Katherine Dahlsgaard, PhD, ABPP, Co-Founder of FAB Clinic, and Megan Lewis, MSN, CRNP, a nurse practitioner and Co-Founder of FAB Clinic, talk about how parents can gradually help their children overcome their food allergy anxiety with a survey called SOFAA.
Interview conducted by Ivanhoe Broadcast News in February 2022.
How common are food allergies and at about what age do kids start to develop these allergies?
LEWIS: Food allergies can “turn on”, whether you’re born with it, or it turns on in very early childhood. There are some food allergies that can come later in life, like with shellfish. Sometimes, some tree nuts can turn on with hormonal shifts. Things like pregnancy can turn on and off allergens. But the majority occur early on in childhood, in infancy. People often find out their allergies with their first food introductions with things like milk, eggs, or peanuts. The rate of food allergy is staggering. In about two children per 25-person classroom, or somewhere between six and eight percent of children in the U.S., have a food allergy.
Wow. What are some of the early symptoms?
LEWIS: Commonly, you would have symptoms within 30 minutes of exposure to the food and symptoms can last up to two hours. There are some different types of food allergies that come on about two and a half hours later, which is called food protein induced enterocolitis. It’s less common, but the most common is IGE mediated food allergy, where you eat the food and within 30 minutes, you start to develop symptoms. There’s really a trajectory of symptoms. A lot of people will start with some hives or some coughing, and symptoms can progress in certain cases. Initial symptoms, like hives or a runny nose, would typically be treated with an antihistamine. If you have two body systems involved, or any respiratory or cardiac symptoms, then we would want you to use epinephrine. That is the ultimate drug of choice; it’s the only thing that will stop an allergic reaction. Whenever someone is diagnosed, we give you an anaphylaxis plan with each body system and what to expect. The American Academy of Pediatrics and the National Institutes of Health have created early food introduction handouts that have symptoms to look for. So, it’s hives, coughing, breathing as we’re introducing allergens earlier to children.
How severe can some of these allergies be for patients?
LEWIS: Severity is something that can be different with each exposure to the food, lots of factors go into an allergic reaction. So, the child’s age, how much they eat, if they’re menstruating, or if they had a fatty meal beforehand are all factors that can make an allergic reaction more severe or less severe. Just because somebody had hives with their first exposure to peanut doesn’t mean they’ll have hives every time. We tell all families to be prepared for an allergic reaction where you would need epinephrine and that’s why we give everyone this standard anaphylaxis plan, symptoms to look for, and the treatment that they should use.
When you’re talking to parents about young children and breathing issues, one could imagine that that is anxiety-provoking for the child who has to live with that as they go to school. Can you describe the conversations you’ve had with those parents and how difficult it is for both parent and child?
LEWIS: One of the things Katherine Dahlsgaard and I speak about all the time is that food is everywhere. Food is impossible to avoid. So, when I tell you that your allergic reaction could be more severe the next time and you need to be ready, that just automatically makes you nervous, because you don’t know what to expect. The unknown is scary. You could go to a party, to a social gathering and there’s a buffet; food is just impossible to avoid. I think, when we give a diagnosis, for a long time in allergy clinics, we weren’t as sensitive to the implications on the family’s life. I think research has shown, in some of the data that Dr. Dahlsgaard will mention, we have found that this avoidance, and sometimes not necessary avoidance, can make things harder for families. They’ll start to think it’s easier to just not go to that birthday party if they don’t know what the ingredients in the cake are going to be. And then, that could turn into, “I didn’t go to that birthday party, now, I’m not going to go to any restaurant because I don’t want to have to ask the waiter.” We see our families getting smaller and smaller in their enjoyment of life. Dr. Dahlsgaard always says that food is fun, and food is everywhere. We want to help our families navigate the world as easily as possible, enjoy life, and do it safely. I think that people start to get worried about airborne exposures and they start thinking, “Should I be checking all the cosmetics? Should I be checking every hair product?” It can kind of snowball into more worries than they need to about their food allergy. We have spent a lot of time coming up with ways to educate them about how to safely navigate and enjoy life.
What is FAB Clinic? What does it stand for and what is it designed to do?
