Navigating Anxiety in Food Allergy Parenting Today

00:00:00

Liz Voyles

Hi, everyone, thank you for logging on. We're just going to wait a couple of minutes because we have a lot of people who are entering the webinar right now. So just hang tight and we will get started in just a moment. If you're just joining us, we have a few more people who are entering the webinar right now and we'll get started in just a minute. Ok, I think we'll start. Good afternoon, everyone, and welcome to the Backstop webinar, Omicron to epinephrine navigating anxiety in food allergy parenting today, which is presented with Red Sneakers for Oakley. I'm Liz Boyles, director of partnerships at Backstop and the mother of a tween with severe food allergies. For those of you who are unfamiliar, Backstop is a one stop shop, virtual care solution and app for parents with children who have food allergies. We believe that confident, well-informed parents make safer kids, and we have blogs, webinars and a whole online community to help you feel like you have backup. You can sign up for private coaching sessions or our new support huddles, where parents navigating pediatric food allergies meet in small groups with a licensed professional to explore their challenges and the rewards of small wins. You can find out more about how we simplify the lives of allergy families and download the Free Backstop app at getbackstop.com! We want to welcome those of you who are joining us from Red Sneakers for Oakley this afternoon. And now I'll hand the mic over to my friend and colleague Andy Smith from Red Sneakers. Hi, everyone, I'm Annie Smith, and I am the social media and website manager for Red Sneakers for Oakley. I want to welcome everyone here from the Red Sneakers community, as well as those who are just learning about Red Sneakers and Backstop for the first time.

00:02:45

Annie Smith

For those of you who are unfamiliar, Red Sneakers for Oakley is a non-profit dedicated to educating and advocating for food allergy awareness. And if you'd like to learn more, I invite you to visit us at RedSneakers.org and to follow us on Facebook and Instagram at Red Sneakers for Oakley. I want to thank Backstop, who is an incredibly valuable partner in this work, for creating a safe space to explore these issues together, and I will now turn it back over to Liz to introduce today's expert. Thank you, Annie. Today, we'll hear from Dr. Shelly Flais, Dr. Flais is a practicing pediatrician in the Chicago area and an American Academy of Pediatrics, national spokesperson and an author of several A&P parenting books. She's also an assistant professor of pediatrics at Northwestern University's Feinberg School of Medicine and is a mom to four teenagers, two of whom have lifelong severe food allergies. Dr. Flais will walk through some of the issues that she's seeing now amongst food allergy families in her pediatric practice, and we'll give you all some tips on how to navigate sticky food allergy issues in your everyday life. Then we'll start the Q&A where Dr. Flais can answer your questions. You can ask your question at any time during the presentation. Just use the Q&A box, and then I will read it out loud to Dr.Flais . If you'd like, you can upvote questions that people ask that you think should be prioritized. Thanks for joining us, Dr. Flais.

Dr. Shelly Flais

Absolutely. Thank you, everybody for joining us. This is an issue living with food allergies that's near and dear to my heart. It's what I work with in my professional pediatric practice, and I also live it. My oldest was diagnosed with a life threatening peanut allergy as a toddler. We probably would have found out sooner, but as you guys might know, medicine keeps changing in every 5-10 years. Our advice changes, and he's now in college at that time. If there was a family history of allergies, the suggestion was to wait to introduce peanut products, which is completely not the case. Now, now we do early introduction and we can talk about that. So I actually had given him eggs and he broke out in head to toe hives. And I am a doctor. I'm an MD. I'm fully trained in pediatrics at this point and I had a heart attack. There's nothing like seeing your child develop symptoms of this nature. And even though my brain knew what was happening we are  mama bears, first and foremost, and were parents, and so I've lived through this myself since then. Unfortunately, we've had some cross-contamination with his other food allergies requiring the use of auto injectable epinephrine, and I am so grateful to the existence of auto injectable epinephrine for keeping my kid alive. Bottom line. So I want to emphasize that I get it.

00:06:02

Dr. Shelly Flais

Not everyone does. I'm amazed and part of why I'm so happy to partner with Backstop and Red Sneakers for Oakley. We need more awareness. This is an issue that people need to learn more about, and it amazes me in my social circles and in my professional setting what a range of education there is out there. Whether it is being aware that food allergies are at epidemic proportions at this point, whether it's the appropriate way to deal with an allergic reaction, whether it's safe to have a family event where toddlers are present with food allergies and have Ebola not sitting out for on so many levels, there's a lack of education and food allergy. Living with food allergies is truly a lifestyle condition. It's a lifestyle medical condition. It's not ‘you take a medicine each day. It manages their symptoms. It's something that we have to think about all the time, whether it's reading labels in the grocery store, whether it's food prep at home, whether it's eating at a restaurant and how to manage how to identify and manage a life threatening allergy. So it's multifaceted and it's a lot to learn. And when you first learned that your child has this condition, I will admit I was a deer in the headlights and it's been a process. And looking back, I'm realizing the stages.

