Don't Feed the Fear: Food Allergy Anxiety & Trauma

New Criteria for Infant and Toddler Anaphylaxis with Dr. Michael Pistiner

Amanda Whitehouse Season 7 Episode 50

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In this first of a two-part conversation, I’m joined by Dr. Michael Pistiner, pediatric allergist and Director of Food Allergy Advocacy, Education, and Prevention at Mass General for Children, Harvard Medical School.

Dr. Pistiner discusses his work on developing the newly updated criteria for recognizing anaphylaxis in infants and toddlers, breaking down medical terminology into clear, everyday language parents can understand. He explains how reactions can progress from early to advanced anaphylaxis, the importance of giving epinephrine early, and how to recognize the signs even when they don’t look the way we might expect.

Dr. Pistiner has a gift for translating complex medical concepts into practical visuals that help parents see what’s happening, both in their child’s body and in their own decision-making process.

If you’ve ever worried about missing the signs or hesitated to give epinephrine, this conversation will give you the clarity and confidence to act when it matters most.

Food Allergy Management and Prevention
Support Tool for Infants and Toddlers:
https://famp-it.org/

Creating an Allergy and Anaphylaxis Plan:
https://www.healthychildren.org/English/health-issues/conditions/allergies-asthma/Pages/Create-an-Allergy-and-Anaphylaxis-Emergency-Plan.aspx?sfns=mo

AAP Allergy and Anaphylaxis Emergency Plan:
https://publications.aap.org/pediatriccare/resources/17512/AAP-Allergy-and-Anaphylaxis-Emergency-Plan?autologincheck=redirected

Parental experience administering epinephrine for systemic reactions during infant and toddler oral food challenges: https://www.jaci-inpractice.org/article/S2213-2198(24)00687-1/fulltext

Development and Evaluation of Modified Criteria for Infant and Toddler Anaphylaxis:
https://pubmed.ncbi.nlm.nih.gov/38777125/

How to Use an Epinephrine Auto Injector:
https://www.healthychildren.org/English/health-issues/injuries-emergencies/Pages/How-to-Use-an-Epinephrine-Auto-Injector.aspx

Mass General Food Allergy Buddies Program:
https://www.massgeneral.org/children/food-allergies/food-allergy-community

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



Michael Pistiner, MD, MMSc, FAAP:

As more and more babies are showing up to allergists and primary care offices. With allergic reactions comes the increased need for improvement in recognizing and training people about anaphylaxis. A severe, potentially life-threatening allergic reaction that may not look quite the same in a baby as compared to a bigger kid or a grownup.

Speaker:

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..

On today's episode. I'm excited to introduce you to someone you may already know. He's a huge voice in the allergy world and doing such important work to help protect our children. Dr. Michael Pistiner is a pediatric allergist and the director of Food Allergy Advocacy Education and Prevention, At Mass General for children. Harvard Medical School. Dr. Pistiner is a leading voice in the field specializing in food allergy and anaphylaxis management in infants and toddlers, which is what he's here to talk to us about today. Dr. Pistiner is here to walk us through the newly updated criteria for diagnosing anaphylaxis in infants and toddlers. Explain to us why those updates matter and share what we should be looking for when a young child is potentially having a reaction, he even demonstrates the best approaches for administering epinephrine safely and effectively in very young children. And what epinephrine is the most appropriate to have on hand for most children in this age and weight range? I have met few people who are so enthusiastic about helping young children to be safer and to help their families navigate their food allergies. He combines his clinical expertise with his compassion and clarity and motivation to get the word out, which makes him an incredible advocate for our community.

Amanda Whitehouse, PhD:

Dr. Pistiner, thank you so much for joining me here today. There's so many things I've wanted to have you on the show to talk about, thank you for being here

Michael Pistiner, MD, MMSc, FAAP:

all right. Thanks for having me.

Amanda Whitehouse, PhD:

Give us a little background about you and your career and how you got connected with the food allergy world and research?

Michael Pistiner, MD, MMSc, FAAP:

Yeah. Um, so I am a pediatric allergist and I. Am the father of a 22-year-old with food allergy. And when I was training to be a pediatric allergist, uh, that's when he had his first allergic reaction. And so when I became the dad of a kid with food allergy, um, I started learning how tricky and challenging things can be. And so it took my family about two months before we got comfortable and I started realizing that their. Were major gaps when it came to advocacy and community education and really started getting involved and engaged. And, uh, now I like saying that I kind of don't know what my hobby is and my job is anymore. And so now I'm at Mass General, uh, for children and I am a, um, director of food allergy advocacy education and prevention. Um, my clinical focus now is. Managing food allergy and anaphylaxis in infants and toddlers. Um, and then I also, uh, um, help run the Food Allergy Buddies program, um, and other advocacy and educational, um, uh, programs and projects.

