#82 When "Not Right Now" is Right For Now with Ina Chung

Every family approaches food allergy treatment differently, and that's exactly as it should be.

In this episode, psychologist and food allergy mom I sit down with Ina Chung, creator of @TheAsianAllergyMom to discuss one of the most overlooked aspects of treatment decisions: giving yourself permission to choose the path that aligns with your family's goals, values, and season of life.

Together we discuss:

•  Why more treatment options can sometimes create more pressure 
•  Raising confident, thoughtful children with food allergies 
•  Helping kids become part of the decision-making process 
•  The importance of knowing your family's goals before choosing a treatment 
•  Why "not right now" can be a thoughtful decision 
•  Building confidence instead of comparison 

You can follow Ina on Instagram @theasianallergymom
The Asian Allergy Mom

My new book, From Fear to Freedom: A Workbook for Navigating Allergy Immunotherapy is available here: https://a.co/d/051hmpku

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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Ina Chung 0:00

It's been hard because her older brother is autistic and a lot of our parenting has been about making sure he feels safe. We take a lot of time to make sure that he feels safe in our family and that she feels safe. So it's just, it's a lot. Our bandwidth as a family was very narrow. And so now we're just really thinking about how we can be more proactive for our daughter. It's just been just constantly evolving,

Speaker 0:25

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

Amanda Whitehouse, PhD 0:46

Welcome back to Don't Feed the Fear and our series on food allergy treatment decisions. You've probably noticed a common theme here and in your lives, which is that today's treatments offer us more options than ever, but they also can sometimes offer us more pressure and guilt about whatever it is we choose. Today's conversation is an important reminder that thoughtful decision-making isn't about the answer that you reach. It's about understanding your goals, your child, your family, and the season of life you're in. My amazing guest today is Inna Chung. She is the creator of The Asian Allergy Mom and author of A Kids Book About Food Allergies. Many of you already know her for her thoughtful and grounded approach to parenting children with food allergies and her remarkable ability to straddle seemingly opposite things like caution and confidence, advocacy and flexibility, all so that she can help her children develop their own voices along the way. I hope this conversation gives you permission to engage in and trust your own thoughtful decision-making and reminds you that there isn't one right path. Ina, thank you for being here.

Ina Chung 1:49

Thank you so much for having me. I'm really looking forward to our chat.

Amanda Whitehouse, PhD 1:52

You're a superstar parent in terms of how you approach things and handle them with your daughter. Would you tell everybody just a little bit about you and, and where you find yourself in, in terms of food allergy?

Ina Chung 2:03

Sure. So my name is Ina Chung and I'm on Instagram. I'm the Asian allergy mom and um, my daughter is allergic to peanuts, dairy, and egg. And, you know, it's been such an interesting journey with her because, you know, we found out about her allergies when she was really little. She was six months old. She had reactions to baked egg and baked milk when she was 1-year-old. It's been hard because we have, her older brother is autistic and a lot of our parenting has been about, you know, making sure he feels safe. We take a lot of time to make sure that he feels safe in our family and that she feels safe. So it's just, it's a lot. Uh, so our bandwidth as a family was very narrow. And so now we're just really thinking about, you know, how we can be more proactive for our daughter. It's just been just constantly evolving, I think is, is the way I would describe it. Uh, because these things, you know, they're not static. They're very dynamic. So it's been interesting.

Amanda Whitehouse, PhD 2:59

Right. We are as well as what's available and what's being offered and what the research about it is showing is constantly shifting.

Ina Chung 3:05

Yes, exactly.

Amanda Whitehouse, PhD 3:06

You have Such a positive parenting approach and such good communication. How did you learn so much?

Ina Chung 3:11

Well, I am a teacher by training. So I was a human development major in college and I got my master's in education for teaching ESL but still nothing prepared me for parenting, my son. And he is so interesting because he's very black and white thinking like he's a very black and white thinker, very literal in the way that he understands things and so. The way that I parented him, I think, really did prepare me to parent my daughter as well, because I had to be so careful with my words. For some like random things like the yellow light on a traffic light, it doesn't mean to slow down because sometimes we do speed up, you know what I mean? And so I had to think about like, okay, so what it means is that the red light is coming. And so I had to be so intentional about all the different kinds of words I used in the way I explained things, knowing that there could be repercussions later on if I talk about something with a fearful mindset. And that's gonna set my son up to think that something is fearful. But I had to kind of cover all my bases when I talk about anything. And so I feel like that really set the stage for helping my daughter understand that her allergies are not something to be feared, but something to be cautious about. And so I've tried to integrate that language all the time with her knowing that it's gonna set her up for the way that she's gonna see her allergies as well.

Amanda Whitehouse, PhD 4:37

Is that what led you into the book that you wrote?

