This webinar was recorded on Tuesday, October 18, 2022
This webinar will provide physicians, nurses, caregivers, patients and families with age-specific, evidence-based and practical recommendations to facilitate discussions managing and coping with food allergies.
Speakers:
- Lisa Bartnikas, MD – Assistant Professor of Pediatrics, Harvard Medical School – Attending in Allergy/Immunology, Boston Children’s Hospital
- Jennifer LeBovidge, PhD – Assistant Professor – Attending Psychologist, Allergy/Immunology, Boston Children’s Hospital
- Theresa A. Bingemann, MD – Associate Professor of Pediatrics and Medicine – Attending in Allergy/Immunology, University of Rochester
Resource:
Transcript:This transcript is automatically generated. While this transcript is believed to be accurate, errors sometimes occur. It remains your responsibility to evaluate the accuracy and completeness of the information in this transcript. This transcript is not intended to substitute for professional medical advice.
Speaker 1 (00:05)
Food allergies are a struggle for so many families, and they are challenged by questions like when is my child old enough to understand their allergy? And how can we handle routines when my child has allergies? Or how can I get my teenager to respect what they need to do for their allergy? Families need a road map tailored to education, and it’s finally here. Today’s speakers will lead you through their vital work in allergy. This is Sally Schoessler, director of education for Allergy and Asthma Network. Today’s webinar helps Allergy & Asthma Network live out our mission to end the needless death and suffering due to asthma, allergies and related conditions through outreach, education, advocacy, and research. We are pleased to welcome today’s speakers and it’s my pleasure to introduce them to you. Dr. Theresa A. Bingemann is associate professor of pediatrics and medicine in the divisions of allergy, immunology and rheumatology and pediatric allergy and immunology at the University of Rochester. She is the program director for the Allergy and Immunology Fellowship program. She serves on the editorial board of PEDs in Review as the Allergy and Immunology Editor and on the editorial board of the Annals of Allergy and Immunology.
Speaker 1 (01:21)
She serves on the board of Directors of the American Board of Allergy and Immunology and the ACGME review Committee for allergy and Immunology. Her research focuses on Ige and non mediated food allergy, physician well being and anaphylaxis. She has publications in these and other areas. Dr. A. Bingemann is a fellow of the American Academy of Allergy, Asthma and Immunology or, as we call it, AAAAI. The American College of Allergy, Asthma and Immunology and the American Academy of Pediatrics. She co chairs the psychosocial impact of food allergy and food allergy in schools workgroups. She is the chair of the Anaphylaxis committee of the AAAAI. She also serves on the Board of Regents of the American College of Allergy, Asthma and Immunology. We also will welcome Jennifer LeBovidge, PhD. She’s an assistant professor in psychology at Harvard Medical School and attending psychologist in the division of Immunology at Boston Children’s Hospital. She provides psychological consultation for children and families related to coping with food allergies and other allergic conditions. Her research is focused on enhancing patient and family coping with and self management of food allergies and atopic dermatitis. Dr. Lisa Bartnikas is a pediatric allergist immunologist and clinical researcher at Boston Children’s Hospital with a particular interest in pediatric food allergy, especially as it relates to management and school policies.
Speaker 1 (02:55)
She is a NIH funded investigator and her primary research focus is understanding the safety and psychosocial impact of food allergy policies in the school. She is active in the American Academy of Allergy, Asthma and Immunology national organization and created and co chairs the psychosocial impact of food allergies workgroup within the Adverse Reactions to Foods Committee of the AAAAI. Well, we thank you so much for being with us today and for sharing your knowledge and expertise on this important topic. Just the speakers wanted to let you know they had no relevant disclosures to make. And with that, I’ll turn it over to Dr. Jennifer LeBovidge.
Speaker 2 (03:36)
Thank you so much for those introductions, Sally, and the opportunity to be with everyone today. So our learning objectives for today’s webinar will be to discuss developmental aspects of managing and coping with food allergy, to provide strategies for gradually involving children in food allergy management over time and to utilize the food allergy stages. Educational handouts which were created by the American Academy of Allergy, Asthma and Immunology Adverse Reactions to Foods committee to efficiently and effectively provide age appropriate food allergy guidance to patients and families. So we’ll start with the question why a developmental approach to coping with food allergy? And I like to think about this as the intersection of food allergy management and child development. So we know there are pillars of food allergy management that are always important for people with food allergies careful avoidance of allergens and preparedness to recognize and treat allergic reactions. But there are also changes in food allergy management concerns as children mature based on unique safety concerns and new social emotional issues at each stage, as well as changes in children’s understanding of what food allergies are and their increasing ability to play a greater role in food allergy management over time.