Amanda Whitehouse, PhD:

I, I have to say, we like hearing from you when we know that you get it from that side too, especially.

Michael Pistiner, MD, MMSc, FAAP:

Yeah, I think that I did, uh, um, I learned, learned the most as a dad. Um, doctoring is easy.

Amanda Whitehouse, PhD:

Let's start by talking about what prompted this update? To modify the criteria in these younger ages of children for anaphylaxis?

Michael Pistiner, MD, MMSc, FAAP:

So our field has been recognizing that early introduction in, um, babies food allergy. And so where decades ago people were recommending delaying the introduction of highly allergenic foods, um, after the leap. in 2015 was published. That was good hard evidence. That early introduction. In that case, peanut uh, babies from developing peanut allergy. And so as our field has figured this out and is feeding babies earlier, um, now we allergens. Um, now we are starting to identify more and more infants that have food allergies. And so where traditionally, 20 years ago, allergists weren't seeing that many kids underage too. Now they're coming like a fire hose. Um, and the babies just keep getting born and we really need to accommodate to this new patient population. Um, and as. More and more babies are showing up to allergists and primary care offices. With allergic reactions comes the increased need for improvement in recognizing and training people about anaphylaxis. A severe, potentially life-threatening allergic reaction that may not look quite the same in a baby as compared to a bigger kid or a grownup.

Amanda Whitehouse, PhD:

So how do you go about studying a concept that big?

Michael Pistiner, MD, MMSc, FAAP:

All right. Well, there's some challenges that are gonna come specific to the infants and the toddlers. One of them is babies don't talk. So when the criteria for identifying anaphylaxis was put together, it wasn't validated for kits less than age two. Some of the language in there actually asks for subjective signs and symptoms, things that someone would describe. So itchiness, dizziness, ache, of breath. And now as I'm saying'em, you could see how a baby can't tell us these things. We gotta know what to look for. So one of the challenges is. Babies can't talk, so they can't tell us what they're feeling. So we need to find surrogates. We need to find replacements of things we can look for that would otherwise tell us this. Another thing is that infants and toddlers have behaviors that can overlap with. Signs and symptoms of allergic reactions. A teething kid who's drooling all over the place crying and their hands are in their mouth. That's a little hard sometimes to differentiate that behavior from what might be the sensation of itching in a kid's mouth who's very uncomfortable and having an allergic reaction. And so this is where parents, babysitters. Doctors, emergency departments, we all need to start paying attention to these nuanced ways to recognize signs and symptoms in infants and toddlers. The criteria technically was meant for the healthcare setting for clinicians, and it involves using vital signs, exam history, and this was. Published and utilized now for years. 2006 was when, um, this proposed criteria, the N-I-A-I-D criteria, um, led by Hugh Sampson and his colleagues and. Has been used readily in the United States and then also beyond. We've been. Seeing some of these anecdotally and other groups have also had publications where they were showing that maybe infants and toddlers don't have the very same signs and symptoms as the bigger kids. And so there were publications from other teams over the years, from, Ruchi Guptas group, and others where they were showing that many babies tended to have skin and GI findings. They were reporting much lower cardiovascular findings and also some lower respiratory findings than the older cohort and the older kids. Many of those publications were retrospective emergency room studies, so they would go back to was documented in the emergency department, and they were looking for the signs and symptoms that were built into the criteria that I was talking about. And so around that time. My team worked with afa, asthma Allergy Foundation of America, and we published a survey that AFA led and that was asking primary caregivers who were present for their kids most severe allergic reaction when they were under age three. We were asking. What were the signs and symptoms that they observed in those most severe reactions? And we used some of the language that was proposed and used in past studies, but also anecdotally what we were experiencing in seeing in our patients. we that there were reports of signs and symptoms that weren't necessarily being. Communicated in some of those retrospective emergency room visits, because imagine if a family goes into an emergency department and the team doesn't know to ask for certain things, and even if a family says that my kid was raking at their tongue, they had their fingers in their ears, then that might not be something that someone would write in their note. So there were. that we wanted to know that you really needed to get from the person who was actually watching the kid have the reaction. Um, and so part of the findings from that were then used to help us with the project where we proposed modifications to the criteria. Um, we also used. Pals, um, pediatric advanced life support recommendations for how someone would identify cardiovascular compromise in a child younger than age four. so. Cardiovascularly, infants and toddlers behave a little different than a bigger kid or a grownup when it comes to what they might show and the way their heart responds.'cause little kids' hearts are awesome at being able to compensate. And so where a grownup might have low blood pressure, hypotension, a baby have low blood pressure until they're very, very sick. So a baby's heart can compensate really well and can get very, very fast. And so that's how a baby is gonna deal with cardiovascular symptoms in the middle of anaphylaxis if they have'em by potentially getting tachycardic fast heart rate. Um, babies may also have poor perfusion, meaning that then the blood flow doesn't go great to their extremities. Babies might get cyanotic blue. They might have, um, be very pale. Uh, they might also have modeling of their skin, and some of that is because of poor perfusion. Babies may also, because of cardiovascular symptoms, have something tachypnia. might breathe very fast even though they may not have. Wheezing issues or coughing issues or lung issues that just the cardiac compensation can also make them tick knick. So these are signs that pediatricians and pediatric teams know to look for in what used to be called compensated shock. We don't wanna wait for a baby to have decompensated shock, which is low blood pressure. So this was something else that we proposed in the modifications to that criteria. another thing in the criteria that might be a bit different in the infants and toddlers is that. Some mucocutaneous changes, so some changes that you could see in the mucus membranes and the skin. A baby's is kind of unacceptable, like a swollen tongue or swollen uvula. Those we were considering more of an airway issue. So taking all of that into consideration the that babies can't communicate quite the same, and so we. Offered surrogates replacements of subjective symptoms. was one change. Then the other change I mentioned was, um, modification in cardiovascular symptoms, allowing for cardiovascular compromise, compensated shock as opposed to waiting for decompensated shock, um, and then also having the shift in some of the airway symptoms.

