This webinar was recorded on Tuesday, July 19, 2022
Families that live with food allergies have unique issues that may influence their quality of life and mental health.
This presentation will discuss ways to help you help families to manage food allergies effectively and develop strategies to overcome barriers that may be influencing food allergy management.
- Dr. Gianine Roseblum, NJ Licensed Psychologist
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.
Families work 24 hours a day, seven days a week to keep their family members safe from food allergies. Today we’re going to look at the psychological aspects of coping with food allergies and look at some of those strategies that are there to help families. My name is Sally Schoessler and I’m director of Education for Allergy & Asthma Network. Allergy & Asthma Network, as you can see on the next slide, is a grassroots organization that was begun over 35 years ago by a mom who knew that other mothers like her needed resources and support.
Our mission is to end the needless death and suffering due to asthma, allergies and related conditions through a fourth prong approach of outreach, education, advocacy and research. Today it’s my pleasure to introduce our speaker, Doctor Gianine Roseblum. Doctor Roseblum received her doctorate in psychology from Rutgers University and is a licensed psychologist in New Jersey. She has almost 30 years of experience in clinical practice and psychological research and teaching. Currently in private practice, Doctor Roseblum provides individual, family and group psychotherapy across the lifespan, with a focus on recovery from complex trauma, developmental trauma, PTSD, and dissociative disorders in addition.
She treats her depression and anxiety and has unique experience in helping individuals and their families cope with life threatening through the allergies, complex medical issues and diagnosis of genetic disorders. She’s a member of the American Psychological Association and the New Jersey Psychological Association. Doctor Roseblum is the mother of a young adult with multiple food allergies, so you can be assured she knows what she’s talking about. She’s been teaching about food allergy and anxiety since 2009 She served as a consultant to the Allergy & Asthma Network and developed its first of its kind training program on food allergies for mental health professionals, and we’ll be talking about that as we go through this program.
She served on the Outcomes Research Advisory Board and psychosocial issues. Task force for food allergy research and education. She has given webinars and written about food allergies for scholarly publications and online outlets. Thank you so much for being with us today, Doctor Roseblum, and for sharing your specific perspective. That’s not easy to say on this and other issues related to food allergies. Thank you for being with us today. Thank you so much, Sally. It’s a pleasure to be here, and I’m delighted that so many people are joining us here today.
I’m going to give you a little overview of our program. We’re going to start by discussing some foundational food allergy knowledge. Some of this may be familiar to those of you listening, but it’s just helpful for those who are unacquainted to give a little overview. We’re going to talk about some things to help you understand the burden of living with food allergies. If you’re not from a food allergy family or have food allergies yourself, it’s really important to kind of grasp the psychological impact and the daily life burden.
We’re kind of talking about coping with allergic reactions when they occur. And also a little bit about intervention. So how I do my work, for example when I’m working with food allergy individuals and families. So those foundations, I’m going to go over this somewhat quickly. And the network obviously on their websites has tons of information if you want to just know overviews about food allergy in the United States. So food allergies are not rare. One in 12 children have food allergies.
This is not an inexpensive or easy, cheap disorder to live with. The costs of medical visits, the costs of specialty foods, the costs of epinephrine auto injectors all create a significant financial burden to families. In addition, there’s a lot of comorbidity. Almost a third of kids with food allergy also have asthma, for example. And finally, food allergies are life threatening. And unfortunately, 150 to 200 people die every year from food allergies. And that may not look like a vast number compared to the numbers of people with food allergy across the board, but really with a preventable condition every with a preventable death.
Every food allergic fatality is one too many. Get my slides going here. So, as you may know, these are the foods that are the most commonly responsible for food allergies. They’re considered the top nine food allergens and peanuts, tree nuts, wheat, dairy, fish, eggs, shellfish, soy, sesame. If you think about how ubiquitous these foods are in our diets, how hard it is to find an environment devoid of any of these allergens, you can start to imagine how difficult it would be to avoid them completely, which, as we’ll talk about, is really the name of the game.
In managing food allergies. In addition, there are many other foods, and really any food can become a food allergen to an individual. But many others cause pretty serious allergic reactions. You can see in the list here mustard mollusks like oysters, buckwheat, celery, Lupin all are known to cause serious allergic reactions. It’s important to remember that any food allergic reaction can be life threatening. They don’t. They aren’t always life threatening, but it is always possible. Having a mild allergic reaction one day doesn’t mean the next reaction will be mild and vice versa.
There’s a real unpredictability element when it comes to food allergies. Also important to know that tiny tiny amounts of food protein can trigger anaphylaxis which is the life threatening reaction in food allergy crumbs, tiny crumbs, dust. A speck of flour for a really sensitive individual can become a life threatening exposure. As we’ll talk about in length, management is entirely behavioral because we need to exert complete avoidance of the culprit foods in order to prevent food allergic reaction. Treatment at this point, once an allergic reaction is begun, has to do with administering emergency epinephrine via injection. Food allergy families are taught epinephrine first epinephrine fast because as you can see in item 6, delayed administration of epinephrine is correlated with higher risk of death, as is uncontrolled asthma.
And unfortunately, the risk of death is higher in adolescents and young people, young adults. I could do a whole webinar and why that is true, but we’ll just take it at face value for today. So what are we talking about when we say self management of food allergy is 100 % behavioral? It means that preventing an allergic reaction is based on what an individual or a family does to keep an allergen out of one ‘s diet. So there needs to be a level of really strict control in all food containing environments. And as you can imagine when you think about your day, most environments contain food.