Speaker 2 (04:57)
So if we’re thinking about food allergy avoidance, for example, food allergen avoidance, for example, a parent of an active toddler might wonder how am I going to navigate our upcoming family reunion when my child’s allergens are present and everyone’s eating kids are running all over the place? Will my child have a meltdown when they can’t eat what their cousins are eating? While the parent of a school aged child thinking about allergen avoidance might be thinking I want my child to be safe in school and minimize risk for accidental ingestion of allergens like in the cafeteria or the classroom. But I don’t want them to be socially isolated or to feel anxious about their allergens being present. And the parent of an adolescent might be thinking will my child feel comfortable speaking up about their allergies and asking questions about ingredients when they’re out at a restaurant with friends? I want them to take on more independence for allergy management, but are they ready or am I ready for that? So it’s important to acknowledge that some increased anxiety with all of these developmental transitions is common and normal and really particularly any time that families move towards greater dependence on other caregivers such as daycare or school or the child themselves to manage food allergies, that these transitions can be tricky.
Speaker 2 (06:17)
So one key element of this developmental approach to food allergy management is the importance of a gradual, team based approach to building children’s knowledge and skills over time. So what this means is teaching them about their food allergies and why we do what we do to manage them in a way that’s consistent with their developmental capabilities and gradually increasing children’s role in their own food allergy management over time with continued support of their parents and caregivers. So we’ll talk more specifically about ways to do this later in the webinar. So really, the goal is, by the time kids are doing things like going off to school or managing food allergies, when they’re out with their friends without an adult present, both the child and the parent will feel more confident. And we think this gradual approach increases safety, decreases anxiety and increases confidence, improves quality of life for caregivers and children. So, really briefly, I wanted to talk a little bit about the inspiration for our Food Allergy Stages Educational Handouts that we’ll be introducing to you today. So, as many good projects are, this project was really inspired by a conversation with a parent.
Speaker 2 (07:30)
I was speaking with the mother of a three year old with food allergy, and she was looking for some guidance on how to help her daughter understand her allergies before she went off to school. But she wasn’t really sure what her daughter could understand, and she didn’t want to make her fearful. So these were great questions common among parents of children this age. And she also shared that she and her daughter were part of a playgroup for families of children with food allergies. And she asked me, can you direct me to a resource somewhere online specifically tailored to issues of preschool children age children with food allergy that she could share with the other parents in this play group. And there are a lot of great educational resources out there about food allergy management and research tells us that these resources really can improve family quality of life. But I drew a bit of a blank when I was thinking about resources specifically tailored to this age group or where I would send families if they asked about a specific resource for parents of infants or school age children or teens. So I reached out to my colleague at Boston Children’s, Dr. Bartnikas, who was one of the chairs of the Psychosocial Impact of Food Allergy work group through the AAAAI. And I threw out the idea that maybe there was a need for something like this roadmaps for families at different developmental stages. And she quickly agreed and emailed her co chair, Dr. Bingemann. And before we knew it, we were submitting a proposal to the AAAAI to see if could we make this happen. So we encourage anyone who’s interested in further information about the development of the Food Allergy Stages handouts to see our recent workgroup report in the Journal of Allergy and Clinical Immunology and Practice. But for now, I just want to highlight some of our underlying aims for this project. First of all, we wanted to create a resource that was reliable and evidence based. So we know that families commonly look to the Internet to find food allergy related information. But it can actually be pretty tricky to determine which sources are reliable, which can inadvertently increase stress or potentially compromise safety and quality of life. We wanted an underlying focus on balanced coping with food allergy. Parents will often express they want their child to take food allergy seriously, but they don’t want them to feel frightened or anxious.
Speaker 2 (09:47)
They want them to be safe and also make sure they’re socially included. So to balance these concerns. So our goal is to give families information and tools to help them effectively and confidently manage food allergy and to directly address common psychosocial challenges around food allergy management at each developmental stage. We really wanted to include practical strategies and tips that families could use in everyday life and to provide roadmaps for educating kids over time. So we tried to include specific examples of language families could use that would be understandable to children at each stage of development. And finally, it was very important to us that this resource would be easily accessible online, free to families, healthcare providers and the public and would meet varied health literacy needs. Our project team included a group of allergists and psychologists through the quad AI psychosocial impact of food allergy workgroup and in line with our focus on an evidence based approach. A handout content was based on professional practice parameters and clinical guidelines for food allergy management, published research on psychosocial and developmental aspects of managing food allergy, and the clinical experience of our project team. We had a lot of discussions about the best way to structure these handouts and ultimately we created one handout called Food Allergy Basics for All Ages with information we felt that all families of children, teens, young adults with food allergy would need to know and then separate handouts for each developmental stage. And you can see those stages listed on the right hand side of the screen and we kept the topic headings which you can see on the left hand side of your screen, consistent across each of these age specific handouts, with a few exceptions, such as some specific topics for young adults. So the idea here really was that certain issues would be important across ages. So, for example, avoiding allergens, recognizing and treating reactions, navigating social activities, eating at restaurants, et cetera. But that the specific safety and psychosocial issues to consider, the practical tips and ways to involve children would be tailored by children’s stage of development. And these handouts are caregiver facing or aimed at the parent caregivers a reader. With the exception of the young adult handout, which was written directly for the young adult patient.
