It felt like we still had time and no need to push and overpower her. So we did not pursue treatment. So from the time she first was diagnosed, I insisted on yearly skin tests and challenges if there was anything we thought maybe she might be outgrowing or in the process of, and because of that, we were able to add back at least one food every year till she was about five or six. As an infant, she had allergies to seven of the top nine plus about 20 other foods so we had something around 25, 30. and so I was of the mindset of if we can add any food, we can add back in is a win. And um, so we were able to, and some big ones, like she was able to start eating wheat, um, which is ironic since then I was, you know,

Amanda 14:39

Okay.

Elizabeth 14:39

celiac disease was an issue. Coconut so then she could have coconut milk, which is nice and fatty compared to rice milk, which is the only milk she could have. And so right around this time where she was kind of saying, I don't wanna do OIT, it looked like maybe her allergies to egg and soy were maybe not as severe. And so we did what I considered at the time, modified OIT we call them food ladders now. And so we were able to kind of just start feeding her small amounts and she seemed to have reactions scale back and wait a couple months and give her a little bit more and kind of go back and forth. But during that time, she then learned to tolerate egg and soy. And so even though we weren't doing official OIT, I still feel like we were making progress on her allergens and getting more foods into her diet. So, I know this is a really long story. I apologize.

Amanda 15:39

That's okay. There's a lot to it. It's not simple. That's why I wanted to have you share because it's complex. I think people with a complex story like yours feel like it's too much. Like I can't do it. And that's why I wanted to have you on. So don't, don't edit. Go ahead.

Elizabeth 15:53

Thank you. I know it, it's hard to put it into like short little bullet points, I think,

Amanda 15:58

Mm-hmm.