You have to avoid not only the food itself being eaten, but you have to avoid cross contact between the safe food you might be eating and the culprit food. Cross contact can occur during food preparation, during food storage, during food serving it can be the spatula used for a cheeseburger, then is used for a non cheeseburger and that little speck of cheese transfers from one burger to the next and the person with the dairy allergy can have an allergic reaction.
We also have to think about non-food sources of potential allergens. When my daughter was a little girl, she was in a dance routine. They were using a sort of fairy dust, little glittery dust to sprinkle on the kids to make them look glittery. And that dust actually contains some walnut powder in it and she had a reaction from that. I knew another child who was using juggling balls that had crushed up nut shells in them, and the dust emitted from those juggling balls caused an allergic reaction. Cosmetics, soaps.
Craft supplies, vaccines, medications, all can contain potential allergens and have to be controlled and investigated. Food allergy is unusual because it is one of the few medical conditions in which the individuals themselves or their caregivers are responsible to be first responders in the case of a medical emergency. What does that entail? Well, first, in order to respond, we have to know that there’s a problem. So food allergic families are expected to be able to diagnose early symptoms of anaphylaxis. They’re responsible for providing self injection of emergency epinephrine and seeking medical attention right away. Also to, you know, be regularly carrying at arms length at all times to epinephrine auto injectors.
So just having that responsibility for carrying your medication on you at all times, so being able to know what’s going on in your own body or in the body of a child, these are huge responsibilities that are borne by every food, allergic family. And finally, because as we talked about, pretty much every environment contains food. And if you’re going to want to eat outside your home to eat foods you haven’t prepared and carried with you yourself, you’re going to have to be interacting and advocating for yourself with all of the people responsible for preparing or serving food to you. And you can see this long list of environments that don’t just include food service environments like restaurants.
They include bake sales they include. Priority events. They include airplanes. They include, you know, fun events with friends, weddings, bar mitzvahs, you name it. Food is there, and if you’re going to eat, you’ve got to be practicing self advocacy in those environments. So when you start to think about how much of our daily life involves food, you can start to imagine the responsibility of managing food in all of these situations, from meal planning to food shopping, food preparation, obviously in the kitchen serving food as I mentioned, storing and even cleanup. So there are videos out there teaching families how to clean up properly if they have a food allergic, peanut, allergic child and are serving peanut butter,let’s say to other family members in the household, you don’t want any residue of that peanut butter on a knife or fork, a spoon, a plate, a dishrag, a sponge. Really thinking thoroughly about how cross contact might occur starts to let you understand the numbers of things that are impacted by food allergy on a daily basis. So if you’re not a food allergic person or the caregiver to a food allergic person, this exercise might help you internalize and build some empathy for what it’s like to live daily with food allergies. So I would invite you to choose one of those top 9 allergens that we reviewed earlier. Plan a meal without that allergen present.
Go to the store and commit to not buying any foods containing that allergen. And what that means is that you must read every label on every packaged food you purchase, every pre prepared food you purchased in its entirety before you put it in your cart. So you’re absolutely sure you’re not going to bring that allergen into your kitchen. You can also choose a non type non top 9 allergen to think about because outside of those top nine, there is not a requirement for labeling in even the cursory way that the top 9 allergens are required to be labeled for.
So what does that mean? My daughter’s allergic to sunflower seeds for example. That means we call manufacturers to find out if there’s any manufacturing cross contamination possibility in the food that we’re going to need, particularly things like goods where there might be, you know, another loaf of bread with sunflower seeds being prepared in the on the next machine over something like that. And now imagine doing that for everything in your pantry. Just think about how challenging, time-consuming, irritating that might be as you’re trying to get a response from multiple manufacturers. And when you have families or individuals with multiple allergens outside of the top nine, that responsibility is pretty huge.
So let’s look a little further into that daily living burden of life with food allergies. What gives us stress? Generally speaking, in psychology, people try to understand generically what is stress, where does it come from? Unpredictability, uncontrollability, the expectation of a negative outcome, and a sense of threat and uncertainty are the characteristics of any event or experience that makes that experience much more stressful. Human beings, mammals, primates in general, will like and appreciate a level of predictability and controllability in their environments.
Because all of those factors we discussed a little bit ago, food allergy contains all of these stressful components in pretty much every aspect. For one of the articles I wrote for a professional journal, I tried to really distill why food allergy is so stressful among, you know, lots of different challenging chronic disorders that are out there, all of which are stressful. When I work with kids and families in my practice, I really notice the difference between the level of daily stress even when their food allergies are well managed, compared to a kid who just has asthma, for example, which is well controlled, or a child or a family with diabetes which is well controlled for example. One of the reasons is when we talk about how food is everywhere. When food feels threatening, that threat feels pervasive. So you’re always in that state of a little bit of anxiety and danger. The level of vigilance required to manage food allergy is very high, and that vigilance requires energy, attention and concentration, all of which are fatiguing and draining and create stress.
We talked about the behavioral control demands. There’s so many things you have to keep track of, so many things you have to control. That is a stressor. And when we described that self advocacy component, that’s all social interaction. So you’re talking with lots of people about managing your food allergies. You’re asking for accommodations, you’re making requests, oftentimes of strangers, to help you in something personal that affects you individually. For people who are super social and gregarious, that might be easy and comfortable.