Speaker 3 (12:16)
We felt it was important to collect caregiver feedback on the handouts before finalizing them. So 57 caregivers of patients, zero to 21 years with food allergy and two young adults with food allergy reviewed a draft of the handout, the all ages handouts and the handout for their child stage of development and completed an online survey to provide feedback. The majority of participants were satisfied with the length of the Handouts and said they’d be somewhat or very likely to use them as a resource for managing their child’s food allergy. A sizable minority did feel the all ages Handouts were a bit long, so we took steps to edit it down in our revisions. And almost all participants agreed that these Handouts used elements of plain language writing, such as using common everyday language, defining medical terms, and importantly, giving families specific actions they could take. And then we used open ended questions to get feedback on specific information in the Handouts that were either helpful or confusing or upsetting, as well as suggestions for specific additional content to include. And we found that participants particularly valued that developmental focus of the Handouts and information about emotional aspects of coping which might not have been as available in other resources.
Speaker 2 (13:33)
A number of participants felt the Handouts had good content, but were a bit text heavy and really needed some good graphic design to help make them more readable. So we incorporated this caregiver feedback into our final drafts of the Handouts, and we were really fortunate that the AAAAI communications team did an amazing job with graphic design, which we knew was important for readability. And at this point, I’d like to turn it over to Dr. Bartnikas to start to talk to us more specifically about how we applied that development approach and developed the Handouts, and she’ll help us talk a bit about supporting management in our young patients and school age patients with food allergy.
Speaker 4 (14:15)
Great. Wonderful. Thank you so much. So this is a screenshot from the AAAAI website where you can access the Food Allergy Stages Handouts. And as Dr. LeBovidge mentioned, it’s really based on this idea that different skills are needed for managing and coping with food allergies in daily life at different ages. There’s links on the right hand side to the Food Allergy basics for All Ages Handout, as well as a number of the individual age group handouts as well. And as of last week, we’re so thankful and grateful the AAAAI was able to translate all of the Handouts into Spanish. So there’s a link for the Spanish Handouts as well. And if people want to take a screenshot of this page or jotted down or I think it will be included in the chat for this meeting, I put the web addresses to access the AAAAI Handouts in English and then as well as to access them in Spanish. And I just wanted to mention also that what I do when I’m in clinic or talking to patients is if you just go into Google and type AAAAI Food Allergy Stages, you get taken right away to this website.
Speaker 4 (15:34)
So, just reviewing what Dr. LeBovidge had mentioned. These are the key topics that were covered in the handouts teaching children about food allergy allergen exposure,how to read labels recognizing and treating allergic reactions, managing food allergies at home and eating out at restaurants. Educating other caregivers. Managing food allergies in a variety of childcare or educational settings, including school and college navigating social activities supporting children’s self esteem managing anxiety and feeling confident and preparing children for medical visits. So in these next few slides, I’m going to talk about the food allergy stages handouts for the younger age groups, and we group them together here into babies, toddlers, and preschoolers. And the theme of these age groups are supporting parents of the active and curious. So, starting with this age group, I wanted to talk about some of the key concepts that come up if you’re a parent or a clinician taking care of patients in this age group and that we also go through in our handouts. So children at these ages are active, curious, and definitely need careful monitoring. Children really pay attention to what adults do and learn by imitation and play. Parents are their key role models.
Speaker 4 (17:02)
And your child is watching. They’re watching how you prepare their food, how you react, if there’s a reaction, and basically how you manage their food allergies throughout the day. Daily routines are so important and give children a major sense of security. And it’s really important to have simple and safety focused language about food allergy to help the child feel confident and not feel worried. Caregivers at this age are primarily responsible for food allergy management. And when parents follow consistent food allergy management routines, children learn that this is an important part of daily life. There are some challenges in this age group. It’s common for parents to feel overwhelmed, frustrated or worried at times when a child is first diagnosed with a food allergy. And, as Dr. LeBovidge mentioned, even during various times of transition as well. Specific concerns that parents may have may be around introducing new foods, monitoring for allergic reactions, especially in children who are still learning how to speak, who may not be able to describe allergy symptoms. They might not be able to say, my throat is a clea+r, my tummy hurts. There’s also concerns about accidental exposures at a stage where children frequently are putting their hands in their mouths or putting toys in their mouth.
Speaker 4 (18:30)
So typically we say that you have to eat or ingest a food to have a reaction. But if children are chewing on toys and touching and exchanging toys, that might be a way that food from one child could get passed into the mouth of another. Child concerns can limit family social interactions and also might impact choices about leaving the child in the care of others, whether it’s with a babysitter, another family member, playgroup, or even deciding if you should send your child into daycare. And as parents learn more about managing food allergies, they can feel more confident and will develop routines that can help keep their children healthy and safe. What I love in the handouts is what we’ve utilized for these management tools are a lot of quotations and words you can use to explain food allergies to your child. So when teaching children about food allergies, doing things like using a calm tone, simple terms, and focusing on safety routine so saying you’re allergic to eggs. Eggs can make you sick. Or we have our medicine bag, so now we can go to the park. It’s also important to explain routines out loud so that children will learn they are important.