Elizabeth 15:58

To try to explain it all. So that was my mindset. We don't have to push. She's already adding these foods in. We've gone some pretty significant wins. To this day. Tofu is her favorite food. Like she loves soy. And those other foods that she had added in, she actually enjoyed them. So it wasn't just she was able to eat little amounts. I also was thinking, okay, maybe she would be also outgrowing other of her allergies. And so also thinking about that tension between do you decide to treat something that they might outgrow naturally or do you do something to accelerate that? So there was a lot of that thinking at that time. But she was also adding new allergens. So as much as she was outgrowing them or we were accelerating that process, she was also adding new ones as her palate became more sophisticated and we were trying new things for her. So she was still dead set against OIT. And then we moved and we switched allergists and our new allergist did slit. And I had never even really heard of slit before. But he talked to us about slit, and she was okay with that. She was much more on board, it seemed like a more gentle protocol. Far less risk of reactions, and not the same kinds of activity restrictions as OIT. So we started slit. His philosophy was, he didn't like to mix the, what he considered the really severe allergens with the less severe allergens. And so we, we sort of built a little bit of a hierarchy and thought we'd start to try to tackle maybe the ones that we either thought were the least severe or the easiest from his experience to maybe treat. So that included like mustard and celery. And we threw some tree nuts in there. We threw in, like pea protein and milk. She got to maintenance on SLIT. No problem. It was pretty easy. The pandemic happened, and then just kind of stayed there on maintenance SLIT for a pretty long time because they weren't doing OIT and they weren't doing oral food challenges. The plan had been to then start other rounds of SLIT for some of the other allergens. But those were custom extracts. We were starting to get into some of the more obscure allergies she had, as well as some of the big ones like peanut or sesame. So we just hung out for probably more than a year on maintenance SLIT for those. And then when things started opening up a little bit more and we started doing challenges. She had anaphylactic reaction to oral challenge for milk and for tree nuts. So we didn't get very far with that, but she was able to do, get to free eating for celery and mustard, which don't sound like they're that hard. But it's actually amazing how much mustard and celery are in things. So I was really excited that mustard and celery were now part of her diet. But we realized, okay, so SLIT didn't do what we had hoped for some of those other allergens we're gonna need OIT. We're getting to a point where it's like, okay, she's fast approaching adolescence. We really have the big ones still left, and what are we gonna do about that? And at that point, I think OIT became the obvious answer. That we needed to really push through and do. Oh, I should also say, the thought was that she had never shown signs of environmental allergies like pollen allergies or dust or any of that, but we had gotten a bunny. It became clear that she was having reactions to the hay, but not typical reactions, nothing that looked like seasonal allergies. It was more like she had a low grade fever for two months and her immune system was activated. And this was also during COVID so you know, every little fever, it's like, is she, she about to come down with COVID? Is she sick? How could she be sick? We haven't left her house in two months. Like there was a lot of, you know, that. And then I had the light bulb moment of like, oh my gosh, I wonder if it's the hay. And you know, as soon as we separated her from the hay and she wasn't handling it, that stuff went away. So that led her to getting extensive testing for seasonal environmental allergens, which she had never been tested for because she had no symptoms. Whereas my older daughter has really obvious symptoms and we had tested her. So it came back that she was actually allergic to a lot of environmental allergens that we did not realize. The allergist thought perhaps she is having more internal symptoms, so they're not coming out in runny nose or sneezing or red eyes or any of that stuff. But there is some more internal inflammation that's happening. And so we started allergy shots. So we started that before we did OIT. So SLIT, allergy shots. And then, when she was in maintenance for that, we did our first round of OIT with peanuts and tree nuts it went really well. And I think maybe it went so well that we decided to kind of push through another round right away of OIT for sesame, pumpkin seeds, and chickpea which is a weird mix. At that point, she was almost 14 and she was about to go into high school. And so it seemed like this is the time to really kind of try to do that. And if we could get through those foods, we were in a much better place. And throughout our entire journey, the thing that's always hung out on the side of like, we don't know what to do about that, is, is dairy, it's milk and it's cow and go and sheep's milk. But no matter what we did, it's always just been a problem. It's still a problem. Even though it was not by any means, her worst in terms of skin testing or blood work, it's been the hardest to treat and the most persistent. So that, I guess is, would lead us almost up to the current time. We finished that round of OIT, got to maintenance, but then she started having some GI symptoms. And some routine blood work that she just did on her annual physical, showed elevated really, really high levels of eosinophils. So she was diagnosed with eosinophilia, not EOE because she wasn't having problems in terms of swallowing. There were lower GI problems. As soon as we got to maintenance, we ended up scaling back her doses. We immediately cut them by half, and were monitoring just how she was feeling, but also her eosinophil count, and trying to kind of see, we could see based on what we're doing with the doses, her eosinophils would go up or down, but we're trying to bring 'em back down into range. And also testing her for parasitic infection because the allergist thought maybe she had a parasite because the eosinophils were so high. We kind of cut way back on her doses. It caused us to rethink our goals for treatment in general and decide what to do. And in the end, we never built back up to maintenance levels. We kind of decided are foods that she never wants to eat. She doesn't care about that. She doesn't like 'em. She eats them for her doses, but they're still quite aversive to her. Kind of just leaned into the low and slow mindset. We're just gonna keep exposing her immune system so it sees it regularly and knows it's not an enemy, but we don't need to necessarily go far beyond that. And then around that same time, Xolair got approved so she was able to go on Xolair and through Xolair then we then started a new round of oral food challenges. With Xolair on board and probably the SLIT and some of the other things we had done, she was able to actually pass challenges for lentils and chickpeas she was able to get to with milk a 0.5 milliliter dose. So a pretty tiny dose, but it felt like something. so with Xolair then, we have reintroduced milk into the rotation at a very small level. And then just kind of, like I said, we're just keeping exposure, but it's a lot more relaxed now than it was when we were in the active or new maintenance phases.