For people who are a little bit shy, a little bit uncomfortable, a little bit out of practice, that can be a huge burden and create a lot of anxiety and discomfort. In addition to that, unfortunately, there’s plenty of research, evidence, as well as anecdotal reports that there is not a ton of social support out there for people with food allergies. People misunderstand. People dismiss and invalidate. People are disbelieving that food allergies even exist. In addition to which and more extreme, there’s lots of evidence of out and out food allergy, bullying, bullying among children in school settings and other environments, but also bullying among adults.
Bullying between parents on the social media, websites and Facebook groups, for example, that are dedicated to families with food allergies are just replete with stories of sort of hostility, sarcasm, people making food allergies the butt of jokes that really create a high cost psychologically to food allergy families. We talked about that uncertainty, lack of control. If you’re not preparing and bringing with you your own food, you’re not in control of food preparation. You’re on the mercy of the people who are.
That uncertainty can be really challenging. And finally, because we are asked to be first responders in the food allergy world, there’s research that shows that folks are not that confident at their efficaciousness in responding by administering epinephrine, by identifying anaphylaxis when it happens. So their perception of their own skills is low and that creates additional anxiety because the stakes are very high. Food allergy families are aware that this is a life threatening disorder and if they don’t respond properly, there could be a terrible outcome. So all of these add up together to make for a very stressful condition. On top of this, the fact is that our subjective sense of how risky, threatening, or dangerous something is outweighs the objective reality of the danger or the risk.
In food allergy, subjective fear of death far outweighs the actual probability of death from food allergy. Fortunately, the probability of death is very low. It’s certainly lower than the risk of death from a car accident for example, but the perception in the food allergy community can be that the risk is much higher than it is. That is one of the things that generates that sense of anxiety and threat. There are lots of wonderful researchers out there, my colleagues, doing research on specifically the psychosocial impact of food allergy, looking at things like general quality of life, you know, how are people doing when they have food allergies versus families who don’t.
Specific to health related quality of life, food allergy, specific quality of life, stress, anxiety and things that reach the threshold for clinical psychopathology like depression or post traumatic stress disorder. So we’re kind of. On it. And we’re looking to understand this better and then disseminate information to folks like yourselves so that we can bring better and better care to food allergy families and patients. So just as, for example, looking at some of the research findings where a survey of mothers and children with food allergy reported increased anxiety and stress and decreased quality of life compared to control groups.Why? What contributes to a greater degree of stress and distress? Severe the presence of severe allergic reactions or the use of epinephrine autoinjectors.
So we’re looking at that as being related to increased stress and decreased quality of life. When kids have multiple food allergies, a bigger challenge, harder to manage that increases stress. When there are comorbid allergic diseases like asthma, also eczema, that contributes to stress and of course low family income because that contributes to increased stress across the board, decreased quality of life across the board. Food allergy families are no exception. Coming back to this issue of perception. Remember, perception influences are psychology. So whether or not anaphylaxis might have actually occurred, the perception that there was an anaphylactic event increases risk for a poor quality of life and higher levels of anxiety.
Again, that perception that there’s a higher risk of death than there actually is all contributes. So what does that start to tell us? It starts to tell us that we need to intervene on the level of correcting perceptions and helping educate individuals and families to become more accurate in their assessments and that’s going to help us lower these psychological impacts. So some of the future research that’s going on out there and hope that I hope we’ll be continuing to go on has to do with coping styles and predictors of resiliency.
We want to know what helps people do well so we can encourage and nurture that. We want to do prevention research. We want to prevent these decreases in quality of life when patients first come to us, whether we’re psychologists, counselors, nurses or physicians. We want to create a buffer so there are fewer psychosocial impacts. This is, at this point anyway, a lifelong disorder. We want to look longitudinally. At what promotes health and decreases these negative impacts on, we’re also really curious because stress is an immunological event and it creates changes in our immune function. We want to know the impact of stress on the allergic response itself.
And of course we want to look longitudinally at kids and families, both developmentally and just in terms of across lifespan and life events, how food allergy is changing things for people. All right. Let’s take a look more specifically at what happens when there has been an allergic reaction and what coping with that looks like and what we can do to facilitate adaptive coping in the folks that we work with. It probably goes without saying, but nobody is going out into the world expecting to have an allergic reaction or seeking one.
Certainly these are events that are unexpected and shocking. Most people are working hard to manage their food allergies, working hard to prevent exposures. And so when a food allergen slips through and there’s a reaction, no matter how severe, that in and of itself is really distressing. Regardless of severity, this is a really important point. A reaction does not have to be life threatening in order for it to be enormously stressful. Particularly but not necessarily in people who previously had life threatening reactions.
Even mild reactions can be very frightening. You know, a few scattered hives because the child or individual might know well, a few scattered hives last time turned into anaphylaxis, or my queasy tummy feels just queasy. Right now. But what if I start vomiting uncontrollably? I know that that’s a risk and I have to monitor myself to make sure that I take the appropriate reactive, reactive steps if my allergic reaction escalates. So while they’re sitting there with that queasy tummy or those scattered hives, they may be feeling, you know, almost a panic level response. Again, reactions may be perceived as life threatening. So even a fairly large reaction, a skin reaction, a GI reaction, let’s say with no threat to Airways, no drop in blood pressure, people are doing well.