00:07:37

Dr. Shelly Flais

And so I use that technique in my clinical practice when dealing with families and helping them learn how to navigate this journey. It's a process, and there's a big difference also between your infant versus a preschooler going off for preschool experience for the first time, whether it's high schoolers, whether it's my oldest is in college, and that's a whole nother ball game. So it's a process that we also want to model positive attitudes for our children and educate them because ultimately we're raising future adults and ultimately it's our child's medical condition. So part of it is keeping our kids safe. Part of it is in a positive manner, helping working with our child so that they learn personal side note and something that we're going to talk about a lot today is the use of auto injectable epinephrine. I actually got a call. I was on call for my practice Monday night. A family this kid who was in junior high has had tuna before, has other food allergies but had a dish containing tuna and started to develop symptoms. And so the family was calling to see should they use their auto injectable epinephrine. You'll notice that I always use that term because there's different brand names, there's different generics that I just want to be as inclusive as possible.

00:08:59

Dr. Shelly Flais

And that child did need to use the EPI and call 9-1-1. And it made me reflect on one of my son's situations. He was in junior high. He started to develop symptoms. I looked at him and I said, Well, let's give an antihistamine. In that case, Zyrtec, which is satirizing infects, offending last longer, and watch, and he looked at me and he said, No, I need epi. He told me, and here I am, the doctor I'm supposed to know better. And it was a scary moment, but also a proud moment that he had come to a point in his journey where he knew to advocate for himself and speak up and take the appropriate action. And thank God because he's thriving and doing great. So, there's a lot to talk about here, but a couple other key things that we're going to talk about, and I want to make sure that I have plenty of time for everyone's questions because there's some good ones. The elephant in the room is the COVID pandemic, right? And we talked about how food allergies are a lifestyle medicine. Part of it is routines, and things happen when we fall out of routines. If you're doing the same thing every day, it's easy to say OK, we have this x y z. We have our food prepared, we have our epinephrine packed, but we have waves of al-Muqrin variants, for example, that gets us out of our routines.

00:10:18

Dr. Shelly Flais

And in a way, the shelter in place was easier because with remote school as families, we could better control what our children were exposed to. It made living with food allergies much easier. But unfortunately again, with the theme of raising future adults who are going to be navigating their own situation. As wonderful as it would be to keep our kids in a safe bubble forever, that's not reality. And part of it is baby steps to get in those routines. And so a key thing that I talk about with my families now is making sure that we get back in that routine of making sure we always have epi on us. That's a huge, huge thing. Something else that we're going to talk about is the use of epinephrine versus other things which are already kind of talked about. I'm just checking my notes here and then debriefing because again, in terms of empowering our children and ourselves, if you do need to have this experience and administer EPI, what next? How do you talk about it? What are some good things to do afterwards? so yeah, so we'll highlight on that. So, Liz, I was ready to jump into questions if that works for you guys.

00:11:32

Liz Voyles

That’s fabulous. Yes. So, first of all, thank you to everyone who has logged on, and so many of you asked really great questions when you registered for the webinar. So I'm going to read out some of those questions to the group we found, as we usually do when we bring groups of parents together who are struggling with some of the same issues that there are a lot of similar questions. So I'm going to bundle a few of them thematically as I ask them of Dr Flais. But you can also ask questions live on the webinar and I can read them out to Dr. Flais. So just a reminder to ask a question, please use the Q&A box. It makes it a little bit easier for us to keep track. And then I'll read your question to the group and Dr Flais. If you can't find that Q&A box, you're just going to hover your mouse over the menu at the bottom of the screen, select the Q&A and you can type in your question. Ok, so our first question from those that were asked on the registration page are there were a number of parents that are feeling anxiety around extended family gatherings. I think all of us coming right off of the holidays might have some of these fresh in our minds, and they're feeling like their families are not necessarily taking their concerns seriously. Do you have any advice, Dr Flais, on how to handle those situations and talk to family members who might not understand severe food allergies and really grasp what is required and how we can tell them in a direct way why it's really important to be careful when foods are involved?

00:13:27

Dr. Shelly Flais

Absolutely. And this is such a tricky area and we love our families, and I think that's part of what makes it so emotionally challenging because here we're dealing with a very serious issue. And the people who are supposed to understand and love us more than anything may not. And that can be very stressful. I have a lot of experience, unfortunately, in this area, and I found that among my patients in my practice and their families generationally, it could be an issue because when we look at the statistics, it's really the past 20, 30 years where food allergies have exploded and each classroom typically has two or three kids with a life threatening food allergy. This was not the case 30 years ago, 40 years ago. And so for depending on our generations, for grandparents, that's just really something for them to struggle understanding. They didn't know anybody with a peanut allergy growing up, for example, but then not even generationally extended family’s whose kids don't have this condition aren't going to know. I think planning ahead and having discussions about it is important, and it evolves when your kid is young versus getting older. And this is where it's very important to empower your own children to speak up in any setting, whether it's school going to a friend's house at a family gathering because they think if there's a larger family gathering and there's a lot of numbers, there's this false sense of security of numbers kind of like. As a pediatrician, I'm all about safety, right? And so I think about a summer gathering around a swimming pool.