Speaker 4 (19:46)
And doing this even before children are old enough to be able to have a conversation back with you about it. Just hearing it and going through those motions can be really helpful and instructive. So you can talk through what you’re doing, saying, we read the label so we know there are no eggs in these cookies. They’re safe for you to eat. Other things are teaching your child not to share food. And parents can practice language with older toddlers directly or through play so that children can feel confident and prepared for these situations as they come up. So practice with them and have them say back to you, no thank you, I have allergies. You can also support children’s self esteem by helping them label their feelings, giving simple choices to increase their sense of control, and praising them for following routines. So if your child seems unhappy or sad or mad at a situation, you can help them say, it seems like you’re mad. You can’t eat what your brother is eating. Let’s find a food that you enjoy that is safe for you or giving some choices. So Daddy brought snacks to the park.
Speaker 4 (20:53)
Would you like the crackers or the fruit? Or when their child is washing their hands, which we know is so important for food allergy management, say, great job washing your hands before you eat. So now we’ll move into the slightly older age children, the school age children, and the theme we have for this is emerging awareness and involvement. And we include in this are early grade school and late grade school children. So concepts at this age are that caregivers are tasked with developing food allergy management strategies to enable the child’s safe participation in activities outside of the home. Children at this age are working on building a sense of control and independence that starts to separate from their parents. Children can understand a lot more about food allergies and follow simple safety rules. And this is a great age to involve the child in food allergy management with parental supervision. So tying back to what Dr. Lobovich was saying about this gradual involvement in food allergy management and gradually including children in this management, helps them build the skills and confidence they will need to manage food allergies independently in the future. There are challenges in these ages as well.
Speaker 4 (22:10)
So transitions that we talked about, such as entry into kindergarten or changing schools or starting camp that can require reliance on third parties and increased child responsibility for food allergy management. And those can be sources at this age mainly of caregiver anxiety, but sometimes for children as well. Children at this age, as part of their normal development, are developing a greater awareness of differences than peers. It’s normal at this age for children to notice differences in appearances or gender differences. But food allergy differences also become part of those things that they notice. And it’s also this concept of special to different transition. So an example that I think I learned from Dr. LeBovidge was the child going to birthday parties when they were younger got to bring their special cupcake that mom or dad made them and that was really special to them and they brought that because of their food allergies. But now what’s special becomes different. Why can’t I have the same cupcake everybody else is eating? So we’re helping to manage those feelings. And at this age you need management strategies that emphasize both safety and social inclusion to foster confidence. At this age, children may experience increased anxiety about accidental exposure to their allergens or allergic reactions in situations that they previously navigated with confidence.
Speaker 4 (23:34)
There are a number of things that could contribute to these increases in anxiety. Part of it is a greater cognitive awareness of the risks for food allergy and reactions. But there can also start to be misperceptions about the level of risk associated with certain scenarios or casual contact of touching or breathing in an allergen. And then greater independence. And food allergy management can also make children feel more cautious or anxious. And starting at this age, children may be at increased risk of bullying or teasing by peers, particularly in school. And these are really important conversations for parents and health care providers to have for children – have with children, and just to understand that bullying should never be tolerated. So we have a number of management tools that can be helpful for this age. So teach children about food allergies in the same way you talk about other safety issues. In the same way you talk about things like crossing the street with calm, safety focused language, not focusing on the worst case scenario, so saying things like eggs can make you sick. We read labels and keep your medicine with us because these strategies work really well to keep you safe, or just like we say on safe paths.
Speaker 4 (24:50)
And always wear a helmet when we ride a bike. We read ingredient labels and always keep your epinephrine auto injector close by. And also teach and reinforce to children why reading ingredient labels is important. And as they learn to read, let them practice the label reading with you. As a parent of a five year old and a six year old who are learning to read, I know how important that is to include them in the reading. You can have the food allergy and be a sight word that they try to find, make a little game out of it. So saying things like, we read the label so we know there are no eggs in these cookies. They’re safe for you to eat. It’s also really important to be consistent with and reinforce important rules and routines. This gives the children a sense of confidence and helps them expect what is to come next. So reinforcing, if there is no label, we can’t eat the food. Or saying things like use the bathroom, grab your coat and make sure we have your epinephrine auto injector. Also continuing to role play or practice common language ahead of time for scenarios so that children will feel more confident.