The sense of the potential for, life threatening reaction is still very great and can create a lot of distress. Please remember too that it’s not just the patient that can experience a lot of negative psychological reactions. Any witness. I have many moms in my practice who were witnesses to their child’s anaphylactic reactions and truly have PTSD from being a witness to that. Even when their children were treated and immediately recovered, fully recovered rapidly.
Those moments of witnessing your child in a life threatening state are truly terrifying and can leave deep scars. So what can we do, what can we do to mitigate against some of those negative psychological consequences? Let’s talk about working with caregivers, because those of you out there in clinical practice may be seeing parents, moms, Dad, working with them on how to take good care of their kids with food allergies. Please remember that when you review allergy action plans and use of epinephrine, those reviews may not be sufficient to overcome the anxiety that caregivers may have about preparing to do a good job responding to those allergic reactions that may occur.
So you want to really support them and help them in recognizing how important it is to prepare mentally and prepare behaviorally, which we’ll talk about in a second. We want to remind caregivers that one of the gifts of food allergies that we know what the plan of action is, we know what medications help, we know how quickly they can be efficacious, and we can really bring home to families and caregivers what a good job they can do in responding when they respond rapidly and according to the plan. Problem solving and planning are the keys to implementing those plans successfully and making them feel efficacious and strong in responding to their child if they need to respond in a food allergic emergency.
So what are the facets and aspects of preparing for an allergic reaction? And I want to also emphasize that these are not one off conversations whether we’re working in a counseling setting, in a nursing setting, in a school setting or in a medical setting. Hopefully we’re going to have multiple conversations with caregivers about managing food allergies. So we have lots of opportunities to reinforce all of these factors. So Needless to say, remaining calm in an emergency helps us have access to the information we need in order to respond appropriately.
At the fight, flight freeze response impairs our executive function. Uncertainty about what to do creates hesitation and delays responding. So mental rehearsal, behavioral rehearsal, which I’ll talk about a little bit in the next slide, helps us override that fight/flight/freeze response, keep our frontal lobes engaged and give us access to the information that we need in order to respond appropriately. Preparation, we just talked about rehearsal that we’re going to talk about in a second are key to that calm and effective response.
Obviously, everybody knows, needs to know what their allergens are, what they look like, how to spot them on an ingredient list, how to talk to food preparation folks about omitting an allergen from food preparation and serving so all of that can be reviewed. Obviously we want to give in the medical setting a really thorough allergy action plan that outlines what to do so folks can review that whenever they need to. Another really important facet I work on this a lot in my clinical practice is helping people tease apart what might be an allergic reaction to what might be an anxious reaction.
There is unfortunately, quite a bit of overlap. Feelings of impending doom are a symptom of anaphylaxis. Feelings of impending doom are a symptom of panic, rapid heart rate, changes in breathing, even changes in you know, flushing, skin coloration, vasodilation, all or things that can happen when we’re experiencing anxiety. So making sure that you’re spending some time talking to folks about how do you notice within your body what’s going on, how do you identify a multi systemic reaction and really helping them talk about their own bodies, what’s happened to them in the past, what you’ve observed in other patients can go a long way in bringing their awareness to the most important facets so they know when they need to administer epinephrine.
And of course, we want to help with the rehearsal of administration of epinephrine. That behavioral rehearsal is so crucial, I can’t begin to say enough. Every epinephrine auto injector packet contains a trainer. Those trainers are invaluable. I don’t care how many times you’ve reviewed it with a patient. Review it one more time. If you’re seeing people in a counseling setting, make them. Bring it with you. Have them practice on themselves, have kids, practice on stuffed animals.
Make it an easy behavioral repertoire to access, and that will be more available. When they’re under stress. So again, rehearsal. This might be something that can happen beautifully in a counseling setting or in a nursing setting. We really want to walk people through. What are you going to do? If, just like we’re all supposed to do fire drills in our own homes, we do them or not, we should? It is great to do allergic response drills.
That can be done at home. That can be done at school. We can use our imaginations both with adults and kids. We can use role play. You know, I’m going to be the kid. Why don’t you say what you would say to me? All right? I’m going to be the mom. You be the kid, and I’m going to practice what I say to you. You can role model that direct communication, how to help keep a child calm when they’re under stress, using a calm tone of voice, reassuring language, even practicing the language that you might want to use.
For example, no, I think you might be having an allergic reaction. I’m going to go get your epinephrine and we’re going to stay really calm and breathe together and count to 10. We’re going to give you that injection, and then we’re going to get help to make sure you’re OK. Remember, this is the medicine that’s going to help you and make you feel so much better. Just a simple script and lots of rehearsal. Again, makes that information accessible when the person is under stress.
You can also encourage people to rehearse, asking for what is needed. So if there’s a family out somewhere, a mom with several children, maybe she needs assistance from a bystander. Maybe she needs someone to call 9-1-1 for her. Maybe a child needs to rehearse asking for her help from a coach or a camp counselor. That is also part of the emergency response repertoire. So rehearsing, using language, rehearsing, practicing. Oh, hey, you over there in the red stripe shirt.
Can you help me by calling 9-1-1? That’s not something that we typically find ourselves saying, and people will get tongue tied even with simple language like that. And behavioral rehearsal really increases the likelihood that they’re going to do that well. Ok, this is a busy slide, but I love it because it goes over a lot of important information. After an allergic reaction, there are just a ton of different emotional responses that a person may have.
