Don't Feed the Fear: Food Allergy Anxiety & Trauma
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.thefoodallergypsychologist.com
Theme song: The Doghouse by Kyle Dine, www.kyledine.com
Used with permission from the artist
Don't Feed the Fear: Food Allergy Anxiety & Trauma
Father’s Day Tribute with Thomas Silvera of the Elijah-Alavi Foundation
It was an honor to record this Father's Day and Men's Mental Health month episode with Thomas Silvera, co-founder of the Elijah‑Alavi Foundation. In this discussion, Thomas revisits the tragic passing of his 3-year-old son, Elijah, due to a fatal allergic reaction at daycare, and explore how that loss sparked a nationwide advocacy movement. He shares the Foundation's progress with Elijah's Law, and also speaks candidly about being a food allergy Dad, his own mental health journey, racial and socioeconomic inequity in food allergy and asthma, and what we can do about it.
Elijah-Alavi Foundation | Non-profit
The Anaphylaxis Strike! a book by Arevlis Sa-Moht and Thomas Silvera - Bookshop.org US
Reach out to me via my website Connect — Amanda Whitehouse Phd or on Instagram @thefoodallergypsychologist to be entered in the giveaway of Thomas' new book, The Anaphylaxis Strike.
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
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.. Thank you for joining me for this special Father's Day episode of Don't Feed the Fear. Today. I'm so happy to introduce you to or reintroduce you to Thomas Silvera, the co-founder of the Elijah-Alavi Foundation. Most of you probably already know who Thomas is because he's been doing so much work in advocacy and awareness. After his 3-year-old son, Elijah tragically lost his life after being served his allergen, a grilled cheese sandwich at daycare. The Elijah Avi Foundation does vital work in food allergy awareness and policy change, Thomas and I planned to talk today about the foundation and about Elijah's legacy as well as the experience of being a food allergy father in honor of. Father's Day, but we also touched on so many other topics, including the intersection of food allergies with social anxiety and trauma, the harmful stereotypes and jokes that continue in mainstream media. Racial and socioeconomic inequities in the food allergy and asthma world, and how to get involved and what we can do about it.
Amanda Whitehouse, PhD:thank you so much Thomas Silvera, it's great to meet you and to have you here on the show. You're doing amazing work. Your story is just touching for so many reasons and in so many ways, and I'm honored to meet you and have you here on the show.
Thomas Silvera, MSHS-PH, CST:Thank you so much for having me. Um, it's one thing I, I love to do is to talk about, not just my story, but highlight the, the work of so many others and you allowing us to have this platform to speak, you know, from our heart and not, you know, why we started our organization, but for the cause of why we started it.
Amanda Whitehouse, PhD:Yeah. Well, both the why is very important too. And, and many of us in this community have our why, but it's the story of your why and the foundations like yours that, are the ways that we get people to, realize this is serious and it's real, real people that we're talking about, which lends me into what you and I were just talking about before we started recording, why the world still thinks it's okay to make fun of it and why people make light of it. Still.
Thomas Silvera, MSHS-PH, CST:I, you know, it was so unfortunate and unfortunate, like the media, you got movies, even people in general and not all, but. It's one of the things that, you know, I, I love that what we do within the food allergy community, but the flood of like insensitive and cruel, like comments only highlights the deep rooted ignorance that still exist. And that's one of the things that's like, it's so baffling, especially when it comes around food allergies. Like this is, this is, this is isn't a joke. It's not something to joke about. It's about real life and harm that follows when society minimizes like a life threatening condition. And, you know, on what happened on the rose, the recent skit you know, not only did they play into the ignorance of food allergies, but it also played into using absurdities in their, in their, I understand it's, it's comedy. Comedy's supposed to make you laugh, but when you start targeting people, like, like why, why should we do that? You know, I don't. Go ahead. No, it's just insensitive in general. And then we get a lot of trolls that want to attack that. But again, it just highlights exactly the ignorance of the message we're trying to say. No one understands that. And two, the funny stops when it happens to them, happens to a loved one or anyone close to them. And then they're like, oh my God, this is real. And, and, and that's the thing that baffles me.
Amanda Whitehouse, PhD:Right? And, I think that's understood for a lot of other things.. We don't get on TV and make fun of kids dying from cancer. We don't get on television and make fun of other medical conditions. And so that's the part of it that I get stuck with too and baffled. Why is this one okay or considered fair game when nothing else is?
Thomas Silvera, MSHS-PH, CST:It, it's weird because no one sees it as a real threat in a sense. You know what? Even I go back to when my son had passed away, Elijah, when he passed away looking at those comments, I had to kind of like pull myself away from it because it was like jaw dropping and like, oh my God. And then even the racial responses on that, like, I won't even tell you what some of those responses were, but they were absurd. And, and I was like, it, it was nauseating in a sense. So when you see comments like that, I literally, I shut the comments off on one of my posts because the continuation of the ignorance that kept flowing, it's, it's like we can't stop it, but we can still do something about it. And again, it's like coming together on that platform and keep pushing the narrative on the severity of food allergies. And we know that, you know, there is no cure, but we have to find a way to mitigate and protect. Everyone who has these food allergic conditions and, you know, and not just this conditions, and I love other platforms that do the same and fight for causes that, that are passionate and, and, and pretty much just embedded within their hearts.
Amanda Whitehouse, PhD:Right, I appreciate, you sharing Elijah's story, because that's what makes it real. I think that's when, when we can get people who maybe haven't experienced a loved one who's had a scary event to, to show them these beautiful children and make them realize that this is real and these are actual people that you're hurting. I'm so sorry, obviously for all your losses and then the horrible treatment that it sounds like you got afterward.
Thomas Silvera, MSHS-PH, CST:Yeah. All I have to do is shake my head and that's where we, why we're at the position where we are today with our organization and everyone who does the same. You know, it's like, it shouldn't take tragedy to create change, but if it must, this is what we need to do in terms of the progression and push it forward. Push forward the agenda, creating change, whether it's in policy education or working with outside that niche of food allergies or food sensitivities or whatsoever to bring that information to those, um, um, pretty much uncharted areas.