Speaker 4 (25:55)
So preparing for things like going to eat at a restaurant, you can have your child practicing with you. Practice ordering and saying, I have food allergies to wheat and soy. Or practice going on a playdate or being prepared for what to say at a birthday party if they’re offered food, saying something like, no, thank you, I have food allergies. Or I have to ask my parents. It’s also important to help children return to usual allergy management routines after they do experience an allergic reaction. You can talk about parts of the emergency plan that worked well, as well as talk about anything you might do differently to improve on and to stay safe in the future. So saying things like, you did the right thing when you told me your throat felt tight or your auto injector stopped the reaction quickly. It’s also important to know that a lot of children can interpret scenarios of an allergic reaction where there’s loud, excited voices talking or maybe a lot of people coming by or an ambulance or trip to the hospital is something really scary and might start to worry that they were bad or they did something wrong.
Speaker 4 (27:00)
So you’re really using that as a chance to debrief with your child and listen and provide reassurance. And then also supporting self esteem by letting children know it’s okay to feel frustrated or sad, encouraging them to come to parents if they feel upset, and praising them for making good choices. It’s important for children to know that you can’t fix everything, but you are there to listen to them and to do your best to try to understand. So saying, I know it was hard when you couldn’t eat the snack at soccer. I was proud when you said, no, thank you. Let’s get a safe treat now. So next I’m going to transition to Dr. Theresa Bingemann, who’s going to talk about our food allergy handouts in the older age groups.
Speaker 3 (27:44)
Thank you, Lisa. So my task is to discuss the teens and young adults and as the subtitle says here, their transition to independence. And you see there is a wide age range here, but we group them together because there’s a lot of overlapping content. And so when you think of adolescence the first thing I think of is a focus on friends and social relationships. Teens are really thinking about, do I fit in with my peers? And that is really all consuming at times. And as a result, that whole idea of being different that Dr. Bartnikas has just mentioned, that they may feel self conscious about their food allergies or embarrassed to speak up. And this is where practicing at home and with families or when you go out to dinner can be really helpful. So you may have taken the lead for years and said to the wait staff, my child has milk and egg allergy, and talked to them about cross contamination, but now it’s a good time to have the Tween or teen practice that wording. Also, depending on how you talk about food allergies, they’re going to feel differently. So if you talk about the food allergies in a manner of which you can handle this, you’ve been practicing, you’ve been building up to this, we’re supporting you, they’re going to feel much more confident than if they get a message of, oh, you can’t handle this.
Speaker 3 (29:26)
And so we really need to be cognizant of the words we use. And I like to tell them whenever I see teens, is that we want you to get more involved. Then I’ll often ask them about you’re going out now and your parents aren’t always there. Are you bringing yourself injectable, Epinephrine? Are you talking to the parents about it? What do you feel comfortable talking about? What do you feel you still need your parents to help with? And so, as I mentioned, they’re going to these less structured environments and there may have been allergy free tables in the past, but perhaps not anymore. And they spend far more time away from adults and maybe at sporting events and maybe going on class trips or just out with friends. But at this age, they also have a greater awareness of risk and sometimes that can lead to worry or even hyper vigilance. So we have to balance the awareness and ways to stay safe, but not take it so far where they’re going to be all consumed and afraid to do things. And so, for example, one of my son’s friends came over and he had multiple food allergies and I had allergy free snacks for him, but I realized every time he came over, he never ate, no matter if I let him read the label or told him what it was.
Speaker 3 (30:53)
And his mom and I talked about it and she said to me, you know, I’ve never asked him about that. I think he’s just avoiding eating if he goes out. And so asking teens about things like that can be really helpful. The other thing that happens is they have lots of new experiences that may lead to questions and concerns that they’ve never even considered. So asking about those things and finding out what they’re comfortable with and. What they’re not comfortable with. Across the spectrum, there really is a wide variety and people become comfortable with things at different times. And remember, the adolescent brain is not fully developed and while they are getting better and better at problem solving and organizational skills, they still need help with that. And so it can work best if you are clear about management expectations, but you collaborate on how to reach those goals. And as you know, teens are pulling away, they’re looking to exert their independence and so we have to be respectful and patient in these conversations. The other thing that’s really important is that making sure teens can understand and use their Anaphylaxis management plan. You know that the highest incidence of food allergy fatalities is in teens and part of that may be risk taking behavior, part of that may be that they don’t carry their Epinephrine, part of that may be that they don’t know how to use it or are not willing to use it.
Speaker 3 (32:21)
And so these are really important questions to discuss with your teen. Also, it’s important that you balance parental desires with what the teens and Tweens may be comfortable with. So for example, a topic that comes up for me a lot is whether and when a child self carries their Epinephrine at school. And often in the Tween years, the parents will say, I’d really like you to carry your self injectable Epinephrine. And occasionally I’ll look over at the child and they’re shaking their head going, no, that’s not something I’m comfortable with. And so it’s important to have a discussion about how are you going to keep yourself safe, but also not overstep any limits that are going to make a teen uncomfortable. And this goes back to having open and ongoing communication and I find that it’s helpful to ask questions to understand their experience and concerns. So when kids come into the office, and I encourage parents to do this too, I often say to them, well, what do you do when you go to a get together and there’s food present? And do you read labels? How often do you read labels? Do you do it all the time?