00:15:07

Dr. Shelly Flais

Everyone assumes someone else is watching the little kids who can't swim, and that's not the case. So similarly, I see being at a large gathering with food present in little kids with food allergies. There's a risk of drowning. There's a risk of anaphylaxis, right? So so it's a process ahead of the event. To have conversations is important to have key dishes that you can bring that you know, are safe and I won't lie, especially when it's like a peanut tree nut. I brought desserts to everything for years. I made homemade from scratch birthday cakes for years. It's the silver lining is you get to be a great cook and you find great recipes. And I basically scoured. I love cooking and I found every recipe that either didn't want my ingredients or had easy substitutes and created quite a binder full. And so that's the number one way you can make sure that your kiddo is safe. And then also learning to speak up for themselves, making sure that they have the ingredients in terms of family members. I have been blunt at times and I have said the food is essentially poison to my child. You know, peanut butter would essentially be poison to my child. And to use a phrase like that, while dramatic, it's appropriate. I empower you to say that I think part of it is generationally or in terms of extended family, sometimes we feel bad like we might hurt someone's feelings, that it's not our place. But as parents, as moms and dads, we are our child's greatest advocate, especially when they're younger.

00:16:55

Dr. Shelly Flais

They haven't developed these skills yet. That's our job to keep them safe. So a little bit of it is getting that thicker skin and knowing there's a way to say it, but there's a way to say and start off with We want what's safest for my child if there is an insistence to have certain dishes or not play it safe. I think a lot of us have experience with this with our different levels of COVID for consciousness precautions. Family members have been greatly divided on that, too, and that's something that comes up in my practice all the time. And I'll say you have the right as a parent. If you don't feel the event is going to be safe, then you have my support to say this isn't safe for our family and we will choose that to attend an education. I think that sharing this is a little bit tricky. I was actually asked by a close family member a couple of years into my son's diagnosis that when are we going to go ahead and start eating these foods again? And it was somebody with a medical background. And at that point, for my self-preservation, I wasn't launching into numbers. I didn't detail his most recent allergy specialist appointment. I didn't pull out the labs of the blood work, showing his reactions and the size of his skin testing at that point for self-preservation. I said it's still an issue. It will likely be lifelong. And I moved on because as a person, that's really hard to hear. So I think to circle back, my main theme is that we are our child's greatest advocates.

00:18:43

Dr. Shelly Flais

And you will be pleasantly surprised. I'm a positive person, so I want to end on a positive note because of the prevalence of food allergies. A lot of our kiddos, relatives and friends know families that are affected. Have a best friend who is affected. I'm always impressed by children themselves; seven, eight, nine year olds. They will know that their classmate can't eat x y z, and they will tell their parents, We need to make sure - I have a million stories of that, where the seven year old is telling the parents We can't have x y z in our house because my friends coming over and that's not safe. And so we Grown-Ups might drop the ball and our kids are going to pick up the ball. So I've been pleasantly surprised by people. Not that it's good that there are a lot of food allergies out there, but the statistics are such that we're going to have advocates in our community and it might come from surprising places, but that's where communities like Backstop and Red Sneakers for Oakley comes in, right? Because what if you don't have someone like this in your social circle? The emotional stress of it to be able to communicate with people who get it is huge because if nothing else, besides sharing like practical advice, tips, strategies just to know that you're not alone, that's huge and that will empower you and help and interim calm you down and then in turn, help you coach your child appropriately with a positive slant. So it was a long answer.

00:20:21

Liz Voyles

That's helpful, though, I mean, they're watching us, right? As we educate family members, the children see us do that. And we’re that example and so I know it took me some learning to figure out how to do it with my family. But then I see my daughter, who's now 11, doing it herself, and she's using a lot of the same language that I use. So that piece is rewarding and it gets easier over time, I've found.

00:20:50

Dr. Shelly Flais

Thank you for saying that that is huge. Kids do what they see and her watching you advocate for her then led to the language, the know-how, the ability to speak up. So that's huge.

00:21:05

Liz Voyles

Yes. But I feel for those of you who have two- three year olds who are not doing that yet and that burden is on your shoulders for now. Ok, we have an interesting question about how to interpret some of the testing and specifically IgE scores. Can you talk to us? What is an IgE  score and then how should we think about our child's IgE score once we get it? What are the caveats? What information does it give us?

00:21:40

Dr. Shelly Flais

Great question. And this is why and this is really hard because I know we have a national audience today. I'm amazed by how the carrying of food allergies occurs geographically, and I'm where I'm a primary care pediatrician and I'm so fortunate to live and work in the Chicago area where we have specialists galore, including plenty of pediatric allergy specialists. And I'm usually not concerned about getting my kiddos in with a specialist. That's not always the case, and some families go to family practice. They have a certain medical home that's more primary care focused. And so this is where it starts to get confusing. So I think step one, I would advocate for looking into your region's pediatric allergy food allergy opportunities. And I specifically say food allergy because that's a growing area within allergy. There are older allergists who are more accustomed to asthma, wheezing the other conditions of the HFP family, so to speak, because as we know, seasonal allergies, food allergies, eczema, atopic dermatitis, asthma, they all kind of run in the same circles. But because food allergy is a more recent phenomenon, I've come across allergy specialists of older generations who are not as well versed in the latest information. So, number one, make sure you're connecting with your region's quality pediatric allergy specialists. But number two, making sure that they're not just an allergist but well-versed in the last 10 years of food allergy research.