Amanda Whitehouse, PhD:Yeah. And just in case we do get some people outside of that little circle of food allergy, uh, most of us know who you are. We know your story and we're so appreciative. But let's back up and let's talk about your wonderful child, Elijah, and tell us about how you came to be doing what you're doing now.
Thomas Silvera, MSHS-PH, CST:Yeah, so just a little bit about me, like my name is Thomas, where I'm a father, a public health advocate, a researcher and co-founder of the Elijah Lee Elijah Lavie Foundation. But before any of those titles kind of like came to me, I am more importantly Elijah, my son, Elijah Elvie, who had passed away November 3rd, 2017, due to a food allergic reaction that happened at his childcare center. Where an educator had fed my son a food that he was severely allergic to, even though they knew the food he was allergic to. And he had a special two special meal plan designed for him. They didn't give it to him, which they gave him the other meal, called him to go into anaphylactic shock. The part about that is they did not understand the signs and symptoms, even though they assured us as myself, myself, and Elijah's mother, that they did, knew how to understand the signs and symptoms and how to administer epinephrine. They failed. They dropped the ball. Why he went into anaphylaxis, because they didn't know how to identify. When a childcare center assures you that they are educated and understand those things and they miss that mark it, it just creates such a catalyst for tragedy and that's what happened. I wouldn't be here talking to you about this if that didn't happen to him, but I'm here sitting with you having this conversation. From that moment it just shattered me and, and my wife at the time, his brother families and people everywhere to hear such story, it took my breath and my direction to a whole different, uh, a whole different direction.
Amanda Whitehouse, PhD:Right. And there are, unfortunately, there are many foundations, right. Multiple organizations fighting the same fight for the same reason. But I love that you really are targeting with Elijah's law and the work you're doing specifically the holes and the cracks in daycares, because like you said, we're dropping our babies off at these facilities, trusting them to keep them safe and it's not a perfect system yet.
Thomas Silvera, MSHS-PH, CST:It's it's not. And it's unfortunate that that was one of the things we learned when we were actually, you know, Elijah's mother at the time, even in her grief, like she was like, it was. Hard to see her go through that process. You know, everyone holds grief differently, but at the same time, watching her in her, her grief, just look to find like what is the missing piece When it came to childcare centers, not just the educational aspects and understanding, there was no legislation that actually put policy in place to mandate it, especially in New York. And when we noticed that she went in, did the research, we worked with her, we then we moved forward to work with local legislators to pass that mandate in 2019 September. And that changed how we looked at things on a grander scale state by state. So we is like, okay, what to do next. You know, we know that what we're doing with Elijah's name is gonna live in these laws. You know, us as we pass the laws in New York, Illinois, California, Maryland, Arkansas, Kansas City, we have components in, uh, law in Connecticut. Those things will shape how we look at childcare going forward. And then we worked with, um, AFA in literally creating a toolkit that we both did the research on and found the gaps in 50 states all across the United States. So what we do with Elijah's Law, we go in, we work with legislators to close those gaps. 'cause some states we have nine components. Some states have none. Some states have four, some have seven. But we go in with Elijah's Law to close the gap to make sure we can keep children safe and give parents peace of mind. You know, parents, when they drop off their kid, they want to fill that sense of security because we are expecting these educators to give them the same care as we would as parents. Whether you have food allergies, asthma, or any disability, we are dropping off our kids to put them In a safe place. But sometimes things fall to the crack where I. The communication is not missed between the parent and the educators or the centers. The centers are not understanding what they need to do, even though they are sure the parents, they're well equipped to do whatever it is to keep their child safe.
Amanda Whitehouse, PhD:Right. And you can't know what you don't know. Right. I'm sure, like you said, you had a plan in place at Elijah's school. He had a special meal. To not know and recognize the signs of anaphylaxis was one of those cracks in the system. It sounds like, even though you thought and they thought that all bases were covered.
Thomas Silvera, MSHS-PH, CST:It it's, it's one of those things, it's like you get that sign sealed deliver type thing. A parent, you know, cross their T's and dot their i's and leave their kid off and they go to work and they expecting everything is good and then they receive that phone call. That phone call is almost like that scene in a scary movie. When you hear that phone ring, I. It's, it's like that other end, you don't want to hear, especially if it's coming from your child's school and you know, your child has a severe allergy or deals with asthma on a day-to-day basis. And Elijah had both, he had food allergies and he had asthma and eczema, uh, on top of that. But with food allergies and asthma, it's, it's, it's a tick time bomb. So it's, it's hard to hear these stories. And I say, and I emphasize on that scary movie call because we've seen scary movies where that phone rings and it's like that person on the other line. And it's the fear, anxiety, that mental health that comes all, like encompass all its together and then it leaves you in shock, especially if you know that your child has been affected by something. At that center.
Amanda Whitehouse, PhD:Yeah. There's more I wanna talk about, about Elijah's law, but you are talking a lot about your experience as a parent. And I know your other son you've mentioned has food allergies as well. Yeah. You are doing this episode kind of around Father's Day to, to lend some voice to the fathers because I don't think we hear as much from you, so I appreciate you. So yeah, tell me more about that experience. You know, you mentioned just how it, it holds your heart, right?