Amanda 24:07

Yeah. You talked about when she was younger and she was a hard no on OIT and it shifted over time. Probably some of it was age, but I find it so interesting what kids are interested in and what they're not. I just think it's very telling how some kids know what they want and what they're not open to, and so I love that you respected that and obviously changed over time and you had to keep going with the flow as the world changed, and her body changed, and treatments available, changed, like you've been through it for so long with so many things.

Elizabeth 24:35

Yeah, and I, you know, I think she also grew up a little bit more and was able to understand some of my whys. So at six and seven, the reasons I wanted to do treatment didn't sound really important to her

Amanda 24:47

Mm-hmm.

Elizabeth 24:47

She couldn't even really visualize a time when she was going to be independent and beyond her own. So the idea of going off to college or, you know, dating and marriage was so foreign to her. And again, her life was working great for her. She was having a wonderful time doing all the things she was doing because I was doing all the invisible work behind the scenes that enabled that. but I think by the time she was a preteen and we were having those conversations, she could see it. She was so much closer to that, and I think she could understand the importance of getting to a place where we didn't have to worry about cross-contamination and that she could be bite proof, which is always our goal for everything. I don't really care if she eats any of the foods she's allergic to. I don't have any beliefs built around this food is wholly and needs to be, is so important that it needs to be part of your diet. If she enjoys it, I want her to enjoy it, but if not, I don't care. But I do care about her not getting sick and not being in life-threatening danger because of food. So, you know, that was it. And she could get that at that point. And she had had, she had also had all those reactions during oral food challenges and treatment that I think she also kind of really understood, oh, this is really serious and, and this will help buy me that protection.

Amanda 26:01

Yeah. Well and now she is getting older. She's in the older teens, she's nearing the end of high school and transitioning. What does she say about her treatments now and what she wants to do moving forward and what are her thoughts on the whole process and future?

Elizabeth 26:16

That's a good question. She should be here to answer probably rather than me. I think she still takes the perspective that she's okay. She's okay if she has to avoid things directly. And we have not treated all of her allergens. There are still some that actually just kind of didn't make sense. Like she's allergic to kiwi and a hemp protein, when you really get to the maintenance, you realize how many different foods they will have to eat potentially for the rest of their life. It's a lot, it's a lot of volume and it's a lot of like calories of food in terms of how much it takes up of their daily allotment. And so, know, I think there's already these foods that we have sort of consigned to the, they're really easy to avoid and treating them and then having to eat them every day in a large enough quantity seems so onerous. It's not worth it.

Amanda 27:07

Okay.

Elizabeth 27:08

So she feels that way, probably more about like dairy. Whereas I think, I think dairy is just such a common food and it's so easy for cross-contamination that she and I might have a little bit difference of opinion about a couple of foods. But overall, I think she's grateful for the protection she has. I think she appreciates the independence it buys her. Now she's 17 and a half, and she's working and driving and doing sports and you know, she has a very independent life that she's able to manage on her own. She manages her doses. I still sometimes help prepare some of the ones that need to be weighed out. Um, but for the most part we have a basket in our pantry that is all of her OIT foods, and she just, she gets 'em when she gets 'em. And honestly, I kind of keep half an eye on it, but I kind of am letting her manage that and do it how it fits into her day because I know long term she has to be the one who wants to keep continuing to do this. I can't do that for her. As a parent, I have had to step back and bite my tongue a little bit and, and just kind of trust in her in the process. But she is like, probably, I think most all food allergy kids, she is fantastically responsible and cautious and really smart and careful about how she goes about her life and her health.

Amanda 28:30

Yeah. Yeah. Well, I'm glad that you both found your way there. I mean, like you, we said there's a lot of ups and downs and question marks still, but. Overall, would you say was a positive experience for you, for her?

Elizabeth 28:44

After that last round of OIT and the GI problems, which continue till today, that's not been fun for her. There's maybe a little guilt. I, I sometimes question my choices as a parent. I think we all do. It's so hard to know what could have been otherwise. But, um, yeah, I think overall, I think she appreciates what going through all that has, has earned her. And she's worked very hard to get there.