Amanda Whitehouse, PhD:

Can you talk to us about the misconceptions then that parents, caregivers, grandparents are having about what they think it will look like in their child and what it might actually look like that they would be likely to miss? Tell us from our eyes, what we would see, what we need to be looking for.

Michael Pistiner, MD, MMSc, FAAP:

Great. So we. Had that question when we put together the survey I was mentioning before with, uh, asthma Allergy Foundation of America and one of the banks of questions that we had was now in retrospect now after the dust has settled and now you're filling this thing out, were there signs and symptoms that you actually saw but you didn't know? It was an allergic reaction, and over 45% of people said that they did identify at least one sign or symptom. That now in retrospect, they know was part of the allergy, but they didn't then. So behavior change was one of the ones that people were reporting. Um, also skin findings also cough. And so there were some things that are important for people to know to recognize as potential allergic reactions. Um, I've seen children lick chairs. I've seen people put their fingers in their ears and seemingly scratch at their ears. Um, can pull up their knees to their chest back arch hiccups. Now, these are also, as I'm saying them, these are things that our kids do all the time, even when they're well. And so the thing to recognize and the thing to think about is that. In the setting of multiple systems, so signs and symptoms that represent more than one system, especially in the setting of a trigger, then this makes it a little easier for a family to be able to recognize, Hey, these behaviors, this is not just normal, baby. This is a potential allergic reaction.

Amanda Whitehouse, PhD:

We talk about that two systems, right? Identifying anaphylaxis is two systems involved. Is there a shortcut or is there an easy way that you teach this to parents as far as what falls under what systems?

Michael Pistiner, MD, MMSc, FAAP:

Yeah. Alright, so first off, food allergy and anaphylaxis emergency care plans are a nice cheat. So having a or something that a family, or important, a babysitter or. Secondary caregiver who now we have taught, so we, parents of kids with food allergies are now teaching all these other people to watch our kids so we could finally get a break. And so when we do that training, we definitely want to pass along these emergency care plans, which is a cheat sheet that somebody can look at that makes it easy to know when you would treat with epinephrine. And epinephrine is the treatment of choice for anaphylaxis. And it shuts the reaction down quickly and keeps it from progressing. And so we want people to have those cheat sheets readily available and understand them. Um, currently the American Academy of Pediatrics has one that has been created for all ages. And what's nice about attempting to have a universal action plan is that Primary care clinicians, pediatricians, family medicine, clinicians, if school nurses, if preschools, if allergists all accept this plan, then it can make communicating and passing the plan along very easy. Now, one thing with this plan is that it's not exactly. Created specifically for those infants and toddlers. It's got a couple of those subjective symptoms that I've been talking about where we need to know to look for surrogates. And so one of the things I've been doing is collaborating with Allergy Asthma Network to help create resources to help parents be able to know how to interpret that action plan when they have an infant or a toddler. And so. very, very long-winded answer to your question is getting an action plan and getting comfortable with it is a great way to, um, make it a little easier. But that aside, and I'd say everybody go look up the American Academy of Pediatrics Allergy and Anaphylaxis Emergency Care Plan and get comfortable with it.