Thomas Silvera, MSHS-PH, CST:Yeah. The daily reality of food allergy, especially as a parent and a dad. Um, living with children who have food allergy means like living in a constant state of vigilance. Like from every snack, every birthday party, every holiday, every school lunch, every restaurant menu, like every hand a child shakes or surface. Like it holds a risk. And I think, you know, that's the missing piece of people don't understand. So like after Elijah's death, like the weight just kind of like grew heavier. As I continued to raise my other son, Sebastian, you know, he lives with multiple food allergies and he's also on the autism spectrum as well. Um, he, he's so incredible and brilliant. Um, like this kid is amazing, but his journey comes with complexity because he must manage his food allergies restriction, his social anxieties and his sensory overload all at once. So we wanna make sure like these, you know, wherever he goes, every step he takes, that he understands about advocacy and being able to breathe and understand the complexity that comes with what his condition holds. So like watching, like my, watching him, you know, the same thing with Elijah when he was around. Like, it's like, is this safe for, for him? And he has to be like, is this safe for me? So before. Him eating anything or me seeing him eating anything is, is a painful reminder of how much our children are forced to grow up so quickly and he has to advocate for himself in school, even when he goes to the doctor in public spaces. Like have to show him how deeply, you know, certain things can be misunderstood and mis, you know, overlooked if he doesn't advocate for himself. Especially when it comes to food allergies. You know, kids, especially kids of color, and I, and I'll emphasize with that, um, and especially kids with disabilities, it's like, um, like food allergy parenting is not being overprotective. And that's one thing I think people think, oh no, you're doing too much. It's not, it's about lifesaving, it's advocacy from the moment they wake up in the mo in the morning to the moment they fall asleep and in all the emotional exhaustion because of. A possibility of one mistake can happen, a mislabel, a misinformed adult or child or restaurant or school change can change everything.
Amanda Whitehouse, PhD:Yeah. The stakes are too high for one. One mistake. Yeah. In the way.
Speaker 3:Yeah.
Amanda Whitehouse, PhD:with Sebastian, how do you balance that? Obviously wanting him to have a great life, recognizing for him his individual needs and the challenges that are on his plate, his protection and, and living life to the fullest. At the same time,
Thomas Silvera, MSHS-PH, CST:it's everyday conversations with him. It's about making sure he's advocating for himself, and I'm always having that reassuring conversation with him daily. Every time I'm with him or I talk to him on the phone and he's going to school, I was like, do you have your EpiPen? Yes, dad. What do you have for lunch today? Good. Don't share your food with anyone. Don't get, make sure no one offers you anything. If they do, what do you say? Do you know where your EpiPen is? You, do you understand how to use it? Are you okay with using your pen and EpiPen? So it's, it's constant conversation for him to be strong at advocating for himself. Even when we go out to grocery shopping, he loves reading labels and I'm, I love that he always looks for his, what he may, if his allergens are in those labels. And if it hasn't made contained, he knows not, we're not getting that. So, and that's what said, made in, made in facility or may contain. He knows not to get that because those labels, they right there, that implies risk and he doesn't want to take that risk of that chance. And, um, he had, he had an incident like a couple years ago when something had stated that it was okay, we come to find out there was actually dairy in that product. That we had to reach out to the company and tell 'em, Hey, they found out there was dairy in that product. And that was, we are not the first parent parent that has happened to, and it was crazy, but we're not the only ones affected by that. But being vigilant with Sebastian, Sebastian being vigilant and advocating for himself and keeping him strong, and for him to move forward, he's going into, um, high school soon. He's in middle school, so that holds a lot of risk, but I'm so grateful that he knows how to advocate and mitigate his risk.
Amanda Whitehouse, PhD:And that's from all of that work that you have done teaching and repetition and practice and modeling. I am curious about your perspective because from the people that I work with and people that I talk to a lot, often one of the things that comes up in households is a difference between moms and dads of how to handle this and how careful to be. I think there's a lot of moms who are gonna be listening to this episode and sharing with their spouses or their co-parents, and I'm curious what you would say to them, obviously, having lived through the worst case scenario as a father, what would you tell them?
Thomas Silvera, MSHS-PH, CST:You know, it's like, as a father, there was one thing, um, Elijah and Sebastian's mom that we communicated with each other. We went to the doctor's appointment, we went to the allergist, we made sure we read every label. And this is before we knew that there were any organization that existed. Like, you know, we post over social media. We never highlighted our children's allergy via social media. These were things that were personal to us, but the communication has to be met. The doctor appointments both have to be there present so you can understand the severity of food allergic conditions, um, and have those conversations. That's like, I, I can't give like the perspective of one parent to another because I've heard from both. Like, I heard a father say that the mom doesn't understand. I've heard, uh, a mom say that the father, you know, the father doesn't understand. It's like, you know, back and forth, but it's all about communicating and understanding that your child's life could be at risk. It's just if your child is allergic to peanuts, I be like, ah, you know. He's not that allergic. You can keep the penis there, but the severity of that is like you uphold the risk if you allow that. And then if you keep allowing it to happen, then there's the complacency that happens where you're just gonna allow it anywhere you go. And then when tragedy strikes, then you have to sit up and be like, oh my God, the last thing you wanna do is take the blame for something happening. Especially as a parent that holds heavy and it lasts and it affects you mentally. So communication with both parents have to be strongly met and understanding that child's condition and the severity of keeping their child safe, you know, I wish we can go deep into that, but me, on a academia level, that's not my space of expertise, that's where they, they have to build up the understanding with their primary care physician, their allergist or their counselors, um, to understand how to be vigilant and manage their child's, um, health throughout their life. Yeah.
Amanda Whitehouse, PhD:You're right, either parent, any parent who's feeling like this isn't equally balanced, or we're not seeing this from the same perspective.
Thomas Silvera, MSHS-PH, CST:Yeah. It's, and that's the thing, the equal perspective you want, you know, like I've had family in my life that with within, um, that some of them did not understand. Like they thought that removing the cheese from a pizza, it's fine that it will remove the risk of the dairy allergy, but people don't understand like things are baked in and that causes an allergic reaction,
Speaker 3:right? So
Thomas Silvera, MSHS-PH, CST:it's like the constant education and education and education where it took that incident that, and it's a true incident that I. My son had allergic reaction. 'cause that that family member thought by removing the cheese will be fine going to the emergency room. And now they're like, they're stuck with that guilt for the rest of their life. And that's what I don't want to happen with a couple. Mm-hmm. That, that miscommunication and someone being too complacent and thinking that it's not even in the cultural aspects of that, sometimes culture plays a big part of that. Food is culture, food is love, food is warmth, food is home. But when you understand that there's a child or a person or individual that has a food allergy, they have to take that seriously and not let culture or community or whatever try to negate that.