00:23:20

Dr. Shelly Flais

Of note, there was a huge study in 2012, so just 10 years ago it was a genius study. It basically looked at what the researchers saw. There were certain Western countries that had high allergy peanut allergy incidence. And then Israel, which is like the U.K., the U.S. had hardly any peanut allergy, and there's a common snack there that contains peanuts that toddlers get like a cheerio, but it contains peanuts. They did an actual study that showed the longer you waited to have peanut, the more likely you were to have a peanut allergy. This has turned the allergy world on its head. We really, in the past 20 years haven't had news like What can we all do with the prior evidence, like when my son was a child, he said waiting didn't help. So to actually have some information is huge. So things like that, even in my pediatrics community, I'm seeing bad information being given out. So we want to make sure you're getting quality information when it comes to the blood tests. I see it all the time where there's only blood tests and a family is told that they can't eat six different things, 10 different things. This is where it's huge to speak with a specialist because even the infants, and there's no such thing as too young because with seasonal allergies, sometimes allergies wait a couple of years.

00:24:40

Dr. Shelly Flais

With food allergies, we do not wait. Infants qualify for testing. We need skin testing because it's really the skin testing and the blood testing together to make the appropriate determination. And something that breaks my heart is when a family is told they can't eat eight different items and it turns their lives upside down, and the kid develops anxieties and selective eating patterns and has all these fraught emotions around a basic thing we do as humans. That's just breaks my heart. So that's another reason why it's huge to make sure you're getting the guidance so personally in my practice. In the Chicago suburbs, as a primary care pediatrician, if and when it gets to this, for example, I'll have a child who went to a gathering, had a food for the first time, had a reaction. They need epinephrine on hand. No question that I'm handing out epinephrine like water in my practice. I walk in an airport, any public setting where there's defibrillators connected to the wall. We need epinephrine everywhere. A lot of kids have their first reaction in school and they don't have a known diagnosis, but they need epinephrine. I'm lucky to live in Illinois, where one of the states that has mandated epinephrine to be present in schools. And so that's something on a political level on a broader level is something I feel strongly about.

00:26:01

Dr. Shelly Flais

But that aside, I'm handing out epinephrine. I'm coaching. A big theme is: when in doubt, give epi because it's going to do more benefit than harm. A super common conditioned situation is - my kid is developing these symptoms. Should I give it? If you're thinking you should give it, you should give it. But then at that point to get further testing, especially if it's an infant who reacted to one item. We have our so-called Big Six, where there's six foods that cause 90% of food allergies. We want to make sure if they haven't had other items on that list, for example, shellfish, a lot of eight month old babies are not having shrimp.  We need to do further testing to figure out what we're dealing with be determine what else is or is not safe. So it's really important for you to look at it. And it's confusing because there's so many blood tests where you get the result and it's like, boom. This IgE testing is so patient, specific and situation specific and needs to be interpreted in the context of skin testing as well. I would strongly advise doing that with the guidance of a pediatric allergy specialist with skin tests as well. So that was a long answer to your question.

00:27:24

Liz Voyles

Great answer. Ok, everyone, these questions are fabulous and please keep them coming. They're really, really good. Ok, so we're seeing a few questions about picky eaters. We have children who have probably had an event around food that makes them a little anxious  and anxious around food in general, and the number of foods that they're eating becomes unnecessarily narrow. So we're getting questions about how to introduce new foods and kind of how to deal with that anxiety. And then when does a child's diet get too narrow? When should we really start thinking of that as a serious issue?

00:28:16

Dr. Shelly Flais

And Liz of these questions, did any of our participants mention ages because it does evolve through the ages? That's OK, because I can kind of speak to younger kiddos and then older kiddos.

00:28:29

Liz Voyles

Yes, I'm seeing one from a parent of a five year old, another from a parent with an eight year old. And then after this one, I'm going to ask you another question about anxiety around food in the late teens going into college.

00:28:44

Dr. Shelly Flais

Ok, so definitely we'll stratify and to keep the big picture in mind. So many toddlers and  preschoolers are selective eaters. And so this is something that I see in all of my patients. But then when there's a food allergy involved, because of the necessary caution we have to take and the extra steps that we take, our kids pick up on this and are very aware. And so I'll start with the preschool set. Awareness is huge. And for the family, I think a big theme that we always had in our house because two of my four have food allergies. Yes, you can't eat these two or three items, but you can eat 10 million other things. And so we tried to emphasize the positive of trying new recipes. We cooked a ton. I had my sons in the kitchen from an early age, and I'm grateful to say they cook all the time now and they're going to be a great catch one day. But so that's a silver lining, but empowering them to get into their food, so to speak, and learn more about the food prep, even if it's growing peas in a pot on your porch, or if you can have a full fledged vegetable garden to have safe foods. Demystifying foods. I think dining is such a multi-sensory experience. You've got the social of dinnertime and everyone's gathered at the table.

00:30:25

Dr. Shelly Flais

You've got the smells, you've got the taste, the flavors. So there's a lot there for all children. And with food allergies, it's ramped up 10 degrees because of the safety factor. So a key step also is to make sure whatever the food is that they are allergic to, at least when your kids are younger. I really advocate for having a home free of that item. Sometimes we parents will have a stash of, you know, some candies that have peanuts or a jar of peanut butter when my kids were small. I'm sorry it wasn't worth the risk and just in my work as a pediatrician. Kids are smart. They know where everything is. They will get into your supposedly secret stash. So I think that you will be calmer as a parent if it's a nut free home and you don't have to worry about cross-contamination, you don't have to worry about if someone used a knife, licked it off and stuck it in the sink and a kid is going to grab it and get a reaction from it. So I think when children for sure are, I would say, under seven, It was a nut free home and I made it a joke. I said, well there are enough nuts in this house, just not the food, you know, meaning that we're the nuts in our house. And so that is a layer of safety to keep you calm as your kid grows.