Ina Chung 4:41

Yeah, so I wrote a book called A kid's book about food allergies, published with a Kids co. And I love these books because they are written exactly like social stories. I think it wasn't even intentional, uh, the way that, you know, the, the founder made his book as the prototype, you know, and so I, I wrote it because I haven't. Yet found a book that talks directly to kids about their food allergies, but also to kids who don't have food allergies so that they can understand, you know, their classmates and their friends and their siblings. And so I wrote this book to not only educate about what food allergies are, um, and just the daily life that we live and the different precautions that we have to take, but I also wrote it to help kids understand that. They deserve support from their community. That they can ask for help, they can advocate for themselves. So I really wanted to emphasize the message that they deserve safety and inclusion always. And that's like the centerpiece of the book, because I feel like kids need to hear that, that they're allowed to ask for help, to ask for accommodations, that parents are allowed to ask for those things. And so there's the education aspect, but then there's also the community aspect of the book that I really wanted, like a kid who doesn't have food allergies to kind of overhear this conversation that I'm having. With the kids who do have food allergies. You deserve this, you deserve that. And for the kids who don't have food allergies to be like, oh, that's interesting. So that's kind of where the book comes from.

Amanda Whitehouse, PhD 6:16

It sounds too like a great way, um, not just for kids with or without food allergies, but the in between like with your son to give him skills and, and feeling justified in advocating for and protecting his sister, I imagine too.

Ina Chung 6:27

Yes, absolutely. And he, he is the best advocate for her. So his black and white thinking, I think it really helps him to really feel confident in what he needs to ask for, for her on her behalf. And he knows, we check labels every time. He knows that whenever she's offered a food that it has to be safe. And so even when she was very little and he was very little, like he was an early reader. So when he was four he was like helping me read labels and he was stopping people from like giving my daughter food and things like that. So yeah, the book is definitely for kids like him who might need some extra permission to advocate for their siblings for sure.

Amanda Whitehouse, PhD 7:06

Great. Well, we'll make sure that we put a link to the book in the show notes so that people can find it. We are for the most part today in this conversation two allergy moms. And we just wanted to get together and talk through, um, what I know a lot of my listeners. Um, and a lot of people in the allergy community are going through, which is we are so lucky to have all these new treatments and more doctors offering them, and it's a big decision, and thinking through it is tough. So I'm happy to offer my perspective on what our experiences are, but those were our experiences only. I'm not giving anyone medical advice, and I know that you're not either.

Ina Chung 7:40

Thank you for saying that.

Amanda Whitehouse, PhD 7:40

Of course. Why don't you start and just give us a snapshot of where you're at now in terms of considering whether to do some treatments and what are the, all the thoughts swirling through yours and everyone in the family's heads.

Ina Chung 7:53

Absolutely. We are living our full lives. My, we are eating at restaurants and able to go to social activities and of course, with precautions and substitutes and backups and all those things. But I feel like our daughter is living a great life and she's a happy kid not having mysterious reactions all over the place. Uh, I feel like the allergies are very well managed right now. And for a long time, we didn't even have the ability to consider treatments because we didn't really have time. And now like starting from when my daughter was six, she started to really express how sad she was that she couldn't have what her friends were having up until then. She didn't really tell us that it was hard for her. And so I started to kind of plant the, I plant the seed saying like, you know, there are treatments that might help you to be able to eat these foods someday. Or maybe you could outgrow them. We don't know what's going to happen, but I know that. You know, we'll be okay. Like we'll support you in whatever, whatever ends up happening. And when she asked about the treatments, I explained to her, for example, like what OIT was. And she was like, no, I don't wanna do that. I don't wanna have to eat milk or, or drink milk or eat eggs for treatment or anything like that. She was completely against it. So I dropped it. We do have allergens in the home and we have our son eat, you know, the Chick-fil-A, regular nuggets or things like that, and she's very happy with her grilled nuggets. And so one day she said, I wish I could have some of my brother's nuggets. And I was like, I know, I know. They look good. It had been a while since we mentioned treatment, so I said, Hey, do you remember we talked about how there's a treatment where maybe you would be able to eat those someday? And she was like, oh, yeah, what is that about? And so I, I explained it once again. I. And she was like, I, I don't know. I don't know. And she was very undecided. Again, I dropped it and then, uh, we were watching a kid's show miraculous. There's a show that takes place in Paris and they're eating macarons and stuff. And my daughter's like, I really wish we could go to Paris someday. And I said, I would, we would love to take you someday, but just so you know, like there's a lot of foods with like dairy in France. And she said, but what if I do that treatment? What if I do OIT? And I said, well, yeah, if you do that, then it makes it more likely that you could eat more foods if we ever visit paris. I was very, very careful not to say like, if you do OIT, then you can

Amanda Whitehouse, PhD 10:37

right

Ina Chung 10:37

eat the dairy, you know? So I, I really had to use my words very carefully.

Amanda Whitehouse, PhD 10:42

And is that one of those you learned from your son? Like, I can't say this because he'll hold me to it.

