Don't Feed the Fear
Welcome to "Don't Feed the Fear," where licensed psychologist Dr. Amanda Whitehouse offers expert guidance on managing the social and emotional challenges of food allergies and related conditions. Tune in for compassionate advice, practical strategies, and inspiring stories to help you navigate anxiety and trauma with confidence and resilience.
For more info on resources from Dr. Whitehouse, go to www.DrAmandaWhitehouse.com
Theme song: The Doghouse by Kyle Dine, www.kyledine.com
Used with permission from the artist
Don't Feed the Fear
The Aftermath of Anaphylaxis with Kelly Chambers
Food Allergy Bravery Clinic | Children's Hospital of Philadelphia (chop.edu)
What is Avoidant Restrictive Food Intake Disorder (ARFID)?:
Avoidant Restrictive Food Intake Disorder - NEDA (nationaleatingdisorders.org)
Three things:
1. After Anaphylaxis resource: Cards (mountsinai.org)
2. Tell your story to a safe, trusted person, all the way through to the point of conclusion and return to safety
3. Epi Experts group starting 8/21/24: www.DrAmandaWhitehouse.com/epi-experts-group
Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme. www.kyledine.com
You can find Dr. Whitehouse at www.DrAmandaWhitehouse.com
or on Facebook (Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist)
It scared me how severe the reaction was considering she never even actually swallowed something. but about two weeks later, she just decided she wasn't eating so she started essentially starving herself and the only food she would eat was cherries. For about two weeks, that's all she would eat. She started losing significant weight, obviously very quickly. So 20 percent of her body weight. We would beg and bribe and. Do everything we could, but there was no changing her mind and her allergist explained it as though her mind knows she had a near death experience. So if I don't eat, then that won't happen
Speaker 2: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.
Kelly Chambers is our guest today on the show. She's a mom of three girls, Eleanor, Charlotte, and grace. She lives with her family in Pennsylvania and works in marketing for us fertility. And for the past seven years, she's been deeply involved in managing her daughter Ellie's food allergies, which includes Sesame tree, nuts and beans. Last summer, Ellie faced a severe anaphylactic episode that led to significant food restrictions and weight loss. And a year later, Ali and her family have made tremendous progress. They're now in a much better place with lots of growth and recovery happening. And so Kelly has been generous enough to share her time with us so that we can all learn from their experiences. Kelly. Thank you for being here. I know you are very busy trying to keep up with work and those three girls.
kelly-guest500_1_07-11-2024_143703:Yes. Um, that's the. The easiest part of my day is when I'm working. It's the real work happens, you know, at four o'clock.
squadcaster-2e07_2_07-11-2024_143644:Yes, and, and all the time while you're working, it's always running background programs, right? Always thinking and planning about what needs to be done and what's coming up,
kelly-guest500_1_07-11-2024_143703:Yes. And always, especially as an allergy mom, always having my phone within reach, just making sure that everything is status quo and there's no emergencies that I need to be pulled into.
squadcaster-2e07_2_07-11-2024_143644:Mm hmm. Yeah, it's a lot to carry and a lot of things to juggle. The reason I had you on the podcast is because we were talking about anxiety and how it develops in the body. And I did this big description right of, of how anxiety is created physiologically. what are the the things that happen that create this anxiety and trauma in our bodies. So the reason that I was so glad you were willing to share is because I think it's helpful to take that information and talk through it in a real life example of someone who's been through one of those tough experiences. And now you have some perspective to look back on it and say, Whoa, here's what happened. We can see it now. Here's how we're moving through it. But to really talk about, specifically how that happened after the bad experience that. Do you mind starting with
kelly-guest500_1_07-11-2024_143703:I'm happy to. So, again, mom of three, Eleanor is my oldest by 30 minutes. She is actually a twin. And I also find it very interesting that, her twin has no allergies at all. Ellie has so many, even though they had the same utero experience and breast milk, Ellie is the one that drew the short straw in terms of all of the food stuff. So, Eleanor has been allergic to sesame and beans and tree nuts since gosh, since she was like six months old. As soon as we started introducing food, she was having reactions to them. she's seven years old now. last summer we went to a music festival at our local park in our little town and we walked home and got ice cream, on the walk, my, or at the ice cream shop, my husband got a couple of assorted chocolates for himself and we were walking home and he, she asked for one and we gave her one and it was a safe one for her. It was like a non parallel. And we continued on with our evening and we got home and he put, like, his little box of chocolates on the counter. Eleanor has always been really good about her allergy. She never takes anything without asking. And because she had that one piece of chocolate on the walk home, she just assumed they were all safe. she thought they were all the same chocolate. So she grabbed one as she walked by and popped it into her mouth. So as soon as she did it, she knew that she'd bit into it and realize there's some, this is not what I had prior. And she spit it out. But that, started the allergic reaction and it happened pretty quickly. My best friend was actually at our house and she's a nurse anesthetist. So it was a best case scenario in terms of having someone that, is familiar with airway issues. But, she drove the car while I sat in the back and we administered epinephrine and we got her to the emergency room. It was scary because she was wheezing and her throat felt like it was closing. She said the kind of like an octopus was wrapped around her throat. Which was an interesting like description. But she was also having hives and itching and eyes swelling, shut tongue swelling. we did epinephrine, Benadryl, I think even Zyrtec. And then we spent the night in the emergency room. Her symptoms immediately started getting better and she was in pretty good spirits. She ended up going to school. I think we might've taken a day off, but she went back to school. No big deal. So that was kind of the end of it. And we learned a lot as a family that day in terms of she learned a lot. I learned a lot. It scared me how severe the reaction was considering she never even actually swallowed something. but about two weeks later, she, and I don't even know what triggered it, but she just decided she wasn't eating and. There was no telling her otherwise. So she started essentially starving herself and the only food she would eat was cherries. And I don't know why black cherries were what she chose. But for about two weeks, that's all she would eat. So I had her in with her primary care and our allergist and they were all