00:31:52

Dr. Shelly Flais

Emphasizing the things that they do enjoy and then putting twists on it, there's a big trend on sneaking vegetables into smoothies and that sort of thing. I'm not a big fan of that because I mean, fine in a pinch. Go ahead and do that. But it doesn't teach the child to appreciate the food. Preparing food different ways. Boiled broccoli? No thank you. Steamed can get soggy, even roasting it with extra virgin olive oil of kosher salt. Fresh, cracked pepper throw it in the oven. Let it get crispy, almost like a chip. Yes, you make any vegetable like that, and I think kids are going to eat it. So I think the preparation and when I talked to kids in my office, I will talk straight to the kid and say, You know, you're growing, you're evolving. Your taste buds are changing something that you didn't like a year or two ago. Perhaps you like now. So if it's safe? Give it a try. Give it at least a couple of bites. And you can even get your pediatrician in on it. It's interesting because my oldest child, who's now a college sophomore, is kind of an adventurous eater which scares me. But I think it is because we emphasized all the millions of things you can eat. If he was so annoyed being told you can't eat x y z that if he was allowed to eat something, he was going to eat it, even if it was one of those scary dishes on the Discovery Channel or something.

00:33:13

Dr. Shelly Flais

And so I don't know if that's a good or bad thing either, because sometimes I'll hear after the fact that he tried a new restaurant and I was like, Did you have your epinephrine? So the pendulum, you want like that safe spot, right? I don't know that you want to be like him, but it’ll evolve. So and I think you can tell that I'm a pediatrician and a mom of teenagers because I'm really about the life skills. And so summertime or weekends, when you have more time starting in junior high, I started to assign my kids a night of the week where they were responsible for planning and cooking dinner. And so if they have a limited set, and cereals not allowed, by the way. And so if your kiddo is a selective eater having issues to kind of mix it up instead of just making it about the power struggle, then like, OK, well, what can we eat? What do you want to eat? Let's look at some websites. Let's look at some cookbooks. Empowering them to broaden their own horizons as they get older is big. And I'm jumping all over the age groups, but something I say to all of my patients, toddlers and preschoolers.

00:34:23

Dr. Shelly Flais

Can only exercise their power in a couple of domains. The toilet is one of them, and I think all of us parents can relate to that, but food is a huge domain where kiddos hold the power. It's up to us parents, what and when we serve it, it's up to kids what goes in and if it becomes a power struggle. For example, if your food allergic child is an extremely selective eater and I prefer the term selective eater, not picky eater, the more you try this, try this, try this, the more invested they see you are. It will backfire. So it's really important that we present a calm, even if we don't feel calm inside,  to kind of Mary Poppins yourself. And let's try this today, whether it's successful or not successful. And I think that's part of it. Like, if it's successful, you want to cheer and make a big deal out of it, but. Ultimately, food is nourishment. Ultimately, food fuels our bodies, so whether it's going great or not so great - kind of gauge your responses. Keeping that big picture in mind, and I think that's really hard. And that's something that applies to all children, but for food allergy kids, it's really amplified. And just an extra note for those of us who have families with children, with food allergies and other kids who don't.

00:35:46

Dr. Shelly Flais

That's another issue that I've lived with myself. For example, you are nut free house. My other kiddos Actually, don't even when offered the chance out and about, they don't even want to eat it because they just have these connotations of it. And that's fine with me because that's ultimately safer. But that's a dynamic that's a whole separate conversation. And especially if it's a younger child who has a food allergy because you may have had years of eating certain foods in your home, maybe your oldest child only eats peanut butter and jelly sandwiches, and now you have an infant who cannot eat peanuts. That's a challenge and something to navigate. And I will say I'm a big fan of Soy Nut Butter. There's Soy Nut Butter brands that are totally peanut free. Sunflower butter is another option. And then we have some kiddos in conjunction. If you've talked to your pediatric allergist, they'll know specifically which tree nuts are and are not OK. And now that we have more information about early introduction, the child might have a cashew allergy, but they can eat almonds, for example. So that's something to keep in mind because you actually do want to give the food they can tolerate so that they don't develop that allergy. And that's something crazy. Just in the last five, 10 years that even though I'm well versed in this, I'm getting used to it because it used to be that we just can't eat any nuts.

00:37:16

Dr. Shelly Flais

But talk to your specialist to determine because the pediatric allergist in my area, when they get their reports and make the determinations, they will say, We want you to eat cashew butter three times a week. This amount almost like a medication to prevent that from becoming an allergy to. And then Liz, if I may. Just a quick aside, because there's so many alternative diets at this point and so many people are vegetarian and vegan. We talked about families and friends and gatherings and misconceptions. I've even experienced people thinking that certain things are vegan, so they're safe for allergy families. And OK, vegan by definition, means no egg. So if you're egg allergic, then veganism is a wonderful trend that happens to coincide with your medical need. But in terms of the misinformation out there, it amazes me how much is out there and people will think, Oh, it's safe for you because it's vegan. I just heard on the radio someone was talking about prepping something that was similar to pesto, and had cashews in it. And so for those of us who can't go there, it sounds healthy or it's organic, so it's safe. That's another misconception, I see. So it's yet exhibit: 247 why we got to read labels and educate ourselves and others.