Ina Chung 10:46

Exactly.

Amanda Whitehouse, PhD 10:47

Okay.

Ina Chung 10:48

Exactly, exactly. And something about the whole Paris idea, um, changed something in her and she said, I wanna do it. I wanna do it. I said, okay, well let's me make sure you know what this is. So I explained it once again, that she would be eating like teeny tiny bits of her allergen safely with a allergist direction and all that. And she said, yep, I'm gonna do it. Like, send a message to our allergist right now. And so I said, okay, I'll, I'll do that. And so I did. And our consult is scheduled for June. And uh, in the meantime, I am prepared for her to change her mind because it's a whole different framework of understanding her allergies and it's such a different thing that we'd be doing that she has never done before. And so I'm kind of going into the consult knowing that. It may not be what she wants in the end, or she may start it and then not wanna do it after a while. Who knows? So I'm definitely keeping an open mind and I know that there's a lot that I probably don't know, and a lot that I can't answer for her either. And a lot of questions that she's gonna have as we learn more about it. So, yeah, I'm just, you know, I tell both my kids all the time, let's have an open mind because we just don't know. Uh, so that's kind of where we are at right now.

Amanda Whitehouse, PhD 12:11

This is an example of what I love about your approach with the kids, but that idea of planting the seeds along the way and giving her agency over the decision, not just saying, we made this appointment even with the best and most positive of intentions we found this thing the doctor can do. It'll be great. You might be able to eat your allergens and be safer, but to give children agency and choice in the decision. You gave her that time. You, you said it. Yes. And the first reaction was just a hard no. A lot of parents would find that, understandably, very deflating. Oh my gosh, I was so excited about this great idea. So I love that gentleness and that, um, power that you give your kids in the way that you approach things with them.

Ina Chung 12:49

Yeah. Thank you so much. You know, if she was a lot younger, I think it wouldn't be easier. Right. I'm sure. It's hard to see a way forward without her buy-in, eating her allergens. I, I wanted to make that, um, a primary thing for our family. Like with food challenges and things like that, you know, she, she needs to to be committed to it and to understand what it's about, what the risks are, what the benefits could be so that she can participate. And I don't have to force her. Like I don't, I don't wanna do that with her for something that is optional too, I wanna mention.

Amanda Whitehouse, PhD 13:24

Right.

Ina Chung 13:24

Because, um, I think that's something that helps me, is that I accepted a long time ago that her allergies might be lifelong.

Amanda Whitehouse, PhD 13:33

Mm-hmm.

Ina Chung 13:34

And I think that that's a really hard place for a lot of parents to come to, especially with so much talk about like, you know, this many percent of kids outgrow this allergy by this age, and they're just holding onto hope, which I totally understand. And of course I have hope too, but at the same time, I think that accepting that my daughter's allergies could be lifelong has helped me a lot with kind of letting go of the possibility of treatments. You know, the fact that she may wanna drop out the fact that she may not wanna do it at all ever. And so knowing that we'll be okay, even if she has allergies for her entire life, kind of releases me from any pressure on myself or any pressure that I give to her.

Amanda Whitehouse, PhD 14:22

I can relate to that so much. And there's so much peace in that, that I think a lot of younger parents or earlier in the journey would think, well that sounds horrible. You have to have hope. And it really is a different shift for us that

Ina Chung 14:33

it is. And I wanna know for you, how did you get to that point where you could accept that it might be lifelong?

Amanda Whitehouse, PhD 14:39

Yeah, we really did run the gamut of treatments and some people think like that was too much. Maybe you dragged your son through too much. But I have no regrets in terms of anything I can offer to you. I'm so privileged to be able to do it and we've done it. Some of it worked better than others. As he got older we had to factor in his decision more and more. And so I think all of that combination of things plus having overall a very positive experience with it and being so thankful to have the protection that we have now, even though he's still obviously allergic. Um, I think that just lets me have no regrets. It lets me not look back and think about the what ifs anymore.

Ina Chung 15:17

Right, right. I love that. Yeah.

Amanda Whitehouse, PhD 15:20

But it's a process, and it's, you know, my big thing is letting ourselves, feel the emotions, right? I had to go through all those stages of the emotional process of that. And that I think is really important for people to be aware of as they're considering or moving into, or going through a treatment like OIT or any of the other, treatments, you said you are very open and accepting, but if you're not and you're just determined, we're gonna beat this and we're gonna outgrow it, and this is gonna be gone. That might make the process more frustrating and difficult for people.