Speaker 3 (33:42)
Do you do it some of the time? I try to always ask, are you comfortable with the plan at school to make sure they’re happy with however things are structured at lunch, for example, to make sure that they always get to sit with friends, I also encourage them to ask about ingredients and speak out about their allergies when out with friends. And I find sometimes teens are only comfortable talking about this with one friend and some teens will even ask that friend to help them out with this. I’ve also found when I’ve been asking about situations in the office, sometimes teens will bring their friends to their appointments with them. And I found that their friends are more than willing to wrap them out if they’re not carrying their epinephrine with them or not making people aware of their allergies. And some of these good friends will speak up at restaurants on behalf of the teen, even when the teen is reticent to do that themselves. An important area, of course, is epinephrine. As I mentioned earlier, it’s important to see what they’re comfortable with and where you can help them and help them understand the importance of carrying their epinephrine, especially when they go out with friends, but to make sure they know how and when to use it.
Speaker 3 (34:59)
Remember, many teens may not remember having a reaction, and those are the kids that often can have risk taking behavior. So describing what that was like or what they could expect if they had a reaction, and then also reviewing what symptoms they would indicate, needing epinephrine and confirming that they’d be willing to use it is really important. So now we’re going to move on to the young adults. As mentioned previously, this area has two sections that aren’t in the younger age group, and that’s managing food allergies at college and preparing to manage your health care. So young adults should be able to take primary responsibility for their day to day food allergy management. This is what we’ve been working towards with that graduated responsibility. And it’s important though, that we still provide support. Remind them that they are not alone, that you’re here to help, and that family, friends, roommates can really be a great support, and that anything when it’s new may feel a little uncomfortable, but they will feel more confident over time. And if they have questions, you or their physician will be glad to help. So one of the biggest things is preparing to manage your own health care.
Speaker 3 (36:30)
I can say my eldest just turned 18 and when I got kicked off my portal access and couldn’t send messages for him, he was a little upset and said, how can I give you access again? Then he realized that was more of a hassle and so he’s gradually sent messages on his own. So it’s important to talk about the skills a team will need to take the lead in their health care. And so we really want them to prepare for their appointments, to think about what questions they might have, to think about areas that haven’t previously been discussed. And the most common ones tend to be dating, kissing and alcohol. And so it can be useful for the individuals of this age to consider attending appointments alone, or if they attend, with a parent or guardian to make sure they have one on one time with the allergist. And I’ve even had a few parents of teens saying, we’re going to leave the room now so you guys can chat sometimes I’ll also just bring up the topics and everyone squirms a little, but at least I know they’re being addressed. And then we also encourage our patients to think about strategies and how to remember to refill prescriptions, whether that’s their epinephrine or other men.
Speaker 3 (37:55)
And if they’re moving off to college, they’re going to want to find out where the nearest hospital or medical facility is in case of an emergency. So when we think about managing food allergies at college, it can be very helpful to contact the disability services office to help with knowing your options at college and finding out how food is prepared in dining halls and also how students access meal information, allergen information rather, and what special meal options may be available. I typically recommend people do this while they’re looking at colleges and then that way they have that information before they make their final decision. It’s also important to find out what are the emergency plans and dining facilities and is there housing and roommate options. So I have some patients that have enjoyed living with someone with the same food allergy that has helped them felt supported and they knew that they could work together to keep each other safe. I’ve had other kids this age that choose to try to get a single or others that try to get a place where they can cook for themselves. And this all varies by individual comfort and how many allergies someone has.
Speaker 3 (39:23)
But having these conversations upfront can lead to a lot less stress on the back end. It can also be helpful to find out if the resident advisor is trained on managing food allergies and if they are, it can be really helpful to have your RA even help you when you’re talking to your roommates and you can discuss ways of keeping your living space safe and how you want to handle an emergency. So I wanted to recap why we think the stage based handouts are important. And the reason is we feel that ongoing education is important and as you know, different challenges occur over time and as children age they see differences between themselves and others and are becoming more independent. And this is going to lead to further questions that maybe they were too embarrassed to ask when they were younger. And we find that this creates a roadmap to independent care. And as we mentioned earlier, by taking a graduated approach to taking more responsibility that leads to increased confidence, safety, improved comfort, it improves self efficacy and quality of life. We wanted to put up the slide that shows the links to the handouts again so you can access them in English and Spanish.
Speaker 3 (41:12)
And then we wanted to finish by telling you how to use the handouts. So for physicians we can use the handouts during the visits by either reviewing them with patients. We’re working on getting a QR code so they can be posted in the room and people can access them that way. We can also put them in a link in the chat, say for telemedicine visits. Another option is to develop smart phrases where you can drop these patient instructions for families. They can be used online, whether it’s just for their own personal use or to help educate others that may be watching your child, or like was mentioned earlier, maybe for a playgroup so everyone can be on the same page. And then we wanted to leave you with resources for further management. So if you go to the basics handout, at the end there are resources for further management regarding all of these topics like label reading, recognizing and treating reactions, professional and patient support organizations on finding a trained mental health professional, food assistance and reduce cost programs and schools and childcare settings. Because what you need today is likely going to be different than what you need tomorrow, and you might find a different resource more useful on another day.