scratching their heads.. She started losing significant weight, obviously very quickly. So 20 percent of her body weight. And that's when she really got on, on radar of we were concerned that it might need to admit her, we would beg and bribe and. Do everything we could, but there was no changing her mind and her allergist explained it as though her mind knows she had a near death experience. So if I don't eat, then that won't happen. So we had to spend a lot of time explaining that if she doesn't eat, she could also end up in the hospital or very, very sick, which is just like a hard conversation to have with her. So I. At the time, six year old. She struggled for the entire summer. I mean, we got up, I think by the end of summer, she was up to like five foods and it was painful in every way. It impacted our whole family and she didn't want to go to a restaurant. She was scared of everything. We pulled all of the foods that have her allergens in them out of the house. Thinking it would make her feel better. She still didn't trust it. So at that point, our allergist put a call into a colleague, we live outside of Philadelphia. So we have the Children's Hospital of Philadelphia in our backyard. They were doing the chop allergy bravery program, and it was an immersion therapy. A week program, and she got, I know it has a very long wait list. I think at the time it was over 6 months, but because of her significant weight loss and the severity of. Of her fears. She got started into the program. So we did that for eight weeks. And that was immersion therapy and it was a virtual and it was incredible. she would have to hold her allergens and she would have to smell her allergens and I would have to at the end of the eight weeks, I would have to eat one of her allergies and then kiss her on the cheek, but it really educated her on her allergies in terms of if it doesn't go in your eyes, your ears or your mouth. It cannot hurt you. she also would ask over and over if something is safe and she would do this thing where she would stick her tongue out to make me look to make sure it's not swelling, throughout her whole meal, they gave me really wonderful tips. I would say Ellie asked once answered once. We cannot do this circle in the drain of confirming that it's safe. I've told you it is and you need to trust that it is. So we did the chop allergy bravery program by the end. She had gained a little bit of weight. She was eating again, I don't know, eight foods. It was a big deal. It was twice a week. She would have to share something she did that scared her or a food she tried. and at the end we got into a space that was manageable, but. Anxiety was still unmanageable. it was in almost every sense of the word ruining her life and our lives. No restaurants, no play dates. she wouldn't go on a date if I wasn't there the entire time, if I didn't pack the food that she brought, to the play date to her school, she wouldn't eat anything. Except her eight foods. So at that point, the CHOP allergy bravery program suggested, they said, she's doing great in terms of she, she could go through a session and hold her allergy. Like that was incredible. there, this is like a psych thing at this point. This is a full blown, she needs to manage her anxiety attached to it. So we started seeing a private therapist. We see her once a week, virtually. And it has been, incredible. That's probably been the thing that's changed. I don't know what was more important or what changed her world more. But, um, the therapy has, we're almost back to normal, but it was every bit of 12 months Ellie's fears and anxieties associated with food. Yeah,
squadcaster-2e07_2_07-11-2024_143644:process, I've heard amazing things about that program and in Philadelphia. And it sounds like that was the initial stage of just getting her to be able to eat. enough to for her to not be able to be sick. Yeah. I'm curious about what back before you were able to get into that program, you said it was a couple of weeks afterward, right? Before she started, you started seeing those changes.
kelly-guest500_1_07-11-2024_143703:I'd love to know your thoughts on that. just because she was totally fine. I think she went to school the next day and got lunch. She ordered cafeteria lunch. You know what I mean? I don't know what clicked in that six year old brain. That one day she was just like, no.
squadcaster-2e07_2_07-11-2024_143644:Yeah. a lot of times, not just kids, many people, when we have something traumatic happen, our brain will kind of block it out. to protect us. You know, it's not uncommon to hear of people who don't have a memory of a traumatic experience or that it's very fuzzy. So after something traumatic, we tend to just go back to, we want to get back to the norm as soon as possible, right? And you did the right thing by it. You said we sent her back to school. She was ready. That's good. Because all those familiar things. us a sense of safety, right? And control and familiarity. And so then sometimes it isn't until after a little bit of time goes by and the body is, is getting through that crisis mode, right? Just, I got to get back to safety. And then we start to think about what actually happened. And then sometimes the, the memories or the
kelly-guest500_1_07-11-2024_143703:Yeah,
squadcaster-2e07_2_07-11-2024_143644:you know, tend to come up and it does often take a little while for many people who've experienced a trauma.
kelly-guest500_1_07-11-2024_143703:right.
squadcaster-2e07_2_07-11-2024_143644:not surprising. But it's confusing, right? I thought she was fine.
kelly-guest500_1_07-11-2024_143703:Right. And then it was once that started, once that experience, at that two week mark, it was really challenging figuring out how to get her help. That was, it was something I wasn't prepared. It was a full time job. I mean, I think I called like 17 clinicians and everyone's, they didn't, weren't picking new patients. there was just many reasons why no one could help. So I, Feel very fortunate that I had the time and the resources to be able to really focus. I don't know what someone else does in that role. Living that experience because it was hard work getting people to listen to me and take me seriously and, and, and voice my concerns. And then ultimately all of my hard work, advocating for Ellie was what got us into that CHOP program, which I think. What's the first step in, in her getting better? Aside from Eleanor's anxiety, of course, my husband and I had tremendous anxiety attached to her food allergies, especially following that event. And it's hard because as a mom, I'm trying to fake, I don't want my worries to, for her to pick up on them. But I mean, I remember one time recently we went to a restaurant and And we had sat down and order was just me and the girls. And I looked in the bag as we started eating. And I always, I have her EpiPen in a big yellow bag and it wasn't in there. I don't know why it wasn't. I always leave the house with it and we had already started eating. And I immediately was like, Oh, you know what guys we're going to go. Like I immediately panicked. I. I was like, we're not, I was like, I need to get this food to go. I needed to be near that EpiPen. Like we could,
squadcaster-2e07_2_07-11-2024_143644:Mm hmm.