LEWIS: FAB is the Food Allergy Bravery Clinic. Dr. Dahlsgaard and I were privileged to get to work together previously at Children’s Hospital of Philadelphia and had a relationship before. We were both seeing lots of anxiety in our patients with food allergies. She was seeing patients in the psychology world with anxiety and food allergy, and I was seeing it in the allergy practice without any place to send patients who have this specific anxiety. So, with funding from CHOP, we were able to create this collaboration between the Department of Psychiatry and the Allergy Department, and we were able to come up with this collaborative effort. One of the first things we did was create a measure to identify unhelpful levels of anxiety, and then, the other piece was coming up with a treatment program. We have created this treatment to help address food allergy anxiety. Pre-COVID, it was a group treatment model, but we shifted gears to do everything via telehealth, and now, we do individual sessions at CHOP as treatment. And then, Dr. Dahlsgaard can see patients in her practice, as well.
Can you talk a little bit about the questions in the questionnaire designed to help you assess?
LEWIS: Yeah. I think before we had the SOFAA, we would ask lots of questions about how they’re managing with their food allergies; just vague, open-ended questions just to get the families talking. But now that we have this great tool to screen, I think it just opens the door for great conversation with families.
Can you speak a little bit about why it’s important to you and to everyone on the team to kind of get this information out there?
LEWIS: This was a collaborative effort. One part was to identify patients who had unhealthy levels of anxiety around their food allergy and the second part was to come up with a treatment manual. We are perfecting that manual. It’s a brief cognitive behavioral therapy, or CBT, focused treatment model that is exposure based, not talk therapy. The manual will be coming soon. We’re working to finish it and disseminate it. We have the measure available for everyone, so, it is meant for clinicians to use to help identify and pick up these unhealthy levels of anxiety that exist that have. I think people don’t feel comfortable bringing that up when they come for their annual allergy evaluation or when they’re with their pediatrician. We see picky eaters who are just selective eaters, and the parents think it’s because of their food allergy and they’re reluctant to eat in certain places. We’ve seen a lot of eating disorders in this population and it’s not just a food allergy. People with food allergy can have eating disorders, too, and people just might feel uncomfortable talking about that.
What are you seeing, when it comes to food anxiety, with parents and children and how do they bring it up?
DAHLSGAARD: What I see in my practice with food allergies is parents and children come to me and say they have too much fear. And I tell them exactly the same thing. We want people with food allergies to have a bit of fear, we want them to be cautious, we want them to be checking labels, we want them to be careful and checking ingredients when they go to parties and things. What we don’t want is for them to skip the parties or skip going to school because there are kids sitting next to them eating a peanut butter sandwich. Food is joy, even if you have a food allergy, there are ways that you can keep yourself safe and that will dramatically lower your anxiety. Excessive anxiety for food allergies is not so much the feeling, but rather, we measure it by the amount of unnecessary or medically unnecessary avoidance.
How do you know when it’s crossed over to the point where it is excessive?
DAHLSGAARD: Families frequently are able to tell us that. They will say things like, “I’m so embarrassed, I allow my child to stay home from school when she’s too scared to go because kids are eating peanuts there.” Families know when their lives are being compromised unfairly because they have a food allergy and excessive anxiety.
What can you do for these families?
DAHLSGAARD: The treatment for these families is very straightforward and quite effective, and we have good data on that from the FAB clinic. Essentially, we want to provide families with bravery challenges, and these are what’s known as proximity exposures or exposures. It’s a cognitive behavioral technique that is highly evidence-based. There is so much scientific evidence behind the notion that if you are avoiding things out of anxiety, things that do not need to be avoided, like dogs or swallowing food, then, exposure is the most active ingredient in a treatment. Gradual exposure to something that is unnecessarily avoided or endured with dread is important. At the FAB Clinic, Megan and I developed a treatment that was based on that scientific protocol but adapted specifically for families with food allergy.
Can you give some examples of how you would conduct this exposure?