Speaker 3 (42:45)
And our goal with these resources was really to empower patients and families to improve their confidence and their quality of life. However, if you’re using these and you’re still anxious or depressed or having a hard time managing this, it’s really important to reach out to a trained mental health professional. I wanted to acknowledge the American Academy of Allergy, Asthma and Immunology for supporting this project and their graphic design. And below you see our Food Allergy Stages project team led by Dr. LeBovidge on the left. And I won’t go through everyone’s names, but a lot of people were involved in vetting the information and trying to do the best for our families. And most importantly, we thank the caregivers and patients who reviewed the handouts and gave us feedback to improve this resource.
Speaker 1 (43:49)
Well, thank you so much. This has been great information. Before we go on, I would just like to go back one slide and just say that we’ve been working in food allergy for years and years and years and years, and these are some of the brightest minds in the work of allergy in our country. And I guess I would just like everybody to just have a sense of some of the best of the best, have worked hard to put this together and that’s just a very, very exciting thing. So I thank you so much. So our first question is, are any other languages included in the resources other than Spanish? If any of you would like to jump in, please feel free.
Speaker 2 (44:41)
This is Dr. LeBovidge. Unfortunately, right now we only have Spanish, although we’re very excited to have Spanish. But that is certainly something that we would love to see them translated into other languages and can keep that on our radar screen as a potential project for the future.
Speaker 1 (45:00)
Thank you very much. The next question is a fascinating one. How would you recommend handling education for a patient with autism and a food allergy in their family? They may not always be able to verbalize symptoms like their peers. They’re also more prone to increased anxiety or tantrums. Who’d like to jump in and take that one?
Speaker 3 (45:23)
I guess I’ll start with that. So I think that the first thing that I would say is that 90% of food allergies are going to have cutaneous symptoms. So skin findings. That being said, I kind of think about kids that may not be as verbal as some of our younger children, right? So we look for changes in behavior. We look for that deer in the headlights look. When I’ve done food challenges in the office, I’ve had kids that really didn’t want to be poached. So they tried pretending they were not having a reaction, but invariably there was a distinct change in their behavior. And then after we treated the reaction, they said, yeah, I feel much better now. And so I think we can use behavioral cues, think we can use if they look scared or not. Skin findings. And I also defer to parents. I think I like to look at the likelihood of exposure to something. But also I think parents of course, know their kids best. And if a parent says something’s wrong and I think this is an allergic reaction, I always defer to the parents because, well, they know their child’s best.
Speaker 4 (46:40)
I think along those lines, I completely agree with everything that Teresa said. I’d also say that those are really important conversations to have with the school nurse, as well as saying, this is what my child looks like if they’re having an allergic reaction. This is what my child might say if they’re having an allergic reaction. Just to cue everyone. And similarly, how you might do for a child, again, who is pre verbal or not quite able to explain their symptoms in the same words as an adult is for any illness, just so nurses and teachers at school can be aware.
Speaker 2 (47:21)
I would just add that we can think too about developmentally where the child is, and that the ages that we gave as guidelines on these stages. Families might want to think about where does their child fall developmentally? And think about how do you teach a child, regardless of their chronological age, but based on their developmental stage? What are the routines that you’re going to follow in your house for safety? Or what is the orders, the language that you’re going to use around food allergy, depending on what your particular child understands? And these can be great conversations to have with your allergist or pediatrician or the school.
Speaker 1 (48:02)
I appreciate the point you just made about chronological age versus developmental stage because I think that’s so difficult to manage. The Nymphs, I mean, I’ve met some very young children who could manage their allergy, give their epinephrine and everything, and some high school kids that just aren’t there. So I think that’s a really important thing to keep in mind is that you have to look at the whole picture. Okay, so the next question is, are physicians talking to parents and caregivers about the importance of these resources?
Speaker 4 (48:37)
So I can start with that. These handouts were just finalized I think probably can correct me, Judy or Theresa within the past month and came on the AAAAI website. So we’re rapidly trying to incorporate this into our own practice at Boston Children’s Hospital and doing these webinars is one way that we really want to help make people aware of this fantastic resource, getting the QR code. So we’re trying to get the word out through as many avenues as we can as well. But I think that’s really important because we are so proud of this resource and want to make it available to as many people as possible.
Speaker 1 (49:27)
Absolutely. Theresa, did you want to say something?
Speaker 3 (49:30)
I was just going to say we do a yearly webinar on an assortment of allergies for patients and families. So this is going to be something that I bring up during that and we’re hoping to spread the word through the AAAAI as well.