kelly-guest500_1_07-11-2024_143703:and she's like, why are you doing, what's wrong? What's wrong? She's like looking at me and I'm like, nothing, nothing. I, um, I just want to get home. Daddy needed something, but I'm trying not to tell her. And I am spiraling in my head and it's really, I wish that weren't the case, but then I doubt, I go back and forth. I'm like, yeah, just. it's not worth it for there to God forbid be an issue, but also like, what is the likelihood that this is going to cause something. And I'm ruining a special moment with my kids. So those things happen often in terms of like, I don't, we don't do things because we're not near the Epi, you know, like, Oh, we ran Charlotte from ballet. They want to get ice cream. I just grabbed my car keys and came. So we're not going to be eating until we get back to the Epi. it's all consuming. The other part of it is educating others. Like my in laws and my parents, you don't want to scare people, but you also need them to understand how serious it is. and that's a challenge for them to take you seriously and for them to understand, what that looks like. Sesame is a really big one because it's in a lot of things that people don't understand, they, I, we were at a picnic this weekend and I said, can I see your hot dog buns, uh, like wrap like label? And they're like, oh, there's, I said, we have a sesame allergy. So they said, oh, there's no sesame in it. And I said, can I just check it? And I checked it and there is, but people think if you don't see the sesame seeds on the bun that it's there and they're like, really, you know, it's like, they don't believe me. I'm not like, this isn't fun for me either. So.
squadcaster-2e07_2_07-11-2024_143644:We have sesame too. And there's this whole thing that those of us who manage a sesame allergy know with it being added to the, top allergens. And then a lot of these bread companies began intentionally including it as an ingredient. We now have sesame and a lot of things that either didn't have it before we wouldn't expect to. And if you're at a party trying to have fun and you're trying to explain all of that to your in laws or your neighbors or whatever it might be, you can feel so frantic because we have all this information in our heads that, not only to get it across, but to do it calmly, the way that we want to, that we're trying to model this calmness can be so difficult when people just don't believe us or understand.
kelly-guest500_1_07-11-2024_143703:Right. Yeah. So, I mean, I also see a therapist to manage my anxieties around Ellie's food allergy. And I do like some check ins with our allergist because sometimes I question myself and I get confused. We don't have food allergies in our family other than Ellie so then people will even ask me questions about things. Someone asked me about peas the other day. Can she have peas? Ellie said, I eat those at lunch. And I said, you do? Cause I think that's a lagoon, but I didn't say that to her. So I call the allergist. Hey, when you Google it, it says they're a lagoon. We avoid all lagoons. She says, well, she eats them. Let her., it's just feels so crazy that you've been doing this at school, you know, it's a lot of learning together and anxiety together.
squadcaster-2e07_2_07-11-2024_143644:Well, and I think the tough part of that scenario that you're describing is. Of course we want all the information, but we never have all the information. So then we find out something like that. We look back at like, how didn't I know that? You know, we kind of beat ourselves up or we feel afraid for, Oh no, she was eating it at school. And what if she hadn't been okay with those because she can't eat these other beans. And it's so hard not to beat ourselves up. And to remember, we just can't, there's no point at which now we have all the information and we can move forward.
kelly-guest500_1_07-11-2024_143703:That's where I want to have check ins with my doctor because I'm like, just remind me, what are things that I might not consider or think would have. Beans in there, you know, so I agree with that completely. It does feel like I'm the keeper of all. And even with my husband, he's a great, uh, partner, but it falls on me. She doesn't go to him to look at labels. Another thing that we do just thinking about restaurants is we've, I've started pulling her in to the conversation to make her feel more comfortable. So when we do dine out, I explained to the waiter or waitress, Eleanor has some food allergies. Can I please tell them what they tell you what they are? Can you write them down? That seems to really make her feel more comfortable. I, the trust thing for her anxiety is really huge., she really counts on that. So I worry if she would lose trust, she can trust me and I will do my best. Some 16 year old waitress that like, doesn't think allergies are a big deal. And, you know, fake writes it down or writes it down and tells the chef that the chef doesn't understand. You know, that's something that keeps me up at night.
squadcaster-2e07_2_07-11-2024_143644:There's a lot of what ifs, right? I'm sure she has her own, but for you, knowing that scenario at a restaurant could, you realize, could create this back down into that anxiety that you've worked so hard to pull out
kelly-guest500_1_07-11-2024_143703:Right, exactly.
And by practicing with her at the restaurants, you're giving her a sense of control. You're giving her tools that she can use to take some of that power into her own hands and exert that over what she's eating and what she's deciding to put in her body. And another piece of what you mentioned that you're doing along with that is bringing back to her awareness that she has to get the allergen in her body to have a reaction. So that's another way that you're giving her a sense of power and control in terms of knowing that allergens exist around us, but she has to have control. put it in her body to have a reaction. I think that's a conversation that all parents should have with their kids Talking about having the allergen actually have to physically get inside of your body, gives kids a very concrete and a very visual way to. Imagine and picture the scenario. If they had been around the food and realize that there's not a possibility that it got in their body. It challenges that worried? Well, it was around me, but I can't have a reaction because it didn't get inside of my body.
kelly-guest500_1_07-11-2024_143703:And we talk
squadcaster-2e07_2_07-11-2024_143644:right?
kelly-guest500_1_07-11-2024_143703:about like, she's the boss of what she puts in her mouth. that's amazing. So you ask and we can check for a long time. During the last 12 months, we went through a phase where we literally just basically a only label. Like it was so bad, like the processed foods, you know what I mean? But she felt a lot of comfort with the label as opposed to a restaurant or, even fruits, and I'm like, Ellie, it's like the only ingredient in an apple is an apple, you know, but we just became a label family for a period of time for her. She could, I mean, she couldn't read well, but she would kind of like, scan it and that gave her comfort. So, yeah, I agree. She would be like, is this safe enough for me? You know, like an apple. And I would be like, Ellie, like an apple. You want to know the ingredients in an apple? It's an apple. And then she would go, yeah. Beans in an apple? That would be weird. And we would talk, I'd be like, what if there was like walnuts on an apple? That's weird. You know? And we would like try to be like, I would like to like talk herself off the ledge, you know what I mean? Talking through it, how that doesn't make sense. Why would that ever be?