Amanda 29:11

Yeah. It's impossible to answer, but do you think you would do it again knowing what you know now, and knowing what the process is like, and what the outcomes are for her specifically?

Elizabeth 29:23

Yeah, for sure. But I would, if, I mean, if I could magic wand this and, you know, have the knowledge and, and skills I have now and go back in time, I would do it very differently I think. But I still would absolutely. I would still choose treatment. I might order it differently. I might slow it down, you know, like I think I would change a lot of things about it, but I would still do it. It just does get them a lot of protection in this world. I think it's hard enough to be a teenager or a young adult or adult. It's hard to be human and, and so, you know, to kind of be able to ease off this one a little bit and make her life easier, I think is really worth it.

Amanda 30:03

Yeah. Well, it might be hard to express, but can you try to sum up what you would tell yourself or what you would tell people listening obviously who maybe are beginning the process. Some of that you just couldn't know until you challenged or tried the foods, but the parts that you wish you would've known. What would you tell people moving forward to make it easier to help them navigate it, make decisions that work better for them?

Elizabeth 30:27

That's such a hard question. If I could understand what we now know, our scientific understanding, I would've obviously done treatment early, probably before she was old enough to have an opinion and I was still firmly in control of things. I would've done that. I would've tackled things maybe more systematically, and had a longer term plan. Maybe I would've done OIT for some stuff and I think I would've done SLIT for others and just thought, it might take many more years to get there, but she might get to the same place and, and not have the burden of the daily doses.

Amanda 31:03

Mm-hmm. Mm-hmm. Yeah, I, and you know, we've talked about this, I feel the same way about SLIT. It's the same principles, and yet it feels like a completely different treatment to me, at least in, in our house.

Elizabeth 31:15

absolutely.

Amanda 31:16

So, what have you learned then? What did you carry into your practice with the clients that you work with, based on your experience?

Elizabeth 31:23

Yeah, I'm sure you have the same thing. Like, I think I do have this depth of experience, like 17 years of it now, and I think I have to be really mindful that my experience is not everyone's experience. So I, of course, I think I bring some like factual scientific information and education that has been earned along the way, and I have my own path, but that's not everyone. So I, you know, over and over again, I think the, the thing that always sticks with me is. Um, it was this way for me, I think it's this way for a lot of food allergy parents. It's a lonely, isolating experience and the ability to talk to someone who's been through it and who gets it, even if nothing changes, is so powerful and transformative. And so in some ways I think just having gone through it, it might be the biggest thing. It's not even a skill I can teach them, it's just I can listen to them and I can empathize deeply and I can validate that they're not crazy and they're not overreacting and all of those things. So I think there has been just a lot of that that is really valuable. Having a background in treating anxiety is a, a very natural fit for this population and the, a lot of the principles of treating anxiety are similar to immunotherapy. We're doing that kind of just right dose desensitization, but to emotional experiences. And so I think that is something, especially as treatment is now so much more understood. I can relate things I think in a way that another therapist would not necessarily. I hear that from my clients all the time that they, they have a very different experience in therapy with me because of that. I dunno if you think of it this way, but I sometimes think I'm a translator. There's a way that you can take that information and then put it into the real world lived reality of food allergies that just makes us seem easier to understand and then be able to do something about an act on.

Amanda 33:30

I totally agree. I think of it as those two parts, the translation and the ability to help them understand what's ahead and what it involves. But then back to what you said about just the fact that someone understands, and, you know, I'm, I'm so nervous system focused, and I can see their whole nervous system, their whole body, their whole facial expression change when I disclose a little bit of that, and we talk about it in session, there's this entire shift that I can see the nervous system dropping into this sense of safety that they feel with us because they know that we get it. And I think that relieves a lot of the barriers that exist in other dynamics.

Elizabeth 34:07

Absolutely.

Amanda 34:08

What do you think people need more of? What did you need more of as you were going through it? You mentioned support and the isolation being a factor. What else?