Ina Chung 15:50

Yes, absolutely. Even now, I'm, I'm trying to set the stage to help my daughter understand. We don't really know, even if it goes well, we don't really know what the outcome will be. I'm trying to explain to her the wide range of possibilities of what the outcome could be. As a parent, I have found that when I set my expectations low. That kind of helps everybody. Um, not that I'm, you know, really defeatist or a pessimist or anything, but, I, I don't wanna disappoint my kids when something that I say does not come to fruition. And so I try to explain the, you know, the wide range of possibilities. And there's just, there's a lot of information out there that I have yet to sift through about how people get to different points in maintenance and things like that. One, one interesting thing that, um. That came up as I messaged our allergist about the possibility of OIT.

Amanda Whitehouse, PhD 16:43

Mm-hmm.

Ina Chung 16:44

He, I remember he wrote specifically in his message back to me, um, Xolair will definitely be discussed. And I said, oh, that's

Amanda Whitehouse, PhD 16:52

very interesting

Ina Chung 16:53

because the, my history with Xolair. So I think it's a wonderful, wonderful thing that can help so many families. When my daughter was one, we were offered the chance to be in that OUTMATCH trial. When I learned about it, at first I was like, of course I wanna do it. And then I learned that the first steps of the trial was that they had to do food challenges to establish the allergy. Yes. And that pained me so much. And I said, we, I can't do that to my daughter at this time. You know, we respectfully declined and then we were offered another trial where they're looking at the effects of Xolair on eczema or something like that, or skin conditions. And I was like, oh, free Xolair for a year. That would be interesting. But then like we don't need it right now. Right. You know, we don't need to protect my daughter from accidental exposure because we haven't had, this hasn't been an issue for her. So that, that's kind of my background with Xolair, like, no, no, thank you. Not necessary for us. Right. And then now our allergist is saying, like, I, I think he's very excited about Xolair and OIT together. And so I've been consuming a lot of, you know, information like articles and podcasts about the, the pair. There's a lot of nuance to it as well. And so I am preparing for that conversation the best that I can. And I'm just thinking from my daughter's perspective, like, you know, needles, right? Doesn't like needles. I want to set her up for success with whatever treatment we end up with. And I am concerned that if allergist is pushing Xolair that it might make her not wanna do anything at all. And so I am gonna tread this line very carefully because, you know, I, I understand that there could be some really big benefits of pairing the two together, but if she's not gonna do any of it at all, then there's no benefit, right? And so I have to kind of weight my daughters, how she feels about an injection that can make this treatment more effective or safer or whatever. Um. So it's, that's kind of also kind of the wrench that was thrown into my whole plan. Right. That is, has been really interesting. So our allergist is wonderful and he's been so great, but still I'm preparing for him to really push it and I'm gonna have to be very sturdy in, you know, balancing what my daughter can handle or wants to do or what she's willing to do and, you know, going with what our allergist is very strongly recommending. So I'm, I'm just mentally preparing myself for that, not battle, but that like pushback, like that back and forth. So I'm, I'm getting ready for that.

Amanda Whitehouse, PhD 19:44

I, and I've heard you talk about that also very beautifully, just in terms of what your nature is like and then the positions we get put into as parents. Yes. So could you say what you're imagining that looking like or how you do that in this circumstance? As a parent, it's tough.

Ina Chung 19:57

Yes. So I am a giant people pleaser, especially when it comes to like authority figures. Like I wanna do whatever they tell me to do. And when it comes to my own healthcare, like I'll just, I'll do whatever that you tell me to do, even if it's hard. I respect your, you know, authority on the topic and everything. When it comes to my kids, it's so different because I can't just say yes on their behalf a hundred percent of the time. And you know, there's that weird push and pull where the medical professional is the medical professional, and that I don't have that expertise, but I know my kid. And so that balance of kind of understanding what does the research show and what does my kid need, you know, so I'm an expert on my kid, but I'm not an expert in the medicine. And so I have to balance those two things. And so I have learned that my people pleasing doesn't help me in these situations, and that I really need to go in with this like sturdiness and like mantras and all these things that I can rely on in the moment when I feel, when I feel or when I perceive pressure. And even if the doctor is not actually pressuring me, I perceive that pressure so easily. So just being aware of how I can have tunnel vision and feel like these compulsions to say yes and agree to that when I feel pressure like that, that helps me even just knowing that I have that tendency. Um, so yeah, preparing in advance for that conversation I think is really big for me because I know that it, it might be hard to push against what the research is showing, what our allergist wants to do, who I love and trust. So yeah, that's, it's a big thing for me. It's gonna be tough.

Amanda Whitehouse, PhD 21:45

Well, you make a good point. I feel like I know enough about you to know you wouldn't be staying with an allergist that who you really felt was pressuring you and was not incorporating your feedback into the treatment. Right, so to acknowledge not only, like you said, I have this pattern, calling it out and giving it a name and words, takes some of its power away. And then just to remind yourself, like you said. My experience with the doctor is this, so I hope it takes some of that edge off of it as you get gear up for that decision because it does sound like they're supportive. One of the other things you made me think of in terms of this medical expertise and this body of knowledge and research that we have. Mm-hmm. But boiling that down to apply to my individual child, it's not just my child, it's the family. And you mentioned, you know, you've got quite a lot going on in your family. Your bandwidth has been stretched probably past its max, so I'm curious about you coming onto this decision in terms of the timing of your kids' needs and your family and how you think you'll make it work, or if that's a concern.