Obviously may feel more upset, worried, or stressed, and there may be a variety of emotions that take place over days, weeks, or even months that may vary with the severity of the reaction. But as I mentioned earlier, even a mild reaction can be really upsetting. A child may begin to question their adult character’s capacity to keep them safe if an allergen has now slipped through. Please also remember that this is very true with children. It can also be true with adults. Even though they did nothing wrong, they may feel guilty, responsible, or bad for having had a reaction.
If it was disruptive to an important event, if it took people away from a family vacation, if it kept them from taking their final exam, if it interfered with their college audition. All of these things that go along with like some sort of environmental consequences of having a reaction. People can internalize that as something that they shouldn’t, shouldn’t have allowed to happen, and feel guilty, bad, responsible, and then parents. Of course, if they feel that they failed, or caregivers, they feel that they failed to protect their child.
Oh my goodness, the guilt is enormous. Even someone who’s been super successful in avoiding their allergen in the past, if they have a reaction that confidence may be truly shaken and may need to be built back over time through some counseling and support interventions. I see lots of avoidance. I see lots of ARFID, which is an avoidant and restrictive food intake disorder, and food allergy patients where they have simply decided that eating fewer foods is safer. And so they begin to avoid foods that are, you know, truly safe for them out of a sense of increasing their comfort and safety.
There may be feelings of helplessness, withdrawal, avoidance of talking about it, even though talking about it is going to be helpful. The sensory elements of an anaphylactic reaction can also be triggering. I’ve had clients tell me they no longer want to wear scarves or turtlenecks because they have sensitivity in their neck and throat after having had the sensation of their airway closing. So I just wanted to give you a feel for the kind of Broadway that going through an allergic reaction can affect an individual.
And of course this may linger over time. All right. I’m going to talk briefly about interventions. So cognitive behavior therapies and the components that go into the cognitive behaviorally informed interventions are really valuable in the food allergy space because it includes psychoeducation and problem solving. Challenging those perceptions, beliefs and mindsets right that we talked about are so influential skill building and fifth self monitoring. So like how am I responding to these experiences, what am I doing and how do I want to change and modify that we teach coping skills.
All of these things are contained in a variety of different approaches to the cognitive behavioral sort of approach to psychotherapy, and I just listed a few other labels. So acceptance and commitment therapy, mindfulness based therapy, dialectical behavior therapy all include a lot of these elements and can be really helpful. So again, just as a specific example, one of the things we want to do is provide that accurate information in a psychoeducational manner about risks. We want to increase the interventions that I described earlier to improve emergency response efficacy. All of that is going to reduce anxiety. Those are knowledge, understanding, and behavioral rehearsal. We want to collaborate with physicians, if you’re in the counseling space to find out what is truly safe and truly unsafe, and then you want to increase a perception of safety around all of those actually safe environments and experiences. So just one example, I had a peanut allergic young adult in my practice. I worked with this allergist because he was afraid to walk down the aisle of the supermarket that contained peanut butter. And so we talked about like, well, how safe is that? How unsafe is that? Can we bring peanut butter into the office? We talked to your biologist. Can we open the jar of peanut butter or can’t we, can we look at the jar of peanut butter? Can we hold the jar of peanut butter? Just creating an accurate sense of safety and risk.
So I talked a little bit about this already. So in a therapeutic context, we might do a lot of role modeling, role-playing rehearsal with kids. I love to, use to, play dolls, storyboarding. I can’t tell you how many cartoons I’ve drawn and stories we’ve told, you know, puzzles we’ve made to do the creative storytelling that allows that child to express their own experience and then to build new skills. So it might be easier for them to imagine that their teddy bear or their doll is manifesting the skills that they themselves have to build before they feel comfortable displaying them themselves. Art writing, journaling, blogging, poetry.
All are great interventions to help people internalize the changes that they need to make in order to navigate their food allergies success. Just a few other psychotherapeutic approaches that are wonderful in working with food allergy. Self compassion. So this really talks about being nurturing to oneself to counter some of the invalidation and some of the overwhelm, helping people really recognize that they are worthy of a compassionate approach to what they’re going through on things that I think approaches, that look at systems like school systems, family systems, workplace system and trauma informed approaches because as they mentioned previously.
PTSD and symptoms of trauma, even if it’s not full blown PTSD, I see frequently in my practice with food allergy families. So, one example, just thinking about systems within a family, you might want to work on developing a shared view of food allergy living. So is everybody on the same page about how we manage food allergies? Does everybody have the same language? What does an allergic reaction mean? Just do grandma and grandpa understand what that language means? What does it mean that you have to go to the emergency room every time? Do they understand why that is? Have all family members or all members of the system agreed upon? What are the health behavior strategies? Do we take epinephrine with us when we go walk the dog or do we leave it at home unless we’re going to eat food, you know, what is the plan that your doctors have recommended? And what is the plan that this family is implementing? Is the whole system implementing it consistently? Are people in the family able to support each other? Do they appreciate the impact that food allergies are having on the other family members because that can vary widely? Can they express and accept each other’s emotions? Maybe one child, and I’ve seen this many times, is serious and another child is scared.