00:38:43

Liz Voyles

Yeah, I know that we recently had a cashew incident about cashews being in a food that I never would have guessed they would have been there. But it's sort of this trend now, and some of those trends can be a double edged sword, right?

00:39:03

Dr. Shelly Flais

Exactly

00:39:06

Liz Voyles

Ok, so we have two questions from folks with teenagers who are thinking about college and as a mom who has successfully, how many kids have gone to college now in your house?

00:39:19

Dr. Shelly Flais

So it depends on the minute because I have a college sophomore and then my middle guys are twins. They're 18, and they’re high school seniors trying to figure out where they're going next year. And then my baby is a high school sophomore. And so it's interesting because I feel because this generation has grown up, colleges and universities are aware, and there's been some really vocal students who have self advocated. And if their university didn't have safe meal plans or dining halls, they advocated and made it happen. Yet another example of kids advocating for themselves and doing the work that we stodgy adults maybe didn't do ourselves. So my oldest is at Northwestern and they pride themselves on their food allergy preparedness and everything is really labeled well. Again, it's that false sense of security because I think that things can be labeled food allergy friendly or even specific dining halls might be free of certain allergens. We are diverse. Our kiddos and my patients are diverse. And food allergy means different things for different people. And so it would be a little bit cautious if you hear like, this is a food allergy friendly hall. What is your condition? What are your foods? Epinephrine, epinephrine, epinephrine…sadly, there's tales every year about college kids road tripping, and they didn't pack their epi and they stopped to get a snack. And it was a tragic outcome. And I'm sorry to be a downer, but the biggest thing you can do, and it's interesting. I think this is the philosophy my oldest had with his crazy eating habits and eating octopus. And everything is ultimately - we have epinephrine. Not that you want it. You want layers of protection. You obviously don't want to put yourself in that situation. But if you have your epinephrine, that's ultimately the biggest thing.

00:41:26

Dr. Shelly Flais

And it's interesting. While I don't, I didn't enjoy my son having these near-death experiences. He by the time he had that junior high event, he administered his own epinephrine as I watched and that was huge and I was very nervous about that. But from that point on there was a shift and he was increasingly away from us because that's what how teenagers live, work school activities. And I knew that OK, when my brain would start to go to a scary place, what if something happens? He has self-administered. He knows what to do. He knows what to look for. He's done it. So I would advocate as your kid gets older and God forbid, you're in the situation. And I think the trainers are huge in the Backstop videos showing the videos, because if you haven't practiced in a while, you are rusty. You want it to be like ABCs. Why do we renew our CPR certification all the time? Because you want to be ready in the heat of the moment. So similarly, practice use your trainer devices as frequently as possible and as your kids get older. Show them the videos. And what if you have a version of epinephrine that you're not as aware with? That's why the Backstop videos are cool because there's six different kinds that are demonstrated. So I think practice and education and being prepared is all huge and that's parenthood, right? It's a leap of faith. We are raising future adults to leave us and navigate this world. And that's the greatest irony, because to go from the newborn infancy stages where they're relying on us for everything and we can control so much in their worlds to that complete shift. Rome wasn't built in a day and that it'll be a process over time.

00:43:19

Liz Voyles

I'd be remiss if I didn't tell everyone on the webinar that Dr. Flais is our Backstop epinephrine injector video star. And you can get access to all of the wonderful free videos where Dr. Flais shows you and any caregiver that you share the videos with how to use your epinephrine injector in an emergency in the free app, the Backstop app, which is just in the App Store if you search for Backstop allergy. So that's that's something everyone on this webinar, please download that. Ok, we've got a really interesting question about being an allergy parent in the era of COVID. A few parents are saying that they're hesitant to give epinephrine during the pandemic because they're afraid of having to go to the E.R. and potentially exposing their child and therefore their family to it. So should parents use Benadryl instead of epinephrine during these trying times? And how do you make that call?

00:44:40

Dr. Shelly Flais

Excellent question. And you're not wrong. I will say ers are swamped right now. This month in particular, has been really challenging for health care facilities across the country. The Benadryl epi question I can answer right away respective of how busy ERS are. My theme is if you think you need to give up, you need to give EPI. It causes an increase in heart rate. There can be swelling at the injection site. I would rather a child get it unnecessarily than have a devastating outcome, Benadryl in particular, and actually I'm a people person. I got my notes here. Benadryl is an interesting area because allergy specialists for years have been sounding the horn that that's an older school antihistamine that wears off quickly. It makes kids drowsy and the newer generation antihistamines such as Zyrtec Allegra, which are Cetirizine, and Fexofenadine, are non drowsy and simply work better for allergic situations of all kinds. To be clear, anaphylaxis is always epinephrine, but I just want to have the Benadryl conversation, so it's something that I see and I even hear phone advice. Oh, you're having hives to something. Give Benadryl. I am on a one woman mission to help spread the word to go for the newer generation antihistamines. Something I like to say in my office is commercial airline pilots. Military pilots can't use Benadryl because it's like being drunk. And so to give this to a two year old, we've had sadly, unfortunately, there's situations where kids get too much Benadryl and there's a bad outcome. So that's a big shift for the medical community. And there's something called medical inertia where when we've recommended something for decades, it takes time.