squadcaster-2e07_2_07-11-2024_143644:Yeah, which is perfect. I mean, that's a great way to guide her through talking herself through those thoughts that are coming up because, you know, we've all experienced it, even though logically you have this worry popping up. It doesn't make sense. It still feels real. You still feel scared, right? And then to kind of, in a joking way, which lowers our defenses, talk through it the way you're doing is a great strategy. When you shifted from that program to the private therapist, can you talk about that? It's, it's hard for people everywhere to find a therapist these days. Many, there aren't enough of us and everyone's overworked. But tell me how you did that search and then how you picked, chose someone to work with
kelly-guest500_1_07-11-2024_143703:yeah. I went through my insurance and found a list and then I just started calling, I was so desperate. I interviewed, I think three people, one in person in our area and then, and then two, virtually. And I just really liked this one, one therapist. She just was, was very kind and gentle and patient and. Ellie responds very well to her. So we just, we thought we would just start like, let's just do one session. And then it just kind of progressed. And now she's into talking, not just about our food allergies to, she's talking about, what happened at school or, it's just like general therapy, she's actually like graduated just recently she'll see her on an as needed basis, but she just thought she's, you know, Ellie's finally in a really good place, but for some period of time, that's all we talked about was food allergies. But then we got to a place that Ellie didn't need to talk about food allergies for 40 minutes, you know, so we would touch on it. She would challenge her to try a new food that week and then come back and tell her about it. And how she liked it. And that's something that she's really helped her understand because she has these certain foods that are oftentimes she likes, like an easy Mac cup, or dinosaur nugget, but she, she used to be such an adventurous eater and she left my cooking and now she won't eat any of it. So that's been something that she's worked with. With Ellie on was like, you know, your mom is going to, she's going to cook it and she can lay out all the ingredients and you can look at them to make sure you're comfortable with that. And then she's going to make that. And I explained to her that it makes me sad that I know something is completely safe for her. And that. It is something I know she would absolutely love or she used to love it and she's missing out on it. And so I haven't been pushing her on. If she doesn't want to, I don't like, beg, plead. I'm like, I don't, I just. So, okay, I'm sad that you're going to miss this deliciousness, but what would you like? And we move on. Sometimes she'll come back to it and she'll be fine. Okay. I want to try it. And she's like frustrated. And then she'll eat too. She'll be like, can I have more? And she'll have two bowls. And I want you to pack me that for lunch tomorrow. I'm like, Ellie, I told you, I told you it was safe enough for you. And I told you you would love it. And I, I, You know, and she's like, I'm so glad. So now we're building, and this has only happened recently where we were getting a short list of family meals that we can all eat together finally, after a year of Ellie was, we were really making a separate meal for Ellie every night, which was hard because then the other kids wanted different things. And then it was like chaos.
squadcaster-2e07_2_07-11-2024_143644:I was thinking about that, especially with her being a twin and all of this, different treatment and her having the allergies and her twin not having the allergies. I was curious about, the impact on the kids and the siblings and the family with all of this.
kelly-guest500_1_07-11-2024_143703:Um, that is something I think about often it was very manageable. I felt like they were all treated as equals and they were all, they got equal, time from us. But the last year it's been, it's been this health journey that we've been on with Ellie that. I have to be cognizant of doing special, we call them like special mommy dates, special daddy dates that we take the others out. The hard part is that Ellie doesn't consider her time spent with us, which is often at the allergist or at a weight check that's not like special mommy or daddy time. So then I have to do more time with her also if we get a pedicure or we go to the grocery store with one on one, they love it. But it is something when Ellie had her allergy that night, that reaction. And we just ran out the door with her to the hospital and my husband stayed back with her. Charlotte immediately retracted into, we have like a little craft room off the back of our hat. We call it the craft room. It's a sun room. And. She was like, like drawing, like just sitting there drawing, like she becomes very much part of the landscape when there's an emergency, like when we've had these situations with Ellie that are scary to where she's just, she wants to get out of the way and she's worried. And I know she is. So she was just drawing a card for Ellie and my husband went back to like check on her and she just had like one tear running down her face. Like as she was drawing, That could like make me cry. So it's scary for everyone, you know, our whole family's impacted by that. Yeah, there's nothing to fix about it. there's nothing we can do. We're just all doing our best.
squadcaster-2e07_2_07-11-2024_143644:Yeah. You've described a lot about talking about feelings with them and that sometimes we just have to allow that sadness, right? We just have to accept that unfortunately sometimes it's sad and it's hard and it's frustrating and all of those really tough emotions that we want so badly to fix for our kids and we can't.
kelly-guest500_1_07-11-2024_143703:Yeah. And it's frustrating I have friends that have allergies, but they. You know, they're able to do like those challenges and stuff. Like we're just not there. And people love to give you opinions and suggestions. And it's like, like, that's not an option in our world. So just accepting the reality where our whole family is just has to do. I can now talk about it. Like almost like it's in the past. Like, it just feels, I mean, like if you spoke with me six months ago, it was just a really hard year. and the anniversary of it was just recently, and we were going to that same music festival. And I said, Ellie, do you know what today is? And I, and she was like, what? And I said, Ellie, a year ago is when we went to that chocolate shop. And she was like, I said, look how far you've come. So if I ever have to. Get cherries again, you know, like it was just trying to make her like laugh because she's back to eat and cotton candy and hot dogs with no bun and you know All the things that like, you know, I just I'm just grateful that she is in a better headspace this year. She wears a bracelet to school most of the days if she remembers it. Um, and she has like her little land yard, so she's not embarrassed of her allergy. In fact, I think she prefers for me to like say it loudly. So everyone's on the same page. I don't know when that will change. Do you see that sometimes
squadcaster-2e07_2_07-11-2024_143644:It does. And it's different for every child, but usually when they get around that middle school ish age, it might not be shame. It might not be that they're embarrassed about it, but some kids then want to take ownership of it and they want to be the ones who advocate more, more so than mom saying it. Some kids definitely, yes, don't want that visible thing that, you know, medical alert bracelet or that EpiPen. pouch that is labeled, she's seven now, right? So hopefully you have a little time to prepare and maybe she won't go through that phase as allergies are becoming more and more common. I think, we still see that, but kids are. I think feel that it's normal for them to have an allergy because most of them have multiple friends at school. a lot of them have another kid in their class. There's, at least one, but usually two in every class. So hopefully that helps when she gets to that age where she's maybe starting to feel more
kelly-guest500_1_07-11-2024_143703:you're exactly right. I don't know. I don't remember anyone having allergies when I was a child. So, I mean, every day we're taking it one day at a time. we had a little slip up recently where we had gotten an Instacart order that I didn't unpack. My husband unpacked and then he made something and it had like, may contain traces of almond in it, and that was, it was 10, it was 10 steps backward for not, we weren't back to day one, but it was like for several months it was a real setback. And I just know that's probably gonna be. Our, our world and our life of like, she'll have really good periods of time and then she might have some setbacks, but just as long as we don't get to where we were, or if we get to where we were, we have the tools in place to like, try to get out of it as quickly as we can, as opposed to, I think it was almost three months where she was not, she was eating cherries, watermelon and dinosaur egg oatmeal. That just wasn't sustainable. now I at least have the tools of immediately implementing, it is what it is, right?