Amanda Whitehouse, PhD:I think that touches on what we were talking about at the beginning in terms of people who aren't the parents managing and living it, accepting these misconceptions that are pretty common in society of the severity or how easy it is to avoid or Right. Like the people are being overly dramatic. And I think then the people in our real lives, that's an example of how they exhibit that in their interactions with us. And it's misinformation, unfortunately.
Thomas Silvera, MSHS-PH, CST:Yeah. It, it is misinformation. Unfortunate.
Amanda Whitehouse, PhD:So let's go back to another thing you touched on that I know we really wanted to talk to about today, which is multiple ways, in multiple, facets, racial, differences in diagnosis, frequency of diagnosis, access to medications, access to treatments. There's a lot of problems in terms of, inequities within the food allergy world.
Thomas Silvera, MSHS-PH, CST:Oh my God. It's, it's huge. I, I remember like I'm about to be 50 years old. I remember growing up in the late seventies and eighties being an asthmatic and how the racial inequities were there for me being an asthmatic before I was you known to have food allergies. Mm-hmm. And the access of care. So we're we talking about racial in inequities and asthma and allergy care, especially in public healthcare, there's a failure there. Unfortunately, you know, we cannot talk about like food allergies and asthma without confronting those disparities. Like black children, Hispanics are more likely to suffer from asthma and food allergies. They're more likely to be hospitalized with these severe reaction. They're less likely to be diagnosed early or given any access to epinephrine or any resource or information to manage that, and more likely to be misjudged or dismissed in emergency. If there are reports from, if you look at reports from back when there were so many children. In these, um, underserved communities, especially black Hispanic communities that had issues that they are just mostly diagnosed as gastrointestinal issues, food poison, and some people have passed. But I, it's one of those things that it's mind boggling for me. It's like, could that have been an underlying issue at that time with an allergic reaction? But that information is not privy to the community. It's easy to just be misdiagnosed or dismissed in those communities. So these are not just like isolated information I'm trying to convey. And, and I know there's data that puts that out there, but they are systemic failures that are rooted in decades of medical biases on representations and research, unequal healthcare access and cultural gaps that kind of like it, it's cultural gaps in provider training. So, and then I think we're strongly working on those narratives right now, especially Dr. Gupta and other people are working strongly to, to present that. In their research. But I think the research has to be in the grass rooted efforts. You know, I love data in, its in its entirety. It's, it's amazing, but it has to be delve right into the community. And there's more we need to bring to these underserved communities where not just throwing money to research, but, or just throwing money, money into a community and say, Hey, I did my part. The grassroots effort needs to be solely embedded, literally boots to the ground in the community in order to change that narrative. When it comes to the systemic failures and those, um, racial biases, we need to kind of like go against that and push through it so we can actually see it and see it for what it is opposed. 'cause we can go through data and data and data, data and point out all the racial discrepancies, the systemic failures and everyth the data proves that all to us. It's historically there, but we need to be more boost to the ground with that. So. When we look at the unrepresented in research and the, on the, when it comes to the healthcare as well, it's like we're still missing the mark. You know, it's like, I know we've worked with families like, who couldn't afford an EpiPen, or families who concern or, or downplay or their, their information, their, their health issues are downplayed in the er. It's like, it's like, why should that happen? Like children who are treated as burdens in classroom because of their conditions is baffling. You know, rather than protecting them, they're more dismissive and not really understanding that, and that's why so many children fall through the crack in these, in these unrepresented areas. And that's why with, when it comes to e largest law, it matters. It mandates algae preparedness and childcare centers and early education and so forth. But like we have to go further to address food insecurity, to improve medical training, to increase research participation among the bipoc community, and also invest in community level health education. We say that, we say it in its entirety to be blue in the face, but allergy care is not a privilege. It's it's, it is a right and, and no child or any individual should suffer more because the zip code they live in or in, or the color of their skin matters. It should just be a right to be healthy and a right to survive.
Amanda Whitehouse, PhD:Absolutely. Absolutely. And it's, I, you know, there's, I, I can feel my stomach clench when you say that about, you know, kids not having access to epinephrine. It's just the worst thing that you can think of. It's such a inexpensive, basic, been around forever medication to, to think of people not having access and having it in their hands is just a tragedy. It's awful.
Thomas Silvera, MSHS-PH, CST:I, it is awful. I've done community events where parents were like, yeah, I have three kids with food allergies, and this was lower east side of Manhattan. A mom came up to me and was like, I have three kids with food allergies. I could only afford one set of EpiPens. One is in the school and one she carries. But the ethical dilemma is what if three, two of two outta your three children have an allergic reaction when you're with them? You have one EpiPen.
Speaker 3:Mm-hmm. That
Thomas Silvera, MSHS-PH, CST:is the ethical dilemma. What do you do?
Speaker 3:Mm-hmm. What
Thomas Silvera, MSHS-PH, CST:do you do? Because both are equally suffering, both from anaphylaxis. Do you save one and wait for 9 1 1 to save the other? That's, that's the worry that concerns me every day. And that's why it's like, it's, it's crazy because we need these gaps in epinephrine clause or have them where it could be purchased over the counter or so forth. There needs to be better healthcare access when it comes to pharmaceutical access for epinephrine and affordable affordability. When it comes to that. I know we, we have price gaps that's been gapping Epic pen to a hundred, a hundred dollars or so forth, but we need to do better in that space and that's why policy, great policy when it comes to health saves lives.
Amanda Whitehouse, PhD:Yeah. And that, it speaks to, the idea of having stock epi, right? Having stock epinephrine in schools, in venues, in public places as well. Mm-hmm. In case of emergencies, in case someone doesn't have their own And of course people who are undiagnosed because food allergies can be diagnosed at any time. But that seems like such a big piece of the puzzle too.