00:46:51

Dr. Shelly Flais

So this article was published in the Allergy, Asthma and Clinical Immunology Journal. This was 2019. Here we are. Three years later, we're still here and when it gets to the point of national organizations saying, Hey everybody, we need to do it this way. That means it's kind of been that way for a while. But the trickle down effect to primary care physicians, to school nurses, to families, it takes time. So this is something that every five, 10 years we get smarter and smarter at something that I've been trying to educate the families that I take care of about for families that have dealt with this for years and Benadryl is part of their arsenal. I'm remembering my emergency kits that I kept with me at all times. I had the single use vials of Benadryl liquid with me. I'm OK with you, keeping it as part of your arsenal. We are anxious about this. I want you to be prepared. But please introduce the newer generation antihistamines into your arsenal because that is the ideal first step. Different communities are hit differently, I know there was a specific question about a family who was worried about calling 911 because it would take longer to get to their local ER by ambulance as opposed to if they simply drove their child. I would say if you have more than one adult in the situation and you have epinephrine with you, if God forbid that were the case, you want someone with the child at all times able to administer EPI if you haven't already. But my advice even in COVID, continues to be:

00:48:36

Dr. Shelly Flais

Give epi first, call 911, you need the ER. There's something called a biphasic reaction where after the initial reaction, there's a second reaction. And that's why epinephrine comes in two kits. People often think, Oh, there's a two pack of epi, because one's for home, one's for school. No, it's for biphasic reactions because there can be a second reaction after the first one. And that's why I recommend the emergency room and I got news for you. If you're a three year old child who went into anaphylaxis, ER is triage, and you're going to get bumped to the front of the line. And so people who are there to get five stitches placed are going to wait because your child is going to be prioritized. It's not first come first serve in the ER, it's who needs urgent attention now. So I think that's something that I want to emphasize as well. You're truly there for an emergency. And sadly, in this day and age, even with COVID, you'll notice there's public service announcements going on, like if you're having x y z stay home because ers are swamped right now. But sad to say, if you're an anaphylaxis, you're going to get bumped to the front of the line. So I still, even in a pandemic, would say we're having a reaction. If we're giving EPI, we're calling 9-1-1 and going to the E.R.. And if you live next door and have a second adult and you've got a second epi in your hand, OK, get over there. But I'm still going to say 9-1-1.

00:50:05

Liz Voyles

All right, so we have a question about food labels, what to trust. Cross-contamination the many different snack brands out there that are being marketed towards allergy families. I know Backstop sometimes uses snack safely as a resource, but who do you trust and look to Dr Flais as you're trying to? Kind of, you know, luckily, it feels like progress to maybe not have to make everything at home and have some brands that we can rely on that are custom made for food allergy families. But what do you think about those new brands and where do you buy them, shop for them?

00:51:03

Dr. Shelly Flais

That's the million dollar question, and that is just a testament to what a lifestyle medical condition food allergies are. And it's a moving target, and that's why it's so important to connect with Backstop’s communities. Red sneakers for Oakley follow their social media pages. FARE (foodallergy.org) always has alerts coming out because part of it is a packaged product, even if the packaging looks the same. The companies do tweak their production methods year to year, and something that your child has safely eaten for years may not be. So those alerts are huge, and so staying aware and being balanced not letting it get you anxious. But it seems like I follow a lot of those pages and every week, every other week, there's undeclared x y z in this item or this item has changed. It didn't previously have Sesame, and now it does. Sesame is a big one because for years, Sesame wasn't labeled as one of the allergens. I think that's part of it. You read the ingredients and then it says in big print contains what are the more likely food allergies.  But every month there's a situation where something wasn't declared and it's actually in there. I always laugh when people talk about clean eating. We're talking about different diet styles, and that name cracks me up because it's cooking and using real ingredients. And you know, I would say the silver lining, like if you're cooking is from an actual real ingredients as much as possible, then you know what's in it. But the reality is we do use pre-prepared products. We use packaged products. And so I think staying current and then making sure whether it's the Backstop communities or Red Sneakers for Oakley or within your community, if there are food allergy networking opportunities to discuss this with families going through similar situations because that awareness is everything. Because the fact that it's a moving target makes me nervous. And then everything comes back to cook more at home.

00:53:23

Liz Voyles

That's good advice. We only have a few minutes left, but we have quite a few questions from parents about their own anxiety, which I think is really a brave question to ask. So questions about managing our own anxiety and then one asks, How can we ensure we're not quote passing that on to our allergic child? We have a parent who says that they're getting super anxious just when the phone rings because they're afraid. It's the daycare saying that there might be an issue with the child's food allergy. Can you talk to us a little bit about that?