Ina Chung 22:45

Yeah, actually it, it really is. And so my husband just took a job this past couple of months ago where he is working so much more than he was before. And even before that he was working a lot. And, uh, so yeah, during the week it's, it's just me. And it's been, it's, it's hard. And so I know that, you know, with up dosing appointments and maintenance and things like that, it's, it's just a lot to keep track of. And, um, and so I, I am concerned about the, the resources, like my own mental and emotional and time resources that I have, um, to make this work if we're going to do it. Um, I, I, I haven't come to really. Feel confident about anything right now. And so yeah, this whole consult that we're going into, I, um, yeah. Open mind, right? Like, I just don't know what I'm gonna be capable of, what my daughter, even my son is gonna be capable of. Like, he gets really scared when my daughter has reactions and, um. You know, I think it's gonna be hard even for him to see my daughter consuming her allergens. You know, and there's that whole aspect too. And, you know, if she has a reaction like, what am I, like, where am I going? Who am I gonna rely on? And so there's, there's a lot, there's a lot of, uh, balls in the air, I think. And uh, but I do feel that more than any other time in our family's life, like now is the time when, um, I would be able to manage this. Having gone through anaphylaxis with my daughter, I came out of that just feeling more confident and being able to, you know, manage that if it ever happened, happens again. I feel as prepared as I can be, I think, and I'm looking forward to learning more so that I can be even more prepared

Amanda Whitehouse, PhD 24:40

So you had mentioned not knowing what's going through her head, but I know you're talking to her about it. What is she saying so far?

Ina Chung 24:47

One thing that I kind of teased out later on in one of our like second or third conversations was that I think she thought she had to drink straight milk. Like just a ton of milk,

Amanda Whitehouse, PhD 24:59

right? All at once for time.

Ina Chung 25:00

Yes. And I realized, oh my goodness, I can't believe I left out that very important detail. And so that explained her hard "no," at the beginning, because she didn't really understand what I had in my mind that I wasn't expressing with the exact. Words that I should have been using. Right. So that's one misconception that I was happy to address. I, and so for her, I think what's going on in her mind now that she knows that is that there's a possibility, you know, that she can eat what she, what her brother's eating. Um, and for a while she thought like the goal of OIT was to drink milk. Not only was the dose just straight milk, but the goal was to drink milk.

Amanda Whitehouse, PhD 25:44

Right.

Ina Chung 25:44

And so something that I've been kind of sprinkling in our conversations before that whole Paris talk was like, that has milk in it, and that has milk in it. If we did OIT, maybe you could eat that too. She knows these things 'cause she knows that these are things to avoid, but I think framing it in a different way, like this is something to avoid versus, Hey, if you do this treatment, maybe you could finally eat this thing. Like that was the switch I think that she needed to understand it differently and I didn't realize that. Um. To me, it's the same thing, right? We avoid this because of your allergy. If you can eat this, then if you can tolerate the allergen, then you can eat that,

Amanda Whitehouse, PhD 26:32

right?

Ina Chung 26:32

But she wasn't coming with me on that journey until I said it explicitly, and in many different circumstances. I was like, oh. Wow, that is very interesting how kids' minds work.

Amanda Whitehouse, PhD 26:45

What other thoughts or aspects of OIT or treatment in general have been on your mind?

Ina Chung 26:51

I think that our conversation with the allergist will be interesting because my daughter, in her mind, her goal is to eat these nuggets, you know, and to go to Paris, eat croissants and things like that. If our allergist says like, that's not very likely, he could say that and that might be the case. And if that's true, we wanna know. And then I can go back, we can talk to our daughter and say like, Hey, if you do OIT, we're probably not gonna get to that goal that you have in mind. And this is a more, more realistic goal. Maybe just like, you know, protection from accidental exposure. Um, do you still wanna do it? You know, and I, that, that's a whole different conversation, right? Because it's a lot of work for a smaller goal that it actually isn't really that hard for us right now. Avoidance has been working great for us, and so that is gonna frame the conversation a lot in the decision, so I'm really interested to see what happens.

Amanda Whitehouse, PhD 27:48

Yeah. I'm interested too. Will you come back when we know more and can we talk about it again and when you experience?

Ina Chung 27:53

Oh, absolutely. Yes, for sure.

Amanda Whitehouse, PhD 27:57

Ina, thank you for coming back to give us the update. I'm so glad to have you share now with us how it went and where your decision-making process took you

Ina Chung 28:05

Yeah. Thank you so much for having me back. I'm really excited to share how it all turned out

Amanda Whitehouse, PhD 28:11

So where do you want to start? I mean, we left off where you were waiting for your appointment. Um, was there any more kind of back and forth or problem-solving before you got there? It sounded like your daughter was on board at that point in time with what you knew.