Elizabeth 34:16

Yeah, that might be a really big one. I think in terms of both the mental health components and also the allergy management components, just a lot more education, a lot more awareness.

Amanda 34:29

Mm-hmm.

Elizabeth 34:29

I think we had a great allergist and he did talk to us a lot about OIT, but he didn't talk through the nuances of it in a way that I think really prepared us for it when we got there. One of the most important things he said to me early on was, don't try to control the environment to control your anxiety. He's like your daughter has a very complex set of allergies and she's gonna have to navigate in this world. Don't think that you have to modify the entire world around her. And he's right. And I really took that to heart and I think that also shifted my perspective because if left to my own devices, modifying the entire world around someone is my natural instinct, especially when it's my child and wanting to kind of control and set things up, like that is where I would like to go if I could just give into that. But I know that that doesn't serve her and set her up for developing good coping skills and resilience. So I didn't do that. That's an issue that comes up a lot in therapy is that relationship with control and this relationship with risk and uncertainty and it's a thing that we deal with in our life all the time, but somehow food allergies feel different and it feels different when it's our teeny, tiny, little fragile, vulnerable babies. It's so hard to think about. I think something that could harm them and to kind of actually think about risk tolerance, it feels like it needs to be a zero, an absolute none tolerance for risk. So I, I think maybe having more honest conversations around that piece and that you can't control the whole world and you can't control, you don't know what everyone else is eating on the playground and you don't know what's on their hands and there's just so much of that unknown. And, and so instead of trying to drive yourself crazy about that, what can you do and what are the protocols you can set up to keep your child or yourself safe? It's a mindset and it's also a skillset that I wish had. I developed it I think through hard experience, but I wish someone could have sat me down and helped me with that. And that's something I like to do with families is to be able to walk them through that.

Amanda 36:46

Mm-hmm. Well, and you touched on a part of that too that I think is really important. Some of us have really scary experiences immediately that I think can linger and shape our whole motherhood experience. As far as what you said about these are our tiny, helpless little babies. It's our only job to protect them and keep them safe. Do you see that showing up and affecting how people make decisions, how they pursue treatment, how they experience treatment, if they do pursue it, kind of based on what you're saying with those early experiences that were really tough?

Elizabeth 37:17

Yeah. And you know, trauma is, it's like your, you know, one of your specialties and thing you talk a lot about, and I've learned a lot about that from you actually. And, you know, I think about anxiety and trauma a little bit differently than I used to actually. But I think we also have to really appreciate that we bring to parenting in the first place, our own unique temperament and wiring and nervous system and all those experiences that happened before we were a parent, and obviously our own childhood experiences. And as it is, having a child, changes the dynamic of your own mental and emotional balance and wellbeing.

Amanda 37:58

Mm-hmm.

Elizabeth 37:59

about having any kind of extra things like allergies to deal with. The allergies can bring up something that is way older than the child is, or the allergies are. And honestly, being able to really understand that, that it's coming out in the now, but it might be about something that's really older and how do we work with some of that? And then there's the trauma of actually having allergic reactions and all of that. And, you know, the, the medical trauma that a lot of us have gone through of not being believed and kind of having some of those doubts and questioning ourselves.

Amanda 38:33

I think that's so important, how many of us have these experiences of not being believed, being dismissed, even by our doctors? And I'm not, I know neither you or I are knocking our doctors. There are some amazing allergists out there, but information is changing so rapidly. Everyone's not up to speed. Um, many of us unfortunately, have had experiences with our doctors where we now feel like I just have to be responsible for everything because I got bad information, or they just didn't believe me in the first place. So that's a big shift that people have to make too, then to move forward into treatment and trust a doctor to provide that treatment that obviously we're assessing the risk and balancing that. Um, so I'm just curious if you have insights on that in terms of that shift from mistrust in doctors of the medical system to now I'm putting my or my child's life in your hands to treat this with this treatment where we're exposing them to.