Thomas Silvera, MSHS-PH, CST:Yeah. It's one of the big pieces of the puzzle, especially right now. There's so many adults when they go out to eat, having these undiagnosed, uh, food allergic reactions. And it was like, so you can come to restaurant space if you go, you, you go to a place that dine safely and then all of a sudden you have a allergic reaction. That's something you just ate a week ago and the restaurant is not stocked with all designated stock epinephrine. Now you gotta wait for 9 1 1 and even with young children. You have from zero to four of the most vulnerable and they have their first reactions in childcare centers unbeknownst to the parent and the educators. So having those un-designated stock app efforts accessible, saves lives.
Amanda Whitehouse, PhD:Absolutely. Are there other organizations, in addition to Elijah-Alavi Foundation, other groups that you want us to know about who are doing this work specifically to address these inequities that we can support?
Thomas Silvera, MSHS-PH, CST:So I know afa, AFA is really good about doing that. Um, AF a kids with food allergies, asthma Allergy Network. Um, we AIR is another organization that's doing the work. Um, Farrah has been doing the work, uh, my organization, let's see, um, the Allison Rose Foundation, the Natalie Georgie Foundation. I can go on. And, and that's, that's one of the important things that's like, and it's good. It's like, I think one thing when it comes to legislation, we miss the mark and I, hopefully not everybody does, but I think when we pass a list legislation, it's a big win for everybody. But what we don't, what we need to pay more focus to is like when the law gets enacted and how everything starts to transpire from that. So once the public health departments or any entity involved in creating those policies, we have to constantly continue following through. Then make sure that they're literally in line of making sure they're pushing the agenda of that law. And we are, we, within our organization, we do that. I am tirelessly every day calling states, calling departments, making sure that they're in compliance with Elijah's law because we don't want another tragedy, like what happens to our family, happens to another family or any individual in general. So making sure that these states are in compliance with these laws holds truth, and it sets precedence of how they do things. That's what, that's what we need to look at when it comes to passing the legislation. It's great to see, it's a big win for the Food Edge community, but we have to stay on top of the states to make sure they're in compliance.
Amanda Whitehouse, PhD:That's a good point. Thank you. I obviously you have so much more insight into how this works than we do. If we can pass a law, but if it's not enforced, if it's not followed through on and people aren't held accountable, sometimes things can slip through the cracks, right?
Speaker 3:Mm-hmm.
Amanda Whitehouse, PhD:So let's talk about,. How many states has Elijah's law been passed in so far?
Thomas Silvera, MSHS-PH, CST:Oh, um, um, as you can see behind me, I have like seven.
Speaker 3:I see all your posters. Yeah. So
Thomas Silvera, MSHS-PH, CST:currently we have official six laws passed in, um, for Elijah Law, which is New York, Illinois, Virginia. Maryland, California, Arkansas was just the most, uh, recent one that was signed into law in April. And, um, we also have, uh, Kansas City Ordinance in Missouri specifically for Elijah's Law. On that level, you know, We had a bill in Missouri, and it was, Elijah's law was part of a big robust bill, a health bill, but the Elijah Law was a strong part of that bill. But other components that had, there was like a bunch of bills all together that they were trying to pass at once. The bill, it passed a house in the Senate, but there was a lot of back and forth with the House and Senate on agreement of not Elijah's Law, but other bills. So it created a standstill and then it, it, it wasn't able to go to the governor's desk, but we're reintroducing that in December and we're very optimistic of that moving forward. There's a, in North Carolina there's a bill there that is specifically for childcare because the representative there had, she had reached out to me to move the bill. She moved the bill before I knew about it. But we've been in talks about working on fixing the bill and moving it. I don't think it's gonna pass this session, but more likely we'll have North Carolina, so we're talking about maybe five, six bills in 2026. We're in talks with Florida, Texas for 2026. We currently have Pennsylvania. We've had our, uh, meeting with AAFA. Amazing, amazing organization doing such amazing things. And their support for what we've been doing has been tremendous. And we, we had our children, I think our youth and health committee meeting on the 7th of May, which was very heartfelt. And, and they really took to the personal connection and the personal story of what I shared and what AAFA has shared, you know, and I think that's, that's what it is, is that we have to give them that human connection of why such legislations like Elijah's Law need to exist in states. And under Elijah law, New York State has saved four lives, and maybe even more so, it saved three kids and also an educator that didn't know they had a food allergy. Because the access to the undesignated stock epinephrine. So that's, I say, good policies can save lives, especially when it comes to health.
Amanda Whitehouse, PhD:Absolutely. That's amazing. And I've heard your voice lended to many other causes and laws that are in the works or being discussed. You've been vocal about Addie's Law in California. Do you wanna talk about that one at all
Thomas Silvera, MSHS-PH, CST:Yeah, so Addie's Law, it's, it's, I think it's one thing that we all looked at as a bill that, again, it's a bill that can save lives that can actually give people peace of mind when they dine out safely. We look at SB 68 as a bill to, to kind of like push the agenda and the narrative of what we need to do in restaurant when it comes to menu labeling. You know, that Bill wants those top nine labels to be in there to give people peace of mind when they go in and they look for what they want to eat and notice, okay, this has this type of allergen, this has this type of like, I think it's a great bill pushing, you know, to move forward and they're doing a t amazing work in getting so many supporters on top of this bill. And you know, I'm very optimistic of the outcome of it. And, and I would love to see that a bill like this in every state, you know, and having, you know, California as one of the big states to see that, you know, if that bill can pass, then that shapes how everything can be done in every other state going forward. I know Pennsylvania has a similar law. New York state has a similar law that they're moving through their pipeline as well. Other states are doing the same thing. I'm gonna push, you know, Addie's bill because I believe in that bill.
Speaker 3:Yeah.