squadcaster-2e07_2_07-11-2024_143644:It is, and it sounds like you're doing the right thing by each time you have one of those things just pointing out what you've learned about it. Oh, we didn't think about the Instacart or we didn't think
kelly-guest500_1_07-11-2024_143703:Yeah,
squadcaster-2e07_2_07-11-2024_143644:you know, we've gotten substitutes, like before I learned when Instacart was new, how to turn off. The option for them to substitute or learned that I need to be available to answer their questions so that I don't accidentally get something right. of these things again, we can't think of everything and anticipate it. We we get a new piece of knowledge. We get another little nugget of good information to move forward with. and it does feel scary because it could have been right. Always to emphasize that it was okay. And we learned from that experience and keep learning is just, um, you know, and I, I like to relate it a lot for kids. That's life. That's not life with allergies. That's just life. Right. So with us, it might be specific to this, but everyone has their things that, that are hiccups or bumps in the roads or swerves on the journey that we, that we Learn as we go. And unfortunately, sometimes ours are very scary. Um, but we can minimize them.
kelly-guest500_1_07-11-2024_143703:right. Yeah, I, I, I went on an anxiety spiral and set back when, that, ballerina in New York City got like a mislabeled, um, cookie. I, my doctor, my allergist for Ellie, like feel in many calls of concerned parents because, you know, you do everything you can. And then for that to happen, and she said, Kelly, it's something we talk about as allergists often is at the end of the day, it's more dangerous to drive to your allergist appointment than it is to live it truly. That's a very rare and awful, like kind of like a lightning bolt experience. And she said, I don't, you know, um, she didn't know much about it, but she said, my gut says that the key is epinephrine fast. And so, and that's kind of where I hang everything on this epi, that's my, like my security blanket.
squadcaster-2e07_2_07-11-2024_143644:Absolutely. Because that's the one thing we know for sure. We know that epinephrine works. We know that it's most effective when you use it immediately. Right. We don't delay. So that is our security blanket. So many people are afraid of it, but really I want everyone to think of it as like, I've got my hand on the Epi or I have got, if you can feel it in the pouch, so I know we're good because that's always, no matter what
kelly-guest500_1_07-11-2024_143703:yeah.
squadcaster-2e07_2_07-11-2024_143644:the thing that we can
kelly-guest500_1_07-11-2024_143703:Yeah. And a couple months ago I was at a friend's house and I had to buzz out, she was going to watch the kids. And so she's like, can you just like remind me, I don't know this, but she's a school nurse. And I don't, she just had not seen this version, whatever one it was. And I was like, oh yeah, yeah, yeah. So I'm like, so like, so I pulled out, I take it out and I, um, like I shoot it into my leg and it was a real one. My tester was replaced with the, I don't know how that happened or why, but I upbeat myself. There was three real ones. You know what I mean? How it's like two and then the tester, like, I don't know why we
squadcaster-2e07_2_07-11-2024_143644:Right.
kelly-guest500_1_07-11-2024_143703:in the box. So I, I beat myself and I have a heart condition. Like I'm not allowed to get my blood pressure off or anything. I was like, Oh my God, here we go. I'm going to have to go. But, um, it was really good for me because. It didn't hurt. And to the point that I showed her and I like shoved into my leg, it like didn't even really hurt to the, I was like, did I, I think I might've just like, I beat myself. And then I was like, no, it didn't like, it didn't hurt that much at all. It hurts so little. And then I pulled my, my dress up and there was like blood running down and I was like, Oh my God, I did it. But that was really important for me. I had this feeling. Fear of administering. And I don't know why I did IVF. Like, I don't know why, like I'm fine with needles for the most part, but and then I even got to feel what the feeling is associated with it. You know, like they got like kind of like the adrenaline and everything. And I won't think twice about administering in the future. I oftentimes would get to the hospital. Like, I mean, I've only done twice, but I went to the hospital and then. administered. Like why? It was just because I was scared I was going to screw it up, but I needed to remind, like now I'm like, Oh, I have no problem doing it. I would be, you know, I wouldn't even flinch. I would just do it immediately.
squadcaster-2e07_2_07-11-2024_143644:Right, right. And I think for each of us, whatever it takes to get us through that. I'm going to be doing a workshop a psychoeducational group about exactly what you're talking about. Why are we so afraid to use it when we know and working through that, giving, you know, information on, on how it works and why it works. So we know, and then challenging some of the fears around it that we have, because it's our number one defense. It's universal, So many other things differ for each of us in terms of what's the right thing to do to manage our allergies, but that's, that's the baseline for
kelly-guest500_1_07-11-2024_143703:Liz, I think you'll, I think it's a very important course that you're going to offer because a lot of my allergy mom friends will say, you know, we taught, have you ever had to administer it? And, you know, and they'll be like, Oh God, no, I'm too scared. Like I always just go to the ER. Um, and so, I think educating and just, yeah, I don't, I don't advise doing it to yourself. Um,
squadcaster-2e07_2_07-11-2024_143644:here as a professional with you, but it's a good lesson to
kelly-guest500_1_07-11-2024_143703:yeah, it was less than a flu shot. I mean, it was nothing at all. It was, it was so little. I thought maybe I, I didn't do it and I just thought it in my head. So that gave me a lot of comfort.