Amanda Whitehouse, PhD:

I'll link that in the notes so

Michael Pistiner, MD, MMSc, FAAP:

All right,

Amanda Whitehouse, PhD:

people can find it easily.

Michael Pistiner, MD, MMSc, FAAP:

And then talking about ultimately you mentioned the more than one system, and so a system is a end organ skin derm could be considered one system, so swelling, hives, itching. A kid might be scratching, a kid might be rubbing their body up against the carpet. Um, you might see, um. Redness that's all over. You might also see welts hives. Um, in light skinned kids, you might see those hives look pink. Um, in a dark skinned kid, it might just be that you just see that it has contour, that it's raised, um, it might even look darker. And so getting used to your own kid and knowing what their skin looks like at their baseline is gonna be really helpful. Those would all be considered the skin system derm, um, GI vomiting, diarrhea. I would say more mild symptoms like hiccup and belly pain that a baby might show us because they're bringing their knees up. um. So respiratory system, wheezing, sneezing, would be more mild symptoms in the respiratory symptom. Um, in a little baby who's having a hard time breathing, where a big kid or a grownup might say they're short of breath, a little baby might have nasal flaring. That means their nostrils are moving back and forth. Um, they may have tugging where the skin in between their ribs goes in and out. They might be belly breathing where their belly goes up and down. Uh, they may also have, um, the skin above their sternum. Right in their neck might look like it's going in and out. So those are called retraction. So that's something we could see in a kid who is having a hard time breathing. Um, we may also then see for cardiovascular where a grownup might say that they're dizzy, um, or pass out. A little kid might have mental status change. They might have behavioral change, um, that's not attributable to anything else other than the allergic reaction. And so they might have quick lethargy, which is very quiet. Um, one of the words that we use is obtunded. Um, they might almost be passing out, falling asleep, have a hard time keeping their head up, get floppy, wobbly, a poor head control. Um. You also might see the opposite, where a kid might become very irritable, inconsolable, um, total change in behavior. Um, no obvious trigger or cause other than the potential allergic reaction. And so those behavioral changes actually can be thought to be cardiovascular. You also then have the system of. Neuro, which overlaps a little bit with what I was talking about here. and so getting comfortable understanding which signs and symptoms fit in which system can be a helpful tip and trick to know, ah, you know what? We're dealing with an allergic reaction that's more than just mild and contained.

Amanda Whitehouse, PhD:

This is so helpful. Thank you so much, because describing it in those. terms that, parents, wouldn't have known, but to think that specifically and connect it, I think is so important for people in having a better idea of what this looks like.

Michael Pistiner, MD, MMSc, FAAP:

Do you

Amanda Whitehouse, PhD:

It's helpful.

Michael Pistiner, MD, MMSc, FAAP:

some?

Amanda Whitehouse, PhD:

Absolutely.

Michael Pistiner, MD, MMSc, FAAP:

All right. So. One of the things to talk about while we're talking about recognizing a potentially severe allergic reaction is gonna be what do you do when you recognize it? So once you think that this thing might be anaphylaxis, now you're gonna wanna shut it down with epinephrine. is the drug of choice to treat anaphylaxis and epinephrine helps you get control of the situation. And so you'll hear me say that probably four or five times in the rest of what we're talking about is when in doubt if you gotta get control. If you're losing control, epinephrine gets you control. Um, because it works everywhere where we want it to. In all those systems that I was talking about, epinephrine is gonna wind up taking care of business. Um, and so most importantly, epinephrine works on the receptors of the cell membranes of the allergy cells. Uh, the two that we talk about, a lot of the mast cells in the basophils. And so when epi is around. It's less likely that these guys are gonna be able to de granulate and release what's inside them. And what's inside these allergy cells is more than just histamine. We got platelet activating factor leukotrienes, all these baddies that are gonna make blood vessels, leaky and floppy, that leakiness. Then you can have hives and swelling. When the fluid leaves the blood vessels, it's leaving the intravascular space, and when it leaves, it doesn't just go back in. And so the longer you're gonna go with that leakiness, the more fluid you're gonna lose. And then that's when IV fluid might be needed when somebody goes a while without shutting it down. And so. Another thing that can happen when the reaction is going on is that smooth muscle of the upper airway, or smooth muscle, excuse me, of the lungs and the lower airway, can constrict and make a picture that looks very much like an asthma attack. Coughing, wheezing, mucus secretion, all things that are gonna make it harder to breathe. And the longer then someone goes without epinephrine, the more that process can keep happening. And so in when we're thinking about respiratory, if early on somebody would've had five sneezes, then if they wait and they don't treat, then it might turn into a bunch of coughs. Then those coughs turn into wheezes. And now we have somebody who's really working hard to breathe and has the nasal flaring and the intercostal retractions I was talking about. Um, and then they need oxygen and then they need more epinephrine. Um, and so this is where early on treating, you wouldn't necessarily know what it was gonna turn into. Where when we're thinking about gi um, winds up being able to kind of turn off the peristalsis that would be causing vomiting and it can turn off the diarrhea and shut things down. Um, so if someone waited to give epinephrine, then the hiccups and the. Belly pain that you might be looking at from pulling up the knees and a kid back arching might turn into the vomiting, which then turns into vomiting and diarrhea. And now we have more fluid losses, which I was talking about before. And then we might have this kid who has behavioral changes in the setting of other signs and symptoms, and first they get cranky and then they get irritable, and now they're inconsolable. But if someone waits to treat, then they might get obtunded, lethargic, um, and difficult to arouse. And so every person who experiences an allergic reaction, every one of the young kids might look different than another young kid. And then each time they have an allergic reaction, they might look different from themselves from the last time they had one. Being able to kind of recognize some of these patterns and understand these systems and understand symptoms within the system will really help you know when it's time to get that epi and shut things down.

Amanda Whitehouse, PhD:

Yeah, and I, I'm so glad that you emphasized that because I do think a lot of us as parents, we get hooked on, well, this is what happens to him. He always has a rash first, or he always has this or that, and it might not look the. Same from reaction to reaction,

Michael Pistiner, MD, MMSc, FAAP:

that's right. And then just having that sense of pattern recognition is gonna help. And now to bring it back to what you said, which. I like thinking about it that way is more than one system is two systems or more, then it's go time. Um, and so if somebody has an exposure to likely allergen and now they have sneezing. They have hives around their mouth in the area where the food touched. I feel good that that's a great time to use epinephrine and shut things down. And so those are mild symptoms. I'd say they're nothing burgers, but you take two of them in two different systems. And then I like saying this also. I would never call it mild anaphylaxis because that's an oxymoron. I'd call it early anaphylaxis, the perfect time to use epinephrine'cause we're not interested in seeing what's gonna happen. And as I mentioned it before, you don't need to wait for your five sneezes to turn into coughing, wheezing, respiratory distress. You don't need to wait until your local hives turn into full body hives with swelling, angioedema, and then a floppy kid who's having cardiovascular symptoms. Let's just treat'em early on.

We will pause our conversation there with Dr. Pistiner and pick up again next week. I hope this gives you a clearer, more confident understanding of what anaphylaxis can look like in very young children and how it's different from what we've heard in the past and how it presents in older people. It's such an important step forward in helping caregivers and clinicians confidently identify reactions early and Act fast by administering epinephrine, which is what we'll be talking about next week. So your first action step is to come back for part two next week. That's where we'll dive into how to administer epinephrine safely and effectively in infants and toddlers. How to get comfortable with the concept of using the epinephrine and talk about which device is the best suited for this age group. Number two, learn more about the updated criteria that Dr. Pistiner told us about today and explore the resources that he has created@fpi.org. And that's FAMP-it.org. The link will be in the show notes, and this is where Dr. Pistiner and his team have, have shared tools for food allergy management and prevention. Including information about early food introduction skincare and eczema management. IgE mediated food allergy and non IgE mediated food allergy. to Follow Dr. Pistiner's work. The website is mass general.org/children/allergy. You'll find so many resources, and so much information there, as well as links to their social media. On Facebook, you can find the food allergy center at mgh. And an account for their food allergy buddies program. And third. Share this episode with your co-parent with family members, childcare providers, babysitters, healthcare professionals in your circle. Anyone who might be caring for an infant or a toddler with food allergies who might not yet know about these changes in the recommendations for identifying and treating anaphylactic reaction, in people who aren't old enough to express it in the words that are typically used. Thank you for tuning in and for being part of this growing community with me, and we will be back next week with more on administering epinephrine to this population of young children and babies. the content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.