Speaker 1 (49:54)
But I agree today is a big day for getting the word out and hopefully those of you that are listening can also if you’re in a situation where you deal with people that are trying to manage food allergies in their families, that you could be able to help provide them with the information about this resource. And that’s kind of the next question is can we be provided with links to the resources? And we have someone that’s providing technical support today who has copied the link and put it in the questions box. So if you need to find that you’ll find the link to the resources, the other thing you can do is we will have a PDF of the slides posted on our website, you can look there to get the link or you can listen again to the recording and get the link that way as well. So there are a lot of options for that.
Speaker 4 (50:46)
And I’ll reiterate, I’m terrible with remembering long links and I’m prone to introducing typos. So if you just go to Google and write AAAAI food allergy stages or even probably just food allergy stages, this will be the first or one of the first links that will come up.
Speaker 1 (51:04)
When you hear us say AAAAI it’s AAAAI. It’s four A’s. AAAAI. So don’t write in quad. It’s four A’s and an I.
Speaker 2 (51:17)
And I will say when Caregivers completed our survey about the handouts, one of the points that came up that a number of them said is that these would be good resources to share with other people caring for their child, watching their child. So for example in school settings or daycare. So we certainly encourage those of you who might work in those settings. We hope maybe they may also be useful either to share with families through those settings or also to share with other staff who may not have as much familiarity with food allergy.
Speaker 1 (51:56)
Okay, the next question is what are your thoughts about safe food lists.
Speaker 4 (52:04)
Someone.
Speaker 1 (52:05)
Could jump in on that one.
Speaker 3 (52:08)
I guess it depends on what they’re used for. So if you’re making a safe food list, say, for Grandma to feed Johnny, that’s one thing. But I think you have to be careful with packaged foods, for example, or things that the ingredients may change over time because you have to recheck them each time.
Speaker 4 (52:34)
And I would also say I pause too to see because I want to make sure I understand the question. I’ve had it come up sometimes for me where families will say, oh, the school wants you to provide a list of safe foods for the child. And I’ll say those lists always make me a little nervous as a provider, because from a safety perspective, I always feel like it’s better and safer to say, these are the things you cannot have, and clearly state, because otherwise a safe food list, I feel like, can’t be all encompassing. And then you risk having people make assumptions about what it is or isn’t on the list. So I prefer to write the foods that you cannot have rather than kind of writing a safe food list.
Speaker 1 (53:25)
Okay, thank you. Our next question is, do we need permission to copy these handouts for staff and teachers?
Speaker 2 (53:34)
I think the answer to that is no, that they’re freely available from the website. So whether someone downloads them themselves or you make a copy, we’re really, really excited for them to get out there as much as possible.
Speaker 1 (53:53)
At the network, we always say, please go ahead and download our resources and hand them around. That’s where we want them. We want them in people’s hands. And I’m sure you feel that same way about this resource. I just want to tell you thank you for answering the question about the safe food lists. The person who wrote the question says, you just validated my gut wrenching concerns. Thank you. So I know that this is making a difference to a lot of people today. We have one last question before we’re done today, and this is from a school nurse who says, how do we handle a child who wants to be more independent but the parent isn’t ready and doesn’t want the child to be more independent?
Speaker 2 (54:35)
I always think that as a psychologist, when anyone a child is a parent is feeling a little anxious about a transition, I always like to think about what are steps we can take to do this gradually and think, with the parent around what their concerns might be about the child taking on more independence, thinking about where the child is in terms of readiness and what support is available there in the school setting. Because we always want kids to know they’re not in it alone, even if they’re taking on more of a role. So I think some open communication here about everyone’s goals for both the child safety and the child’s increasing sense of self efficacy would probably go a long way towards identifying how you could help the child reach that goal, but also feel confident that the child will be safe.
Speaker 1 (55:34)
Oh, that’s great. Thank you so much. Well, we have gotten to every single question today, which is great news. I’d like to thank our speakers today. This was just such great information and I know it’s going to make a lot of difference to a lot of families, but also to a lot of caregivers as well. So thank you so much. And I’d like to thank our listeners for joining us today. At this point, please download the certificate of attendance from your control panel. If you have any difficulties, please email us in the link in your emails. Please join us for our next advances in allergy and asthma webinar as we look at atopic dermatitis which is also known as Eczema and how it presents in skin of different colors. This webinar will be on October 27 at 04:00 p.m. Eastern time. You can register for this webinar on our website at Allergy Asthma Network. Scroll to the bottom of our homepage to webinars. You can also view our recorded webinars from this page on our website. Visit our website for quality guidelines based information and resources on allergy and asthma. I would also like to ask you to stay on the line for two to three minutes to complete the evaluation survey.
Speaker 1 (56:49)
We really do use this information to inform our future webinars. This is Sally Schoessler for the staff at Allergy and Asthma network. Thank you again for joining us today for an important discussion on the ages and stages of food allergy management as we all work to breathe better together.
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