squadcaster-2e07_2_07-11-2024_143644:Well, and I, I think you've said a lot of good things. You know, touching on this all the way through, but, you know, you mentioned leaving the restaurant when you didn't have the epi, you mentioned we started our interview late today because it came to your attention that it was expired, the refill was ready and you went to get it, which I'm so glad you did. best reason ever to be late because, you know that now, now that you've had those experiences. And so I think you're doing a great job, even though you described feeling stressed at that situation where you were. Not wanting to leave the because of the epi, you didn't want to alarm the kids, but I think that's the best example that you can set. And later when you're calm, whether you want to touch back on that issue or just moving forward, it's perfectly fine. I think for parents to say, I just realized we don't have it. The rule is We don't eat my rule with my son is we turn around. It doesn't matter if we're late, it doesn't matter what we're going to or what we're going to miss or whatever the circumstances are, if we forget it, or if we're in the middle of something, we go home, we go home and
kelly-guest500_1_07-11-2024_143703:Yeah.
squadcaster-2e07_2_07-11-2024_143644:and obviously we try to avoid
kelly-guest500_1_07-11-2024_143703:Yeah. Yeah. We've done it where we've realized we left it, um, like on the way to a vacation and we've called like the allergist and had them order it to our desk, like, you know, if it's a two hour drive or whatever, we've had to get new one. Yeah. I mean, you just cannot live without
squadcaster-2e07_2_07-11-2024_143644:Nope. I'm wondering if Ellie has talked about that much. Does she feel the same way? What does she say about you epi ing yourself?
kelly-guest500_1_07-11-2024_143703:it. She thought it was hilarious. And I was, and she was like, Oh, it hurt. Didn't it? And I was like, actually, I didn't think it hurt that bad. She's like, it hurts so bad, you know? But she's just, I think she was just scared in the moment, you know? But, um, I, I'm curious. She'll say, she doesn't like me to say like Epi. She likes me to say do you have the yellow bag? And we're leaving the house. We keep band aids in it and other things as well. So I think it makes, she just doesn't like them, like talking about it. So, I'm anxious this year. We started giving her her Epi to take. We, I do an extra one to go in her backpack. I get nervous. They have a long bus ride and. She knows not to eat things, but like, gosh, if she sees, like, I don't know, you see Eminem one day and you're just, you know, like I, it just, so I, I now send her with one on her to school, in addition to the nurse's office and everything, but she was nervous at first and now just lives in there and she's comfortable with it. So I'm anxious or I'm looking forward to the time that like. You know, she just has a fanny pack or she has a bat, like a little cross sling that it becomes part of her world and her comfort zone. I think that'll make her feel more in control than having to make sure mom or dad. Or the soccer coach or anyone, you know what I mean? Like when she can take control, I think that will be for her. And I mean, is, is seven too young? Like at what point can I do that?
squadcaster-2e07_2_07-11-2024_143644:I encourage people to start as soon as possible with the child participating. And the way that you're doing it now is that she's carrying it and there's a backup. my son's 13 and I still always have, his epi well, even if he, right? just in case. but yeah, I don't think it's ever too young to start as long as they're being supervised, right? Obviously, I don't want to encourage people to leave their child alone with the epi out. But when they're, Out and about in the world. And the adults with them should know that they have it and know where it is and know what it's kept in. I think that just gives them the confidence because that also helps them to develop that mindset of, I always have it, I'm, I'm good. As long as I
kelly-guest500_1_07-11-2024_143703:Yeah,
squadcaster-2e07_2_07-11-2024_143644:you
kelly-guest500_1_07-11-2024_143703:it could really set her worries at ease even more if she was a part of the plan.
squadcaster-2e07_2_07-11-2024_143644:Yeah, and I think I would suggest I, it sounds a little bit avoidant that she doesn't want to say the word, right? So you're working around that and we say the yellow bag, that might be something to work on with her therapist because that might build the confidence around her up. And like, we want just to think of that as our best friend. That's a great thing. So that might be a good area for them to work on. Maybe she could start calling it my medicine, you know, do you have your medicine or explore with her some language
kelly-guest500_1_07-11-2024_143703:Okay.
squadcaster-2e07_2_07-11-2024_143644:Gets closer
kelly-guest500_1_07-11-2024_143703:Yeah.
squadcaster-2e07_2_07-11-2024_143644:calling it what it is because Yeah, we want her to, she's tolerating it right now. Right. But she doesn't wanna think about it by not saying
kelly-guest500_1_07-11-2024_143703:Right. But she knows, so we should just call it what it is. So,
squadcaster-2e07_2_07-11-2024_143644:Yeah. And I would work with her to figure out how to get there in a way that feels okay. She's doing better, but she's still had this really scary experience with it. And we don't always, you know. Associate that. Well, that's the thing that saved me. That's the thing that made me better. It's in our minds. It's just part of that scary thing.
kelly-guest500_1_07-11-2024_143703:right. That was my near death thing. That was, yeah. Like that was a, I agree. Yeah. That's a good point. I'm really excited to kind of change the narrative around poor epinephrine that has such a bad name. Yeah,
squadcaster-2e07_2_07-11-2024_143644:I appreciate you so much taking the time that if you want to do that course when I offer it, I would be, I would love for you to do it, um, you know, on me. To join me.