00:54:09

Dr. Shelly Flais

I can so relate to that. The caller ID number comes up and our brains go to the worst case scenario that I have a practical tip for. You can let your kids, daycare or school staff know or whoever is with your child if you're away. Start the conversation or text with everything's OK. I actually heard this in reference to having teenagers and college kids because they tend to call us parents with their own tragedies of various proportions. Start off with everything's OK and then go from there because we know that nine times out of 10, everything's going to be OK. We are human. We experience the full range of emotions, it's funny, because when I'm honest with my patients, in my practice, they're like, Thank you for saying that because we think it's just us. Oh no, I'm an M.D.. I'm supposed to know this. It freaks me out. And anyone who pretends they've got it all together is either lying to themselves or to you. I will say a silver lining of the pandemic is that there's a lot more mental health awareness, and we are stressed for many reasons during COVID. Our lives have been disrupted as working parents, as mothers, the brunt of the navigating. Everything has fallen on us, so we're stressed.

00:55:34

Dr. Shelly Flais

And because it's been a couple of years of this now we think things should be normal. And they're absolutely not normal. These are not normal times. Throw in the food allergies. Absolutely. So I just want to normalize the anxiety. I want every parent listening to know that it's totally normal. I'm getting emotional saying this. It's totally normal. As your child grows when they're younger, you need to do a better a good job of venting elsewhere. And so there's the Mary Poppins face you're going to present in the situation you're going to be modeling, talking to family, friends, school staff in front of your child. Meet the teacher day. You're going to be having that conversation with their new teacher with your child totally listening. Kids are smart. They're absorbing all of it. But then you need to debrief whether that's with your partner, other food allergy parents, another trusted adult friend and make sure it's someone who understands. Because if your best friend from growing up doesn't understand and you've seen that on other occasions, you want to make sure you're talking to someone who understands because you want to be able to share those feelings. Again, the power of networking, the power of talking to other people who get it as your child grows.

00:56:54

Dr. Shelly Flais

It's interesting because I've had frank conversations with my high schooler and my college student about food allergies. I think part of it is because we're two years in a pandemic, say you have a four year old, they've lived half their lives with these modified school schedules. That's not normal. And so I like to say normal is a setting on a dryer. So I think that taking each situation being prepared, being trained. Coaching your kid as they get older is going to help, but we absolutely need to make sure that we're taking care of our own mental health. If you find that you are having a problem keeping that brave face with your child in an age appropriate way as time goes on, because I think it's very different for me to talk to my almost 20 year old about this versus when he was five. It was a totally different conversation and side note the first time we had to give up, We were at home and he was in his bedroom. He knew what was coming. He hid under his bed. He was in kindergarten at the time and I didn't want to give him his shot in his bedroom. That's a child safe space. And so I brought him to this hallway that goes to the garage.

00:58:16

Dr. Shelly Flais

I don't know how, but in the heat of the moment, I'm like, What's a part of our house that I don't want him afraid to go into again? So as I'm speaking of anxieties I didn't want him to be anxious about going into his bedroom? I didn't want this to happen that every time we walked into that space, we remembered. I don't want anywhere to be, though, so I can't say find a part of your house that isn't too specific. But at that time, As scary as it was, I tried to be as matter of fact about it as possible and then do what had to be done. And ultimately, our children and I think this is good to remember as a parent. Our children take their cues from us. If they see that we're panicking, they're going to panic. And so if we're calm, cool, collected, even fake it till you make it. If you can present that brave front, then your child in turn will say, We've got this, I've got my team. We know what we're doing. We've got this and that. It's just hard. It's hard. So debrief and make sure you're tending to your own mental health as well.

00:59:27

Liz Voyles

Yeah, that's really good advice. Ok, well, we have a lot of other questions that we were not able to get to, and I want to be mindful of everyone's time. I want to tell anyone who's question We did not get to answer today to take your question, hold on to it and then come to a huddle. They are held a number of times a week. You can go to getbackstop.com/events and you'll see all the upcoming huddles right there and you can sign up right on the website. So just bring those questions with you. And I'm sorry, we couldn't get to all of them today. We, of course, want to thank our partners Red Sneakers for Oakley, for hosting this event with us and just all the work they do day in, day out to keep our kids safe. We want to, of course, give a big hug and say thank you to Dr. Shelly Flais. Who's just this wonderful combination of super knowledgeable and also super accessible because she's been through it just like we're going through it all of us right now. So thank you, Dr. Flais. Your voice and your brain are just so special. Today's session has just given us a lot to think about. We are so glad that you all came. Keep in touch with us. You can chat with us on the website. We're going to be holding these larger events with experts every couple of weeks. So sign up on the website and we'll be emailing you whenever we have a webinar. We're trying to do them at slightly different times of day so that different people with different schedules can make it. And let's just all keep talking and supporting each other. So thank you for being here. And just be well and stay safe. All right. Bye, everyone.

Up next

Growth Mindset: Moving Forward After an Allergic Reaction

Course Lessons

Food Allergy Anxiety in Kids: What Parents Can Do to Address It
Food Allergy Anxiety in Kids: What Parents Can Do to Address It
How to Find Your Footing: Reducing Anxiety as a Food Allergy Parent
How to Find Your Footing: Reducing Anxiety as a Food Allergy Parent
Navigating Anxiety in Food Allergy Parenting Today
Navigating Anxiety in Food Allergy Parenting Today
Growth Mindset: Moving Forward After an Allergic Reaction
Growth Mindset: Moving Forward After an Allergic Reaction
Food Allergies at School: What Your Pediatrician Wants You to Know
Food Allergies at School: What Your Pediatrician Wants You to Know