Thomas Silvera, MSHS-PH, CST:And California is a very hard state to pass a bill 'cause. Second time around with Elijah's law, you know, and it wasn't because the bill was bad, is that when you have these entities and unions not agreeing, and even if it passes the House and Senate and there's still no agreement, the governor can quickly veto the bill until there's an actual understanding where you can move the bill the second time around with no, um, opposition. Right. I pray that this bill moves forward and it's, again, it will show like, okay, we can start doing other things like this in other states. The Adina Act, which is also, um, labeling for pharmaceuticals. So, because. And Seth, who's been working that with his daughter, Adina It's a federal legislation, it's not a state legislation, so you're dealing with a lot of congressional leaders to see if they can get a lot of support to move that bill. And I'm optimistic that hopefully that the bill will move forward and eventually we'll go through as a federal piece of legislation. Um, but again, it's a food labeling bill. So you have a community that's like, wait, what happened? You don't want this, but you want that. So you have the, the back and forth. And again, it's like, you know, we as society, this is how things happen. Mm-hmm. You know, you um, it's like, what is that? It's like you take the good, you take the bad, take the bad, and you take 'em both. And that you have, it's like the facts of life. Absolutely. That whole
Speaker 3:thing.
Thomas Silvera, MSHS-PH, CST:And it's like, and that's how I see it, you know, I was like, it's the facts of life, but we have to understand the political aspects and all that, that is kind of like troubled in that and try to dissect it to make sense. And, and I love to sit in that neutral part because I use my mind so much on a day-to-day basis. Especially I'm in school doing my doctorates and I do a lot of research, so I'm constantly like reading and dissecting things, so, yeah.
Amanda Whitehouse, PhD:You have, I think, in a very positive and productive way, talked about your own mental health and the impact of going way back, your lifetime of chronic illness and how that has impacted you along with your parenting experiences. Are you comfortable talking about that a little bit?
Thomas Silvera, MSHS-PH, CST:Oh yeah. I'm absolutely, um, as you know, beyond my road as a father and advocate, like I'm also a patient, you know, I, I live with severe food allergy as my chronic spontaneous urticaria. I don't know if anyone know that I have that. And also what people may not know, I also suffer from a traumatic brain injury a couple years ago, which was, uh, created, uh, what they call shearing or accidental trauma. Um, I live with these conditions, but it doesn't define me, but they do shape my everyday life, you know, so. Especially when it comes to CSU chronic spontaneous uticaria which is triggered by my stress and everyday environment change. It can flare up with me without warning. And, but I do try to battle that with my antihistamines, whatever I have. My asthma was complicated a lot, you know, trying to have a control of that. And then finally I got a medication, um, that actually started to control that. And I don't use my rescue inhaler as much, thank goodness. Um, which is, is greater and like, and further when it comes to the brain injury. I still suffered the concussion back in 2022, which delayed a lot of my work, a lot of my school schooling, and I'm, I love the school that I'm at, the understanding of my condition and allow me to pace myself throughout. I would've been done probably in like early 20, 24, but still I have, you know, I'm hoping to be done by the end of this year. So it has impacted my, you know, my academic path. It also, you know, messed with my mental health and also clarity. But again, despite the challenges, I show up because I know what, what's at stake. And living with these chronic illness has taught me like, not just like what happened to my son, but how broken the system can be because I've experienced being overlooked because of some of my conditions growing up and even to this day. And that's why I continue that I have to advocate for myself in exam rooms. So let them know like, Hey, these, like, you don't see it, but I'm dealing with it. And I think that's that disconnect as well. And I've seen how, especially when it comes to voices of men, especially black men are too often dismissed when we express pain or vulner vulnerability or emotion. And that's one of the things that kind of like matter when I tell my story, I do this on a day-to-day basis, but I know the, that's a bigger mission, that's bigger than me that I need, I need to push forward. So like. You know, when it comes to myself, I know my health matters. Our health matters and we deserve a system to listen and treat us and uplift us, rather than pathologize.
Amanda Whitehouse, PhD:Mm-hmm.
Thomas Silvera, MSHS-PH, CST:Or ignore us.
Amanda Whitehouse, PhD:Right. One extreme or the other, rather than Correct. Somewhere in the middle, which is, yeah. Accurate. Yeah. Yeah. Well, and for a lot of reasons you are such a powerful example because, it starts with what you said, lessons that are learned and internalized about. I, I don't speak up about this. I'm not supposed to be vulnerable. I'm not supposed to talk about these things, or, or that they're a weakness, these negative perceptions, and it's, it's just not true. It's, it's a strength to be able to express it and acknowledge it and seek support and help or take care of yourself as needed. You spoke about taking a break from your doctoral program. I saw somewhere that you posted that and I was thinking what a great example of acknowledging what state you're in, what your limits are, what your needs are, and taking steps to care for yourself.
Thomas Silvera, MSHS-PH, CST:Yeah, and that's one of the points that I, I, I wanna highlight because I even reach out to people on social media because I know a lot of people, we show up and we wanna show that, you know, that fun side of us, the excitement of life. But, and then there are a lot of us that deal with the pain. And I was talking to someone, I was like. We're so much outside of these tornadoes and hurricanes, right? And we are looking at all the trouble that can bring from looking at those, those thick thunderous storms or, you know, weather conditions. But we have to look past it and past the tornado. And past the hurricane are the eyes of the storms, the eye of a tornado. Once you stand in, you get to see everything clearly. And then if we look at everything that's there that's creating that tornado, that storm, we can probably dissect it by working with support systems to kind of like get us out from that eye of the storm to kind of like remove it where, you know, there's sunny skies and there's ways that we can move in life forward, feeling a little bit better about what's going on and, and that's kind of like how I see things. It's like I've been in the storm many of times and then like now I finally found my path where I can actually see a little bit clearly. And that's why I keep pushing even in certain mindsets or conditions since I've been in. Because again, this path I didn't choose it, it chose me. Like I never foresaw myself even thinking about receiving it or obtaining a doctor's degree in this point in my life, that wasn't the outlook, but there was a shift when my son had passed that changed the whole perspective of what I wanted to do in life.
Amanda Whitehouse, PhD:Yeah, I imagine that would change everything, an experience like
Thomas Silvera, MSHS-PH, CST:that.