kelly-guest500_1_07-11-2024_143703:that with me. And yeah,
squadcaster-2e07_2_07-11-2024_143644:I will. It's just for the parents, but it will talk through our stuff and then it'll give you tools
kelly-guest500_1_07-11-2024_143703:I
squadcaster-2e07_2_07-11-2024_143644:use with your
kelly-guest500_1_07-11-2024_143703:would love to,
squadcaster-2e07_2_07-11-2024_143644:So
kelly-guest500_1_07-11-2024_143703:because it is a unique audience in terms of like the club. It's like a crappy club to be a part of. Yeah, while there it is more common than ever before to have an allergen, like it's defined a support system that you jive with and gets what you go through on a daily basis, you know, as in terms of like another, another, you know, allergy family, it would be really wonderful to just kind of commiserate and, and come up with plans and ideas to help, Live with, your reality,
squadcaster-2e07_2_07-11-2024_143644:Yes. And I think it's so good to brainstorm with other people, and hear, not just to hear the ideas because you know how it is. Sometimes people come at us as you mentioned before with, Oh, don't you know about all these treatments? Right. And people are trying to be helpful. And I think people can do the same with suggestions. Well, why don't you just do this? But it feels a little overwhelming when you're not in a place to be receptive to it. And I think creating a group space, like you said, where people get it and we're really talking through it, not just someone firing solutions at
kelly-guest500_1_07-11-2024_143703:right?
squadcaster-2e07_2_07-11-2024_143644:It's more helpful because it can be really easy. We feel defensive. We feel guilty as heck about anything, even when it's not our fault related to our kids allergies. So sometimes it just feels like, someone being helpful. Why don't, why don't you try this feels like, why didn't you think of this? You should be doing this right. And it's.
kelly-guest500_1_07-11-2024_143703:Right. Yes. I agree It was just like when I had twins everyone gave you advice about parenting and it's like you just don't understand what I'm dealing with With newborn twins. It's the same thing with the allergy stuff so I am way more I was very receptive to twin moms that gave advice to me because Like they get it. And I think I would feel the same way with an allergy parent. even like the things you're mentioning of like how she won't call it the yellow, she calls it the yellow bag, that isn't like, she needs to acknowledge what it is. And, working through those things, I think that, could be a good goal of ours to get to the next level and her like heal healing journey.
squadcaster-2e07_2_07-11-2024_143644:Right, because it really is a process. It's layer after layer. So I was hoping you could, just share looking back, obviously a year out, would be helpful for parents who are unfortunately in the shoes that you were in a year ago? what do you think would have been helpful for you to know? What would you tell yourself back then?
kelly-guest500_1_07-11-2024_143703:Um, what I would tell myself is to keep advocating, like, keep pushing, her primary care was just, they kind of shrugged their shoulders and suggested weight checks every other day, but like, she was just losing weight. Like, this isn't the solution. What is wrong with my child was perfect two weeks ago, you know, and now she It was awful. Her eyes were sunken in, she's pale and she's frail. We talked about even going into the emergency emergency room at one point to hopefully get her into, food disorder, programs, which, it was just all really hard to take in because it was, it was due to an event that happened. It was like a trauma, It was just different. It's different than many other, maybe more common issues children have around food. So what I would have told myself is to keep going because there were days that I was like, do I just like, accept that this is like our new, you know, like our world, you know, me just begging and pleading with her and crying. I mean, I was, I was, it was so hard. So, yeah, if I could tell myself again, I would be like, just don't take no for an answer. Don't take six months. Wait for an answer. Just keep going until you find a solution that works for your family, and talk therapy like immediately, like yesterday, start that as soon as you can
squadcaster-2e07_2_07-11-2024_143644:and I want to mention, too, just in case there are parents listening who've had similar experiences who don't know about it, I'm not necessarily saying this is what was going on with Ellie, but if people are having this struggle where the child is really restricting their food intake, losing weight, there is a diagnosis called ARFID. It's Avoidant Restricted Food Intake Disorder. It's, a disordered eating behavior that's not for what we think of. I want to be skinnier. It's not about body image. It's not about binging and purging. Um, And sometimes, not always with allergies, but it can cross into that. So I'm saying this because if people have trouble getting help, if their child is like Allie was and not eating and losing all this weight, programs who specialize in that or therapists who specialize in that, even if they're not necessarily meeting the criteria for that diagnosis, might be able to help better and more so than someone who, you know, doesn't. address eating issues. So that's kind of a newer diagnosis that a lot of people haven't heard of, but it's a term that might help you find the support you need if you're familiar
kelly-guest500_1_07-11-2024_143703:Right. And find someone in your area that maybe is more familiar than just like a general family therapist or individual. I agree completely because it is such a unique diagnosis of just the anxieties related to food. finding someone that specializes or is familiar with, the mind associated with that would be really valuable and probably save you some time.
squadcaster-2e07_2_07-11-2024_143644:Is there anything that you have questions about looking back now that I, from my perspective, could talk about or help you to clarify that you still wonder about what happened or why things unfolded a certain way?
kelly-guest500_1_07-11-2024_143703:um, what could the future, are there periods of time in terms of age that I need to be aware of, of questions that might come up? Are there like phases throughout her life that I need to be prepared for, um, that will be whether like unique or challenging or they get easier or any of those things. Are
squadcaster-2e07_2_07-11-2024_143644:do a whole episode on just kind of the different developmental phases and where what we tend to see. Obviously every child can be different, but there are patterns. I would think the biggest thing for you to know looking forward, is that. doesn't have to be something related to food allergies, so anything that's really challenging for her, anything that's maybe a different physical, you know, issue, if she gets a significant illness or an injury at some point in her life, this could get stirred back up again, and not to panic, to kind of be prepared, like you said, you've already got your supports in place if something happens, but I think we get so specific as It's food allergy, parents thinking about allergy, allergy. Oh, this isn't about their allergy, but all of the anxiety is tied together in the body. And especially our kids can be so focused on their bodies and, and the experiences that they've had, the symptoms that they have felt in their bodies, that anything that happens in that realm can raise those fears back up. It kind of helps them to resurface. So that's kind of general that anytime she struggles with something. any challenge, change, tough time in her life, this could feel bigger again.