Those are both valid reactions to living with food allergies, and they need to be accepted and welcomed and worked with within the family. And then, of course, responses to stress goes along. With that support. Can we provide the support when and where it’s needed? Alright, just checking my time here. It looks like we’re in good shape. So I’m going to give you an overview of a couple of cases. These are not actual cases. These are composites of folks that I’ve seen in my practice. So you know, this is not identifying. There’s, no Brandon, there’s not identifying information about anyone. But in this fictional case, this is a high school senior with a nut allergy, this particular family, this family never really received adequate basic food allergy education that Brandon knows.
Unless they never transferred much information to him. He was pretty angry about that when I met with him that they really never sat him down and talked about it. He was told he had a peanut allergy. He was given an auto injector and kind of sent on his way. Not the standard of care, I agree, but that was the case in this particular family. This young man avoided all kinds of situations and foods that he didn’t need to avoid for his own safety, and he was often taking Benadryl just because he felt anxious and just because he thought he might have a food exposure, even when that was incredibly unlikely.
He was exhibiting all kinds of anxiety symptoms, feeling on edge all the time. He was concerned about his ability to tell if he was having an allergic reaction because he was anxious all the time. He did have a reaction at school after eating a cookie. A friend brought me in because, again, he wasn’t terribly well educated. He assumed that the absence of a memory contained statement meant that the cookies were safe for him. When EMTs came to respond to him, one of the folks who was on the EMT squad told him, I’m so glad you didn’t inject yourself. Those epinephrine pens are so painful.
So A, that’s not true. Epinephrine injections from what I’ve been told from all my patients are not that painful. And B, what a ridiculous thing to tell a patient. Don’t give yourself the life saving medication that’s been prescribed exactly for that purpose. So tons of misinformation that had to be worked through with this particular client. His own personal worries were about starting college, not being able to make friends, having an actual reaction far away from home, finding safe food, dating.
You know, you can imagine those are pretty normative worries for a kid going off to college. So what are our issues that we want to address in treatment? Certainly has chronic anxiety. Just helping him manage that, learning some anxiety management skills and tools, decreasing his unnecessary avoidance. Providing appropriate education accurately, whether that’s coming from me, coming from reputable websites and reading coming from his physician on bringing him all kinds of accurate resources so he can align his knowledge with what’s true. Addressing his worries about the future, putting plans in place so he can be more confident about making friends. He can be confident about dating.
He can feel like he’s not going to be viewed as a freak because he’s just a normal kid dealing with a medical condition. And then seeing if he needs to work on some social skills so he can work with a new friend group and engaging with his peers when he gets to college. So that kind of gives you a sense of my treatment plan as I worked with the fictional Brandon. Here is another composite case. This is Carrie Monmouth. Two children each with different food allergies. Really on it. Working so hard to manage her kids food allergies.
Hacking food all the time, making sure her kids can go anywhere and everywhere. Also working part time but exhausted and filled with anxiety. So this is a woman who presented so picture perfect, really well educated, new at all, but filled with anxiety. And really kind of reaching her limit in managing the daily burden of food allergy. Also lots of trauma right under the surface. So the minute I started to ask about who the allergic reactions that her kids have had tears. Really high anxiety response on feelings of helplessness and overwhelming nightmares.
An oral food challenge coming up for one of her kids that she was just terrified about. So what are some of the issues we wanted to address in treatment? Obviously, this sense of stress and overwhelm may be recalibrating her expectations of herself and reassuring her about what her kids really need in order to be normal and healthy. Working to understand are her kids really in a state of emotional distress, or is she overestimating their needs? And then really delving into her distress from witnessing these anaphylactic reactions and making sure that she doesn’t have post traumatic stress.
And if she does that gets addressed. I am going to turn this over to Sally, who’s going to talk to you about a home study course for mental health professionals that I have worked to create with. The Allergy asthma network. And I appreciate your time. And then after this, we’re going to go right to questions and answers. Doctor Rosenbloom, thank you so much for a really great program. Yeah, I just love listening to you because it’s like I learned so much every time. Even though I’ve heard you before, I love listening again. So looking at, we have a home study course that is titled the Mental Health Professionals Guide to psychosocial issues and food allergy.
And this is a home study course. It’s a one of a kind program. Deck thank you. It’s designed to really enhance your practice of health. It’s for life intended for licensed professionals, but we can be pretty flexible with which licensed professionals. But it’s going to really increase your competence and confidence in working with food allergies. We’ve been talking to school counselors, we’ve been talking to mental health professionals, we’ve been talking to actually, we have food service directors we’re talking with about the program, but it’s an 11 program module.
It’s online learning, you know. It’s the self-paced on demand. You do it and you’re in your own home, at your leisure or at your convenience. You can be in those comfy pants if you need to be and if you also have slides that you can print out and reference lists. But it’s all evidence based and practice proven. We have a professional faculty of psychologists and medical doctors. It covers everything from foundational knowledge to medical and psychosocial. Issues and case studies with appropriate interventions.
So the big thing some people said to me is, well, why should I take this course? And it’s really, you know, the food allergy population is growing and it’s up to more than 30 million patients and that is a significant number of people and they need mental health support. It’s also good for you as a practitioner because it’s a career enhancement. If you’re new in your career, this helps you grow your practice. If you’re a mid career practitioner, this can really add to your practice. And give you more of a depth of understanding of how to help families with food allergies.