Amanda Whitehouse, PhD:Um, I wanna ask you a little bit more about your goals with your, future career and, and your training once you finish. But I wanna pause on, another really powerful piece I'm looking at you on the screen now. You look like such a strong, healthy, well person. Back to the community, not understanding the general community beyond food allergies, not seeing it, you being invisible in terms of your needs and your, your health. Mm-hmm.
Thomas Silvera, MSHS-PH, CST:Yeah. It's, you know, I get it all the time, and it was like, but you look fine. I look fine. But internally, it's, it's, it's, I'm working with a system, with an internal system that I don't want to fail me. Mm-hmm. So I have to keep working on that to keeping myself healthy, both physically, spiritually, and mentally. And, and that's where I want to portray out when I do my talk. So anyone that I meet is to embody the positivity and give them that same strength that I exude out as well. Because it's like, I don't let, what bothers me to define my next steps. Because if I allow that, then I'll be stagnant and then I won't move the agenda or what I need to do, especially when it comes to, like me finishing my degree or whatever it is I need to do. I, I don't wanna miss a step and I want to keep pushing forward.
Amanda Whitehouse, PhD:Can you talk a little bit for the listeners, what it actually looks like day to day for you managing your mental health and, and achieving wellness or getting back to it after a tough stretch?
Thomas Silvera, MSHS-PH, CST:Oh man. It was like, you know, it's more importantly, it's definitely seeking out, uh, someone to talk to you. You gotta have a strong support group, whether it's your, your wife, your brother, your sister, a therapist, um, a support group that you can go to, whether it's online or in person. Um, and waking up every day to prove yourself, um, to prove that you can take that first step forward every day. Because it was hard in the very beginning after I lost my son is like, trying to get up and it's like, do I wanna put my foot down on the floor to move the day? There's some days I didn't wanna move the day, I just wanted to just stay in bed and, and just kind of like grovel and watch TV and just stay there. But I knew, like even with Sebastian and Eli's Elijah's, uh, mom at the time, I had to move because she wasn't moving. So I had to do it for both of us.
Speaker 3:Mm-hmm.
Thomas Silvera, MSHS-PH, CST:You know, until she got better to start moving for herself as well. You know, and although we're not together anymore, we work strongly together. We are great friends and great co-parents, and we run this foundation the same way. We run it from the very beginning with love. We're passion and heart. And that takes a lot, especially going through the mental health aspects of life. You know, I have to deal with that on a day-to-day basis. So it's like me taking, you know, doing my, um, doing my meditations, making sure that I I I time manage everything that nothing gets kind of like bombarded and confusing where it creates a stressor for me. Try and I try to eliminate as much stress for my life that it doesn't cause me to be in a rut. And, um, it's, it's a big mental hub going for a walk every day. I try to do at least about 30 minutes to an hour walk. Enough where I can clear my, clear my mind and I love baking. Baking has been one of the biggest thing that helps me with my mental health 'cause it's, it's literally, it's like it takes you away from focusing on everything and it focuses you just on the signs of baking and I love that. So there's a lot to go into mental health, but using some of those tools can help. And more importantly, it's having an amazing support system that understands you and it allows you to have that space when you need it, but also you allow them to reach out when it's time. And that's what I, I, I kind of like deal with on a day to day.
Amanda Whitehouse, PhD:Yeah. Thank you for sharing that. There's one thing I've heard you mention before that I got really excited about when I was listening to you 'cause it's my big thing. Um, nervous system health and vagus nerve regulation. I heard you talk about using like binaural beats and stuff. Is that something you work in regularly too?
Thomas Silvera, MSHS-PH, CST:So I do, I use binaural beats, I use binaural beats. I use, uh, different hertz as. Um, as a calming mechanism for my anxiety, my stressors. And, and here's a funny thing. So what people probably don't know, I'm a big fan of Seinfeld and I was a big fan, and my son, when my son passed away, Seinfeld was like my outlet to kind of like just take away my day-to-day, uh, of just thinking about what's going on. And I use that on a day-to-day. And then I realized I've been using Seinfeld and everything I do that create, that may create a stressor to kind of like drown out my, that background noise and Seinfeld, because of the, the comedy that it has. It's, it's funny, it's comedic. Not a lot of people understand it, but it's, it's almost like a, it's a good piece for me. So on top of like using the binaural, the, the binaural beats and everything, those create such an amazing environment for my house. There's times that I have it where it starts to play in the morning when I wake up. And I have like the, um, the singing bowls that also play. So the Tibetan Bowl sounds and everything, all these things creates that environment to kind of like clear your energy in the space. What allows you to walk like freely in a sense. And then you have that sense of peace and um, you know, and I allow outlets like that to be my piece, but definitely the binaural beats and everything and listening to the different bol sounds, the megahertz. There is a song, and I can't remember the name of it, I think it's called Weightless. Within that song, it actually, the beats in that song lines up with your heart rhythm. And then it allows you, if you're having anxiety, you can use that to kind of like help combat the anxiety where everything kind of like gets regulated almost like what biofeedback, if you're familiar with biofeedback, is, you know, using that mind, um, mind therapy trick and everything to kind of like regulate your body system. Yeah. And that kind of like, I believe help regulates your vagus system, you know, helps you with that to feel more at ease. And I try to look at more vagus therapies to help me with that.
Amanda Whitehouse, PhD:I, I do lots of different, um, biofeedback techniques with my clients, but there's one program that I'm obsessed with, it's called the Safe and Sound Protocol. Hmm. And it's a, it's a vagus nerve stimulating program that's a music program and Oh wow. It's a vagus nerve regulation based on beats and rhythms because we, we grow in the womb, right? Correct. The first sound of safety we have is the heartbeat. So that's going back to that song you talked about, it's so powerful. There's so much to it. It
Thomas Silvera, MSHS-PH, CST:is, it is. There were a time I was in Costco and, and anxiety can strike anytime.
Speaker 3:Mm-hmm.