kelly-guest500_1_07-11-2024_143703:you saying that she probably, because she reacted this way, maybe she has a predisposition to anxiety just in other aspects of life or is it her food, when, when things come up that are in anxious, her food allergy might be bigger. Like show his head also. That's
squadcaster-2e07_2_07-11-2024_143644:Exactly. I think there, whether or not she has a predisposition, at this point, doesn't matter. Some people do. There's lots of research on that, but she had a really terrifying experience. So that's not to say, Oh, she would have been, struggled with anxiety anyway, because obviously a really traumatic experience like that can leave anyone with anxiety regardless of, you know, genetic history. so, so yes, I think what you said as far as Anything that's anxiety provoking or steps her out of where her body and her brain feel like she's safe could stir up a little bit of this discomfort around food again and her anxiety, even if she doesn't recognize it, even if she's not articulating it in that way, just if you reach a point where she's struggling again, it might be worth checking in about, you know, how's, how's eating feeling? Because, you know, you're anxious now. That was something that made you really anxious in the past and, just to keep it on your radar in terms of. struggles in the future.
kelly-guest500_1_07-11-2024_143703:great. Thank you for that.
squadcaster-2e07_2_07-11-2024_143644:Was there anything you didn't get to say that I didn't ask you about anything you wanted to talk about?
kelly-guest500_1_07-11-2024_143703:I think the world of all of us allergy parents are just doing our best and we got to stick together. So I think it's important what you're doing. I, I just found Facebook groups and just Googled things when we were going through the thick of it. So, um, I love podcasts and I listen to them all the time in my car. So I think there's a real, I did. I could not find anything on this in the past. So I'm grateful, um, that there's a, a space for us in the podcast world.
squadcaster-2e07_2_07-11-2024_143644:Good. Well, I hope it's helpful. Please share ideas, share the podcast with people that you think might be interested. I want to ask everybody who's on the show to just share something great about having food allergies, something good, something positive that you can see, even though you've had a rough year.
kelly-guest500_1_07-11-2024_143703:the family bond. I think is the biggest thing. Like we are a unit and, we stick together and we support each other and. Yeah, as a family. It's brought us closer.
Thank you so much, Kelly, for joining us all the best to you and your family. And we really appreciate you sharing what it is that you've learned along the way so that other people don't have to struggle as much as you did, hopefully to find some help and to understand what's happening to them And so far, our listeners here are the three things that you can take steps to do. As soon as you're done listening to this episode, to carry some of the, what you've learned today with you into your life. The first is to find a document that has been put out by Mount Sinai's allergy clinic. If you do a web search for after anaphylaxis Mount Sinai, which is spelled S I N a, I you'll find it. Or I'll put the link in the show notes. This is just a great two-page PDF document. Talking about the medical aspects and then as well, the social and emotional aspects of the aftermath of anaphylaxis, how to cope, how to get back into your routine and move on in a healthy way and process what has happened to you. Number two. I want you to do what Kelly has done for us today and tell your story. Hopefully you've already done some of this, but there's a lot of healing and talking in trusted and safe environment about the traumatic experiences that we've been through. One of the important things to do. When we do talk about our story is to tell the story. The whole way through. And to let the stress cycle complete the whole way through until the end. So what we sometimes want to do when we get stuck in fight or flight is go over and over and over. One of the really scary parts. One of the moments that is stuck with us, I can't believe that this happened. I'm stuck on the image of his face or the sound of his breathing or the. When the person and the ambulance said this phrase, and we tend to ruminate and retail those parts of the story. And that's when we kind of get stuck in this pattern of rehashing and actually reactivating our anxiety. The brain doesn't know the difference between an imagined story and something that's happening in real life. So sometimes when we tell the stories in that way and get stuck on them, the brain and the body and the nervous system, experience it as if it's happening to us all over again. The way to avoid that is to move all the way through. To get to the end of the story and tell the part where the medicine worked. Where. Symptoms improved, where people rallied around and helped us where things went. Right. And did get us to a safe place, even though there was a scary part prior to that. And in kids, we want to make sure that we're encouraging them to do the same thing. Sometimes in our anxiety. We don't want to let them talk about their. Anxious experiences or scary traumatic experiences because it's re-triggering for us. But the kids are just trying to process and complete the stress cycle in the same way. So, what kids will often do is focus on our, continue to state or retail. Uh, detail of the story. Oftentimes a part that doesn't really seem like it's about the main part of the story. It might seem like an irrelevant detail to you. Um, or something else that happened that day. And when kids do that, that's them processing and working through their trauma and their experiences. And so we can do the same thing by listening, acknowledging, and validating their feelings and a safe and trusted environment. And then moving them through. To the safe part, to the okay. Part to the, everything is all right now. And here's why, and here are all the supports and safety precautions that we have in place that worked. Like got us to feeling better and safe and that we can use again and rely on again in the future. If something scary, ever happens again. So the retelling of the story, the important part is to get to in what we call the stress cycle, we have a stressful event. Our body goes into this responsive phase, which is our fight or flight mode. We can also freeze. We can kind of get stuck and where we need to move ourselves in telling the story is to the relief phase. This is where we know that the event is over our body is signaled that we're safe. This can include. When we're retelling stories, the physiological and psychological symptoms of the event being over crying and expression of emotion about the event. Telling the details of the conclusion of the event and the what's next to remind the body that that thing is over and it has happened and we have learned, and we have grown from it. And one of my favorite facts about that. If you don't already know this, is that. When we cry. Our body actually uses the tiers to help us remove cortisol and the stress hormone prolactin from the body. Um, and those are the chemicals within our body that create those emotions and stress. So we're actually releasing them through the tears and that's a signal to the body that we can return to a safe and calm state. And third, if you feel like you need some help with that, with anything around this confidence, responding to emergencies or recovering after emergencies, knowing what to do. It's not too late to sign up for my epi experts course that will be starting next week, August 21st, 2024. It's a Wednesday evening at seven o'clock. If you're listening to this episode, after that. Class has concluded in September. It's going to be available as a replay on demand course. So either way, reach out and look at my website. The link is in the comments D R Amanda White house.com/epi. Hyphen experts, hyphen. Group. And if that seems like a right fit for you, and you'd like the chance to work with me more in depth on some of these things, then I would love to have you.
squadcaster-66dc_1_08-01-2024_183435:Thanks for joining me for today's episode. I'm Dr. Whitehouse. And until we chat again, remember don't feed the fear.