Elizabeth 39:23

Mm-hmm. I think more than anything, what my experiences along those lines have taught me is to trust myself. Because at every step of the way, my insides, my gut, my mind was screaming at me. Like I always heard something as the, the other person is saying something to me. There was something happening inside me that was resisting that I'd be like, mm, really? Or I don't know, or I, it doesn't sound right. Are you sure? But we're taught to trust medical providers as authority figures and, and I'm not a doctor, so, or not that kind of a doctor at least. So, you know, kind of fall back into, I guess they should know. But inside I, I think I really learned to trust myself. So that was a lesson I took. And so then even going forward into things, you know, where it's like, if this doesn't feel right, stop. Being okay stopping. And for me, part of my journey, um, and just kind of as an aside, like I think our kids are there, are here to inspire us. They can inspire us to figure out where we need to grow. And this was for sure where I needed to grow. So I needed to trust my intuition, listen to myself, trust myself, then I needed to be okay being disagreeable and not in a reactive way, but in a way where I was comfortable saying, can we pause? I'm not sure. Or something about this doesn't feel right to me, or, um, I need to think about that. I'm not ready to make a decision just yet. Like whatever it is. I had to learn those skills because as kind of a people pleaser and, uh, you know, a conflict avoidant person, you know, it's like the doctor said that, okay, I guess I have to do that even though it doesn't feel right. I think we can learn to listen to ourselves and trust ourselves a little bit more. I think we can develop really good communication and advocacy skills allow us to give voice to those inner misgivings, and then try to resolve them. And maybe we share them with that person and then we hear how they respond, which I always think is great information. They heard what I was saying, they took it seriously and they

Amanda 41:34

gave me

Elizabeth 41:34

an answer. Or did they dismiss me? And I think those early experiences taught me, like, if someone is gonna dismiss me, minimize me, pat me on the head. I, I'm sorry, that's not the right provider for me.

Amanda 41:44

absolutely. Oh my gosh. So many gems in that response. Touching back to what you said about a lot of those things that you just described that are coming up are coming from way before parenthood even. I mean, you know, if you're a people pleaser,

Elizabeth 41:58

Yes.

Amanda 41:58

Many of us are, especially those of us who are socialized as female, that is something that you can work on and be aware of that's not just who you are, that you can't learn to change. And it's probably tied to something about your past that has come along before your child. So I love that you're bringing that up. Our communication skills too, right? Like if, if we were conditioned to communicate in a certain way that's not effective in this situation. Um, then yeah, those are such important things to be aware of. So thank you for bringing all of that up.

Elizabeth 42:26

Of course.

Amanda 42:27

There's so much more we could talk about, but maybe it's a good spot to wrap up this conversation today with more to come in the future with you on the show. Um, talk about the after of treatment, both personally, professionally, whatever you feel is relevant to share in terms of being quote unquote done or finishing or whatever language we use about it. What do you want people to know about that?