Ina Chung 28:24

Right. She was pretty committed to doing it. She had no qualms. I did mention to her that the doctor was going to, uh, bring up the idea of Xolair, and so I explained that to her. I wanted her to be prepared for that conversation knowing that she could say no to that because I felt like if, know, she was kinda getting the sense that that was the only way to do it, that it would kinda turn her off from the beginning. So I kind of like pre-approved her, um, just rejecting that option if she wanted to. And so I think that that was, um, helpful.

Amanda Whitehouse, PhD 29:00

I love that. Like, giving your child a permission slip in advance to say no to a certain aspect of something is so powerful for them

Ina Chung 29:07

And I thought that because, you know, kids can have such a visceral reaction to injections and the idea of injections, I just, I could imagine her just kind of shutting down if that came up by surprise for her. And so I didn't want anything to be a surprise, even though we actually ended up being surprised at the appointment, um, which we can get into. So, um, we got to the appointment. We usually see one allergist, but then when we mentioned the OIT consult, our allergist referred us to someone who is more involved in the OIT process at our clinic. So we talked to her, and kind of started out by saying, "We don't do OIT for egg or dairy." And those were the two allergens that we were looking into. Um, she's also allergic to peanut, and they do OIT for peanut, but, like, peanut has not been a difficult one for us to manage. And I don't want to dismiss the families for whom peanut allergy is very difficult, like not saying that at all. But for our family, um, especially compared to dairy and egg, it's been not too bad. And so that's kind of how things began. And I, my jaw was on the floor. My daughter was l-... Like I told my daughter to, to listen and participate in this conversation, so I had her put the iPad away. And she was looking at me like, "Um, what are we doing here?"

Amanda Whitehouse, PhD 30:29

Hmm

Ina Chung 30:30

Um, and so after we kind of got through that whole talk about how they are not doing egg and dairy OIT, then she started to talk about the whole Xolair option, which she had kind of prepared me for a little bit. Um, but it wasn't plus OIT, which is what I was expecting actually, because I had, you know, I'd listened to other many podcasts and articles about that whole topic, and I was ready to talk about it. But another curveball, she said that if we went the Xolair route, that what we would do... And again, this is just, would be just for us and, you know, not medical advice for anybody else. But what their plan would be for my daughter would be to be on Xolair for, I think, six months, and then just go through challenges. Um, so a baked egg, baked dairy challenge, staying longer on Xolair, and then doing another challenge, And so, um, you know, that was kind of the proposed plan. so we were given all the information. Like, we talked for, I don't know, maybe an hour just about these two options, and I had like a million questions.

Amanda Whitehouse, PhD 31:44

Mm-hmm.

Ina Chung 31:45

so in the end, um, I kinda turned to my daughter and I asked if she has any questions and kinda summarized everything for her because it was kind of a lot. um, the allergist also turned to my daughter, and I love that she did this. She was like-- She said to my daughter like, "Do you have any questions? Is there anything that you don't understand?" my daughter said, "No." But I mean, like it was, it was a lot, so it could just be that it was just too much for her to really comprehend and process. Um, and so I kind of, uh, scaffolded it for her a little bit and I was like, "Okay. So egg and dairy OIT, we were expecting to be able to do that, but that's not an option." She was like, "Okay." Uh, and so I kinda summarized the whole Xolair option she was like, "I don't wanna do shots. I don't want a shot." And I was like, "Okay." And then the allergist asked, "Well, what about peanut? Like we do OIT for peanut, and that's one of your allergens." And sh- at first she said yes, and I was-- I c- I couldn't help my res- my response. I was like, "Really?" Uh, because she never talks about wanting to eat peanut products, and so I didn't think that peanut OIT would be something she wanted to pursue 'cause it doesn't seem to affect her life very much. And so maybe it was a leading question now that I think about it. But I, I asked her, I was like, "Hey, so if we do peanut OIT, then this is what it would look like and you would be able to eat more peanut stuff. What peanut stuff would you wanna eat?" And she, she thought about it and she was like, "There's no peanut stuff I wanna eat." Um, and so I was like, "Okay." Uh, so, you know, the allergist and I are kind of both kind of getting the sense of where we're going. And the allergist said, like, you know, "Do you think that it would be worth the time and the effort to do peanut OIT to, to, you know, eat some peanut stuff?" And she was like, not really." And then so that's kind of where we left the whole OIT and Xolair conversation. And one thing that was interesting was the allergist said towards the end that, you know, "This is the way our clinic does things, and other clinics do things differently. if you decide..." And she was being very, like, vague. Um, she said, "If you decide to go to a different clinic where they do offer, you know, more of the treatments that you're looking for, like, you will still be our patient, and we will still care for your daughter. And there's, like, no hard feelings at all." Um, and so-- And she was like, "Yeah, there's a lot of, you know, clinics in the area that you can look into." And so I turned to my daughter, and I was like, "Do you wanna try to find somewhere else that might do egg or dairy OIT?" And she was done. She was tired and, like, it had been a long discussion, and she was like, "No, no, I'm done. I don't wanna think about it anymore." And so I kinda, you know, took the hint from her that I think she's kind of done processing and listening and, and things like that. And so we left it there basically. Um, and of course, the allergist said, you know, "The door's always open. You can change your mind. we can look into other therapies that are in the pipeline. There's so much happening in the world of allergies. So, like, don't lose hope. Um, let's continue talking, continue talking to your daughter." I was like, "Yeah, that's great." and so that was very much in line with my whole attitude going into it to begin with. Like, no pressure, you know. Whatever we don't decide now, we can decide later. So we came home, and I told my husband about the whole appointment, and he was kind of, um, in favor of looking into other clinics. And so we k-kinda gave the talk a rest, and then a few days later, we mentioned it to my daughter and asked if she wanted to go to a different clinic now that we, you know, had processed it, things like that. And she still said no. Like, "It's okay having my allergy," she said. so that's, that's where we left it. And for me, I feel at peace because we explored it, you know. And we could go further and put more effort into finding another clinic, trying to convince my daughter. but for now, I, I feel good about where we're at. I feel like we put in all the effort we could in the moment and learned as much as we could. for me, I would say the conversation is never really over. I'm not gonna pressure her. Things are gonna change as she gets older. Social relationships will change. The social settings that she's in will, will be different, and her needs might change, how she weighs things might change, too. So, um, I let her know that it's just always open, and we can always talk about it.