And we do have CE that’s offered through NBCC. That’s something you know you can earn your CE while you learn, but you do need to always make sure that your profession will accept that. We have the modules that are offered are everything they’re listed here on the side of the slide. They’re everything from food allergy one oh, one foundational language, understanding the burden and then we go through developmental stages, infants, toddlers. Elementary, middle school, adolescence and then helping parents cope and also addressing those issues and really looking at coping and interventions that can be offered to help people and G has talked a lot about that today.
So that’s basically you know what’s in the course. So if you want to participate in the course, the course is separate. You take the course and then if you want to go on, you could be a certified food allergy coach through the Allergy & Asthma Network. We have a list of approved providers we’ll help promote coaching practice. This can be done locally or remotely and there is an option to join our HIPAA compliant telehealth platform for certified coaches.
And if you want more information on this, email allergyasthmanetwork.org. That’s also the email address that comes with all of your webinar emails, so you can find that easily, but we’d love to have you join our food allergy community and this really does make a difference. So at this time we will go to your questions. We have a few here and our first one is for Doctor Roseblum. Do you help people who have developed food disorders, especially ones that started due to fears from food allergies? Absolutely, yes.
So in my practice I see a lot of patients who have mostly avoided and restrictive food intake. So they are avoiding foods that they don’t need to avoid for safety purposes that can overlap with other eating and feeding disorders. And I really look at it as a kind of whole in a holistic manner. So I look at the anxiety where the anxiety is coming from, is it stemming from an individual who had a severe allergic reaction and after that, began to avoid, I asked questions about why they’re avoiding and what they’re avoiding, and really try to provide education and interface with physicians to make sure that if they have a fear that we can address why that fear is not valid. And then provide exposure slowly and gradually to the safe food so they can become comfortable eating it over time. And that’s something that, you know, a licensed psychologist or a licensed counselor who’s educated about food allergies would be able to work with as a symptom. Well, I can answer the next question.
Someone’s asking if the slides will be made available and we will put a PDF version of the slides on the website with the recording. So that should be available soon. Ok, someone’s asking what is the best resource to assist a patient with obtaining epinephrine if they do not have insurance. Is that something you can answer, Doctor Roseblum? Yeah, that’s a little outside my purview. It would depend on a lot of factors like what state the person is living in and what the resources are in their local medical community. So I would refer someone back to their physician or back to Allergy & Asthma Network or some of the other advocacy organizations that can help them with that information.
We do have, under allergies in anaphylaxis on our website. We do have something that says what if I can’t afford my epinephrine and you can actually. Contact the companies to get some information and they’ll help you with making sure you can get what you need. So this is an interesting scenario. As a pediatrician who’s been around many years with multiple food allergies, the triage nurses in the last 15 years are the worst part of an allergic reaction, they continue to say. Are you, you’re just too anxious? Do you know of any effort in educating nursing and personnel? Yeah, wonderful. It’s a wonderful question. And yeah, I do encounter a lot of dismissal and invalidation and a lack of understanding of also medical trauma, sadly within the Ed departments at hospitals, frequently my wish is that they would take this program that I’ve developed or that they would take this webinar series because their comprehension of the impact of their behavior is so poor.
They don’t really understand that they’re not helping. I think their intentions are good. Which is to try to get people to calm down and tell people they’re overreacting. But that is a totally ineffective strategy in getting people to calm down and helping them to modulate their response so the, you know, the intervention is available, this training is available if there are. You know, communication pathways that we can work on together with physician groups to bring this knowledge to the, you know, the environments that educate emergency responders, that would be ideal, but I think that’s a great, wonderful question and I appreciate your observation because I’ve observed it too.
As a mother and a nurse, I can’t imagine if I’m having a major anxiety reaction. If someone says, well, just calm down, it’s like, OK, that’s not going to help at all. So OK, our next question is, I’m an adult and I carry an EPI pen as well as children’s liquid Benadryl, as I often have allergy symptoms. Is there an alternative option for Benadryl as you get older? The side effects are dementia. Now, this may be something to discuss with their private physician, but Doctor Roseblum, do you have a comment on that? Yeah well, first of all, I applaud you for carrying your medications with you all the time, that is wonderful and being responsible about that is crucial. I would encourage you to whoever is the physician that’s working with you on your food allergies, whether that’s your primary care doctor or your allergist, to have a sit down conversation with them about what is the standard of care for you and also the frequency with which you’re taking that Benadryl or are you taking it appropriately and is there really a risk of dementia or some kind of cognitive sequelae if you’re taking it appropriately? The goal certainly, would be to only be taking it when you absolutely.
Ok. Our next question is does the process of treating patients with oral immunotherapy relieve stress or increase it? Question so my answer is it depends. A lot of research indicates that treatment with oral immunotherapy is beneficial emotionally, though it is a challenging process to go through. So I have sort of a two-part answer. Successful progress through OIT is beneficial obviously for reducing if a person responds well, reducing sensitivity to their allergen. However, the process of going through OIT is stressful and I think we need to provide patients with more psychological support than what I’m hearing they’re getting on a typical basis. I frequently, when I have patients and families in my practice who are going through OIT, provide a lot of psychoeducation about that process, a lot of suggestions and strategies for how they can cope with their daily dosing.