Elizabeth 42:51

This is again, something I probably wish I had thought about more is to think about what the after looks like. I think a lot of times we spend so much effort thinking about what the active treatment phase looks like, and we don't spend enough time thinking about everything that happens after that. And I alluded to it earlier, but I think it was only as we got further along with those treatments, especially OIT and the volume, again, the volume of foods and the amount of what percentage of her calories in a day she was having to eat actually became such a burden to her. And really even though she might've been willing to do it, it was kind of an obstacle because she wasn't able to eat other things. 'cause she was so full from her doses. Luckily we had the flexibility to change a lot around how she was dosing and when she was dosing and what she was dosing with, so I think, I wish I had thought through that a little bit more. And a thing that goes along with that is, oIT was presented to me as this is how you do OIT. And what I have learned is every allergist who does OIT does OIT differently. I wish that I had understood that there can be a lot of flexibility in terms of all of those things I just kind of mentioned. If you are only one or two allergies, this is probably less relevant. But for multiple foods, I think thinking through that after phase, which could last who knows at this point, the rest of their life. We just don't know how long that will need to be. I think really understanding that and thinking through what does that look like and what does that look like at the age they are at. So if I had fast forwarded, okay, you know, as a 16-year-old, what does that look like? What does that look like as a 21-year-old, a 30-year-old? And then the flexibility of the dosing. I would want everybody, and this is for just in general, you know, I think we need as much compassion and grace for ourselves as possible. We're always trying to make the best decisions we can with the information we have. And then time moves on and a lot of times we get better information and we can look back and say, Ooh, I should have done that differently. Like, or, I wish I had done this or that. but we can never know that. And we can also never know what would've been if we'd made a different choice and we can make ourselves kind of crazy sometimes. I think thinking about that. I think trusting, trusting yourself and that you made the best choices you could. So when you get to that after phase, you know you did the best, whatever, however it turned out, and you never know how it's gonna turn out. I would say to anyone, be wary of anyone who gives you a guaranteed outcome of any of these treatments. You just don't know. We can talk about probabilities, but we can't talk about any individual case, what's gonna happen. It's not until you do it that you understand what's gonna happen. And so then being really kind and gentle and compassionate with yourself around whatever that looks like.

Amanda 45:44

That's so beautifully said. Thank you for that. That's the perfect ending thought. For those who aren't already following you, I know we, we laugh together because people don't know the difference between us. Our, our handles are the same on social media, so maybe you already know both of us because of the similarity, but please tell everybody where they can find you and about the resources that you've created for them if they want to either work with you or, or have some non-therapeutic but very valuable support too.

Elizabeth 46:13

Mm-hmm. Uh, yeah, you're right. Um, you're the food allergy psychologist. I am just at food allergy psychologists on Instagram, and I think at this point in time, my private practice is pretty full. I'm not taking on new clients, and, and that's been a real challenge to figure out how to try to meet the demand out there. And so I do offer groups. I offer groups for parents. I also offer groups for kids sometimes throughout the year. So you can find my website at www.drdrelizabeth.com.

Amanda 46:44

Yeah. Well thank you for all of the great work that you do and I love being colleagues and being connected. And so I look forward to so many more projects together. We've gotta have you back on and cover all the things. There's just too much for us to talk about.

Elizabeth 46:57

Thank you. Thank you for having me. And also, I guess I just wanna say, we talked about, food allergy parenting can be lonely and isolating. Being a food allergy psychologist can be lonely and isolating and finding you and becoming friends with you and having a colleague to consult with has been amazing and fantastic, and I'm so grateful for that. So, absolutely. I'm glad to be here and I love to keep doing things in the future.

Amanda 47:19

Me too. I think everybody can look forward to lots more to come from the two of us as a team.

Elizabeth 47:23

Awesome.

Speaker 2 47:24

We hope that this conversation brought a little more empathy and self-compassion to your treatment decisions and experiences, and helped you think of them not just as a medical decision or a treatment plan. Before you go, here are three things you can do to follow up on today's conversation. Number one, follow Dr. Hawkins. If you appreciate the way she brings both psychological expertise and a wealth of lived food allergy and celiac experience to her work, follow her @foodallergypsychologist on Instagram and check out all the great conversations she's having online. Number two, if you want more support, go to her website dr-elizabeth.com and find out all about the support she's creating and offering in the form of groups and online resources. And number three, if you're looking for support for food allergy treatments in the form of a book, you can look at my workbook From Fear to Freedom, which is available on Amazon. And I have to give Elizabeth a very special thank you here because she was incredibly generous and supportive with this project. She didn't just read it for me. She thoughtfully edited and proofread it and wrote a beautiful foreword. We are both working hard to help you all to feel supported and not alone like we were when we were in your shoes navigating these treatments. Thank you so much for being here, Elizabeth, and thank you for the work you do for food allergy families. I will talk to you again next week.

Amanda Whitehouse, PhD 48:46

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.