Amanda Whitehouse, PhD 36:42

Aw. Thank you for sharing that. I love your example and the doctor's example of such a child-friendly and involved and positive experience because there are many people out there who operate that way, but sometimes, sometimes not. And sometimes the kids, for whatever reason, it's not a developmentally appropriate conversation, or they're not included in the decision or, or the adults have a decision made up, you know, separate from what the child wants. And I love this example of how it really was a collaborative, shared decision-making with an open end to it, depending on what's coming in the future.

Ina Chung 37:15

Right. And one thing that I noticed about this allergist is that, um, at the beginning of the appointment, we talked about all of her, you know, past reactions over the year, and I mentioned this one situation where there was, like, peanut butter at this activity, and I was describing my experience of it and I love that the allergist turned to my daughter and said, did you feel about that? Were you nervous, or how did you f- make the decision to stay in that activity?" And, and I was like, oh, my gosh. The transition from being the person who talks at the appointment, I realized, like, oh, I need to say less over time even though my daughter isn't making decisions independently, obviously. I think this just reminded me, this is something that we need to transition towards, making sure that my daughter has a voice at these appointments. And throughout the appointment, she just continued to include my daughter and ask questions, and, um, so I thought that was wonderful, and it was a really great reminder for me also.

Amanda Whitehouse, PhD 38:15

I love that. You're right. We do have to adjust over time

Ina Chung 38:18

Yeah

Amanda Whitehouse, PhD 38:18

and center our child's voice more and more in the conversation.

Ina Chung 38:21

Mm-hmm.

Amanda Whitehouse, PhD 38:22

but I'm sure you've been doing that all along.

Ina Chung 38:24

I hope so.

Amanda Whitehouse, PhD 38:26

You can only know what you know now, but for people listening, is there anything that would have been helpful, that you would have done differently knowing what you know now that other people might want to have on their radar or, or to remind themselves of?

Ina Chung 38:38

Oh, interesting. So I feel like the conversation about Xolair is just everywhere. think that there's so much about Xolair to learn that I think it's hard to really capture all the nuances of what Xolair can bring, um, in a short appointment, especially you have like a squirrely toddler kind of thing. So I, I'm really glad that I was able to take some time before the appointment to really learn as much as I could about Xolair, about how allergists think of it, how other parents think of it, hearing stories of people. Um, and there's been some really amazing stories and really disappointing stories, and I think it's important for us to get kind of that full range, um, of how it can be used and, um, just the history of Xolair because it's been around for a long time, and I think a lot of people don't know that. So I think that, um, for most people going into any appointment, I think it's really smart to learn about Xolair.

Amanda Whitehouse, PhD 39:41

I agree. Another t- thing that I like to add, you know, I often suggest, and you handled it beautifully, and I think you know your daughter's limits. Um, but I always suggest if it's possible to have another trusted adult, even if there's not another parent available, to go to appointments with you, because then if the child has lost interest or if, like you said, if your child shuts down at the mention of Xolair but you still have questions, they can head out to the waiting room.