With their up dosing appointments, because those are very stressful, how they can manage what is typically prescribed as the period of rest around your daily dosing so that the whole, the individual and the whole family feels comfortable with this process. It’s a lengthy process. It includes acute stressors and I think there needs to be a plan for managing that successfully and then it should reduce stress overall. Thank you. We have another one that’s just a comment. One of our listeners said I had anaphylaxis yesterday and the nurses were amazing and treated me within minutes of arriving. Guess I got lucky with good nurses. So we just have to make sure that we’ve got both sides of the story here.
Can I just make a comment to that, Sally? Of course. So that is wonderful. And I’m so glad that this person got the medical attention that they needed and they’re doing well and it really is the case in point for how that emotional support at the appropriate medical support is essential. But the emotional tone with which you’re greeted can change things dramatically. So helping parents and caregivers respond in a way that’s supportive, helping medical professionals to respond in a way that’s supportive. Because resolving the physiological reactivity is only one piece in my book.
For healthy responding, you want to resolve also the emotional piece. So that’s just a great case in. You need to talk to every caregiver to you. That’s all there is to it. These webinars because I can’t. So I want to, you know, create an army of people who know what I know and then they can do it. That’s right, we’ll work on that. Ok, someone is saying, regarding unnecessary situational experiences, how do you break out of that when it feels so necessary? Specifically, a 1 and a half year old being out and around people and other little friends and the worries about being every single thing he might touch, toys he could share from other kids who could have eaten his allergens because his fingers are always in his mouth right so great question and that’s just a quintessential stressor for food allergy families, right? Young children’s toddlers hand in mouth constantly having to have that high level of vigilance and having to monitor your child, other children, etcetera, etcetera, so. What I would do so if you came to work with me about what it’s like to be a mom or a dad in that situation, we would break it down into a pretty detailed analysis of, well, where are the risk factors? What are the environments in which you can take a deep breath in as a parent and take a step back and let your child play? Are there environments that are not food containing environments? Are there environments where other families are going to be receptive to the idea of every kid wants, you know, uses hand wipes or goes and washes their hands before they play? Can you create environments where you can relax that vigilance and just let your kid be a kid and if they touch and put their hands in their mouth, it’s going to be OK versus you’re out at the playground, it’s public, you don’t know who these other kids are.
And maybe you have to walk behind your kid and just gently grab their hand and wipe them off if they put their hand in another kid’s mouth or something like that. And then scaling that behavior developmentally so that as your child gets older, and they’re less and less likely to put their hands in their mouth and you can start to educate them. When I talk about this in the webinar, the developmental series webinars about young children, as you can start to train them to change their behavior so that they’re safer, you can relax your vigilance because now the situation is less risky.
That’s our goal. We’re trying to have the level of vigilance that’s appropriate to the situation. Not too much, not too little like the Goldilocks of vigilance. The Goldilocks of vigilance. I like that. Ok, what advice would you give school nurses who have orders from doctors to use Benadryl first monitor for improvement before giving EPI? So again, that’s a bit more of a medical question, but it’s a self advocacy question also.
I know we’re just out of time. So I can answer that one was my thought as a school nurse. I often ran into that situation and obviously we need to follow doctor’s orders. When I got that order, I would call the doctor ahead of time and say, you know, I, I’m aware that, you know, benadryl is going to take 30 minutes to act in anaphylaxis. We don’t have 30 minutes. So you know, it’s the apples and oranges of if it’s a mild allergic reaction.
That’s very appropriate to give the Benadryl and monitor. However, if it’s truly anaphylaxis, you need to give the epinephrine. So could you give the Benadryl and then quickly follow it with the epinephrine? Sure you could, but you want to make sure that you clarify orders ahead of time if you need to. But we always say epinephrine first, epinephrine fast because it’s the only treatment for anaphylaxis.
So we still have more questions, but we can’t get to all of them. So here I will go with this one last question that someone did ask it, could they take one or two modules, but it’s a package of 11. So that’s the answer to that one. So here’s going to be our last question, what’s the best way to find a person qualified to do what you do in my patients local area? What credentials should we look for? So licensed psychologists, licensed counselors, clinical social workers can all do this work.
It really is a question of their training and background and their knowledge about food allergy, which is challenging. One of the other services I provide is that I will do consultation with other mental health providers. I encourage finding a mental health provider that might be willing to take this training that’s Ali’s been talking about. So that’s 1-1 approach. Finding a licensed professional who has skills in the cognitive behavioral interventions that we talked about would be important because there’s so much psychoeducation and skill building that’s needed in addition to more supportive psychotherapy.
So that would be important. Finding a person who’s willing to be trained, finding a person who’s worked with other medical disabilities, who’s worked with pediatric diabetes, for example, where asthma, because they’re going to already have a little bit of a skill set that they could build on. Well, thank you so much, Doctor Roseblum. We’re so glad you could be with us today and answer these questions. So I would like to thank our listeners for being with us today as well as we talked about coping with food allergies. So we’d like to invite you to join us again next time for our next webinar. It’ll be on COPD phenotypes. It will be on July, Thursday, July 26 at 4 PM.
You can register for this and all of our webinars and allergyasthmanetwork.org scroll all the way down to the bottom of the homepage. To find our webinar recordings and links for registration. I’d like to invite you to join us the next time, but we thank you for joining us today. This is Sally Schoessler for the staff at Allergy & Asthma Network. Please stay online for two to three minutes to take an evaluation survey, but join us as we work every day to breathe Better Together.