Thomas Silvera, MSHS-PH, CST:And I was walking, literally just shopping for the holidays. And then I started feeling anxiety just build and immediately I can feel my heart race feeling the, the, the anxiety peak and a panic about to set in. And I literally went to that song and I sat down in the pharmacy area and I went to the pharmacist, do you mind if I sit here? I just need to relax a little bit. I put that in and I just closed my eyes and just breathe, did my breathing exercise and everything. And like within like a couple minutes I was feeling so much better. I feel my heart, you know, back to normal. Everything was like regulated and I was like, whew. You know, it's, it's those things that you want to understand and learn what you can do to help you in times of needs like that.
Amanda Whitehouse, PhD:Yeah. Thank you for sharing all that. I think it's really powerful for people to hear and it's a great example of, like I said, you knowing when you need it and then taking the time to do that. It wasn't a huge inconvenience or or weird thing that you did just to sit somewhere in the store quietly for a minute and do what you needed to do to take care of yourself. Yeah,
Thomas Silvera, MSHS-PH, CST:absolutely man. No, absolutely.
Amanda Whitehouse, PhD:So moving forward, you know, you're working on your degree, obviously you have big plans with the foundation. Tell us what your goals are and what, what's next for you and for Elijah-Alavi Foundation.
Thomas Silvera, MSHS-PH, CST:So, I know like, you know, with, with the Elijah-Alavi Foundation, you know, it's like, it's a, it's a call to action from loss. Uh, and what we are trying to aspire is to grow the foundation and the bigger platform, you know, where we can be able to move. We consider ourself a small but mighty national organization. 'cause we've done a lot and we always grateful and supportive of the, the community, both food allergy and, and not, and those who don't have food allergies, you know, from our friends and family across the globe has been so supportive. You know, Eli, we know that Elijah's life was cut short, but his impact is eternal and, you know, he didn't get to grow up. You know, he would've been 11, uh, as we speak. But through his story and, and countless children they have the chance to do just that is to live. I wanted to walk a path that he could have been walking in had, he would still be around. So, and that's why I am where I'm at today, is because I wanted to provide that path that was taken from him and receive that document and also show my other son Sebastian, hey, even throughout struggles, we still can forge through that and be impactful and, and make that way even in our struggles, we can still be, be able to accomplish the things we are set out to do. our mission is not just about food allergies, it's about having health justice. It's about health equity, it's about honoring. The pains of those who have been lost through the system due to food allergies. You know, that's why we're doing what we're doing is transforming pain into purpose we don't receive funding like all these other organizations. We don't, you know, we, some, we run off the, the bootstraps, you know, you know, it was like, it's like two matches together. Okay, we can, we can do this, but we, we, we utilize our platform and our, and our voices to create a bigger impact. And, and we want to grow this to a level where we can have more people join, where we can dive into the perspective of a patient perspective from the patient's voice when it comes to, um, going into research. You know, working on more policies and building into a federal leg legislation, working on a national spot where we can bring childcare education, which we've been working on with a multitude of organizations from kaleo, AAFA, um, FAACT, kids with food allergies, Ruchi Gupta's CFAAR, like, there's so many of us that are on family members of this collaborative, and we are building that. So slowly we see the organization growing, but we want to build it on a bigger platform where we can be able to raise enough funding, where we can actually bring more people in to do the work, to make a bigger impact. W e would love to build on what we're doing on a stronger foundation.
Amanda Whitehouse, PhD:Thank you. I know everyone listening will be just like me. I'm tearing up as I'm sitting here listening to you talk about walking that path for your son that was taken away from him. And we want to support you and help you. I'm sure we can donate to the foundation and, and get involved in other ways. So please let everybody know how to do that.
Thomas Silvera, MSHS-PH, CST:So, you know, as we move forward, I, I say, I ask if you're a healthcare provider, listen more deeply if you're a policy maker, right? And pass legislation that protect the most vulnerable community. If you're a parent and caregiver, never stop advocating. And if you're someone who's never been affected, learn and stand with us, because at the end, this isn't just about Elijah, it's about every child, every family, every voice that deserves to be heard. Respected and protected. And if they want to support what we do, they can go to our website, um, Elijah-Alavi foundation.org to support and or just, you know, get information about us and, and advocate for us as well. And just thank you for allowing me to speak on this platform to share my story both about Elijah and my personal story as well.
Amanda Whitehouse, PhD:Thank you for sharing it with us, and thank you for all of the work that you are doing that's protecting my son and all of the other kids and the grownups out there making it safer for everybody who's living with allergies and asthma. We appreciate what you do.
Thomas Silvera, MSHS-PH, CST:I appreciate all the accolades, but I'm very grateful for the food allergy community. Like 1000000%. They've been the most amazing supporters, like for what we've been doing since day one. No, thank you. I appreciate you.
Speaker:let this Father's Day be more than a celebration. Let's honor Elijah-Alavi by making our community safer, kinder, and more allergy aware in the ways that we can. So as always, here are your three action steps that you can take Number one, support the Elijah-Alavi Foundation in any way that you're able to share Elijah's story. Donate to them if you're able to, and help them continue to ensure that early childhood centers are adequately trained to keep children safe. Number two, speak up about how people discuss and represent the food allergy community. Whether this is in the media or in everyday conversations. We've all heard it happen and sometimes it is difficult to go against the flow or try to be serious when everyone else is being funny, but it's important for us to call out the insensitive jokes and tropes that continue and ask people to stop mocking food allergies Number three. If there are any kids in your life with food allergies, please buy them a copy of Thomas's book, the Anaphylaxis Strike. It's a colorful, fun graphic novel, we have it in our house. It's great. I'm going to be doing a giveaway of a copy of his book to make up for the fact that I didn't even save time in the interview to ask him about it. So. To enter the giveaway, you can find me on the contact page of my website, the food allergy and let me know that you'd like to be entered or follow me on Instagram at the food allergy psychologist.com and send me a message there. 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 White house. Thanks for joining me. And until we chat again, remember don't feed the fear.