Ina Chung 40:04

I think that's a really smart idea for those people who can manage it because, yeah, she was kind of done with the conversation forty-five minutes in. With someone with a toddler or a baby, how much harder would it be to have a measured, conversation where you can gather your thoughts and really absorb the information that you're getting? So I, I totally agree. I think that for those for whom it's possible, it's definitely a good idea.

Amanda Whitehouse, PhD 40:27

Yeah. What else would you say just in terms of any kind of emotional process? It doesn't sound like she's too distraught about the decision. Have you had any kind of process you're working through or just with that idea of maybe we're gonna do a treatment? No, not right now

Ina Chung 40:42

Yeah. So I, I will be honest, I was pretty disappointed. I try really hard not to pin, you know, all my hopes for a normal life and treatment or outgrowing the allergy or whatever. But the more I thought about OIT, the more hopeful I became. I see so many stories of people being able to do so many different things and eat so many more different foods after OIT. That hope was building, despite my trying to be measured about it. And so after hearing that egg or dairy OIT is not gonna be possible with our allergist who we love, knowing that my daughter's likely not going to go out of her way, I guess I can say it that way, to pursue this kind of treatment,

Amanda Whitehouse, PhD 41:24

Mm-hmm.

Ina Chung 41:24

Um, the ideas I had are, you know, kind of dashed for now. It wasn't really upsetting, but just kind of... I

Amanda Whitehouse, PhD 41:34

took

Ina Chung 41:34

some time to process and deal, with kind of reshaping those expectations that I had once again. Um, just kind of grounding myself in the thought that we've been doing this for seven years and we are doing great and we're keeping our daughter safe. There are some missteps along the way, but we've learned so much and my daughter's learned so much and we have a supportive community. So we're just gonna keep doing what we're doing and it's gonna be great. So I, yeah, I did take some time to kind of reground myself in that.

Amanda Whitehouse, PhD 42:11

Yeah. It's really helpful for you to share, so thank you for coming here I think there's pressure all around from all of these new options. I think as parents, we feel a lot of shoulds. We feel a lot of weight. We feel so much guilt, you know. And so I, I hope this will be helpful for people to hear as a reminder that saying no to the treatments and that we're doing well is a, is an absolutely valid option. And I don't ever like to say the best or the right thing for you because it might change in time, right? But it is absolutely just as valid of an option as the others. And, and I want to remind people that even though we're talking so much about great things, it's a great thing too that your daughter was presented with all of that and said to you... How did she say it? "It's okay. My allergies are okay"?

Ina Chung 42:54

Yeah. She said my, my-- it's okay having my allergy.

Amanda Whitehouse, PhD 42:57

It's, it is okay having your allergies, right? Aw, what a sweetheart. She sounds so wonderful

Ina Chung 43:03

is great. She is great. And I think that, you know, taking her no, I, I kind of see it as taking it as a no for now. Like, this is where we are right now, and yeah, things are gonna change, and we'll just keep discussing it, keeping the door open, never applying pressure, but just gathering information, learning, and discussing as a family.

Amanda Whitehouse, PhD 43:27

I think that's amazing. Thank you for sharing it with all of us to hear you work through it so we can learn from that.

Ina Chung 43:32

Yeah. Thank you for the opportunity to share

Amanda Whitehouse, PhD 43:34

And if things change in the future, we'll come back and we'll talk about it again.

Ina Chung 43:38

Absolutely. Absolutely. Sounds great.

Amanda Whitehouse, PhD 43:40

Well, I am going to put links in the notes for everybody to follow up on everything we talked about. And will you say one more time what your Instagram handle is?

Ina Chung 43:48

Yes, it's the Asian allergy mom.

Amanda Whitehouse, PhD 43:51

So I'm sure people will look forward to seeing more if they don't already follow you on there

Ina Chung 43:55

sounds great. Thank you so much. Really appreciate your time.

Amanda Whitehouse, PhD 43:58

I'm so happy you came. Thank you. Thank

Ina Chung 44:00

you.

Speaker 4 44:02

Before we wrap up, here are three action steps I think that you'll find helpful after today's conversation. First, if you aren't already, follow Ina on Instagram @theasianallergymom She fosters such great conversations within our community, and you'll find her to be a really helpful resource about many topics. Second, if you'd like to hear more from Ina, I encourage you to listen to her appearance on the FAACT Roundtable podcast. It was episode 212, and in that conversation, she shares even more about her approach to food allergy parenting, advocacy, and raising resilient kids. And finally, Ina also contributed her experience and the decision-making process that we talked about today in my new workbook, which focuses on the emotional and psychological aspects of making these food allergy decisions. Her perspective adds a really important voice to the conversations that we've been having throughout the series and in the book, which you can find on Amazon and on bookshop.org. It's called From Fear to Freedom: A Workbook for Navigating Allergy Immunotherapy. As always, thank you for spending your time with us and until next time, keep learning, keep asking questions, and don't feed the fear

Speaker 2 45:10

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.