DAHLSGAARD: Examples of the kinds of treatment that we do, both in the FAB Clinic and with me in my private practice over telehealth, are things like, if your kid says that she’s too afraid to be in the same room with another child who’s eating a peanut butter sandwich because she can smell it, and she’s afraid that she’ll have an allergic reaction just from smelling the peanut butter. I ask the child, “Do you think that there’s magical fairy pixie dust that comes off of the peanut butter and wafts its way over to you and somehow lands in your mouth?”, and they say they do. So, I say, “Let’s do a bravery challenge.” This is the Food Allergy Bravery Clinic. I let them sniff some peanut butter and we have a peanut butter sniffing party. I spend all day smelling peanut butter. What happens from doing that is the child and the parent get direct, experiential proof that smelling peanut butter is not going to lead to anaphylaxis. It may lead temporarily to increased anxiety, but it will not lead to an allergic reaction. Once they find out in four times in a session, with me at home, at a restaurant, in the car, that they can smell peanut butter anywhere and it does not result in an allergic reaction and now, they are much less anxious. The anxiety goes away because they have proved it to themselves.
So, there’s no tasting, you’re just working on fear?
DAHLSGAARD: No, in the FAB treatment, we are working on what’s known as proximity exposures only. So, we have the kids smelling, being around, and, perhaps, touching an allegation and then washing their hands carefully. We leave OIT, or the oral immunotherapy, to medical professionals in medical settings.
What would you recommend to people who are not within your area? What are some resources they can they look towards?
DAHLSGAARD: The first thing I would recommend is that they seek out a cognitive behavioral therapist. Cognitive behavioral therapy generally is the evidence-based therapy for anxiety disorders. But beyond that, I would ask them to find an exposure therapist, someone who is willing and able to do these kinds of proximity exposures. The reason for that is because it is the most direct way to lessen anxiety. It is efficient and it is something that can be applied to situations where they really live. These kids live at school, at home, at birthday parties, not in sessions. So much of the public’s understanding of therapy is sitting in an office, talking about their feelings, talking about their anxiety. But that does little to alleviate anxiety, particularly when it’s based on a false understanding or a myth that something is dangerous or lethal when it really isn’t, such as being in the same room as an allergen. I would recommend seeking out a CBT therapist, but particularly one that can do exposure.
At what point do you know this is working?
DAHLSGAARD: I love my job because I have never in my career found a treatment that works as well and as efficiently as this one. So, I’m now in private practice. I see patients via telehealth in 27 different states. What I see very quickly is that they think “I was really anxious,” or “I was really scared.” Then, they think “I did it!”, and then, they get bored and ask, “Dr. Dahlsgaard, can we move on?” They get annoyed at me, and it’s great.
That is success. Is there anything that you would want to make sure that people know?
DAHLSGAARD: Prior to the FAB clinic, there was no measure that was specific for food allergy anxiety. Physicians, researchers, and clinicians had to rely on generic measures of anxiety, like, “I feel worried” or “My stomach hurts when I’m feeling scared,” but that had nothing to do with food allergy anxiety. When we designed the scale of food allergy anxiety, also known as the SOFAA, we wanted everyone to come and sit on our sofa. The way that we designed it is that we have parents and children fill out separate measures so first we know who’s the anxious one. Sometimes it’s the child, sometimes it’s the parent, and sometimes it’s both. Because we have two measures, clinicians will know where to direct their intervention. The second thing we did was focus the measure on rather than thoughts and feelings, we focused it on trying to figure out where the medically unnecessary avoidance was. The measures ask questions like, for the parents, even if there are safe foods available, my child still will not try a new food, even if I check the ingredients and cleared it and said it was OK. So, the measure itself can be used as a clinical tool for clinicians. They can look at it and not just get a score, but also get the specific areas where the family is engaging in too much medically unnecessary avoidance.
Could you run through a list of some of the more common food allergens for kids in the clinic?
DAHLSGAARD: I see children with all different shades of the “big nine”. The “big nine” include milk, eggs, wheat, soy, peanuts, which is the most common tree nuts, and sesame. I’d see kids with multiple food allergies. It doesn’t matter; the treatment works whether you have one allergy or several. One of the things that we find is a direct cause of anxiety, beyond avoidance, that families truly don’t know what is true and not true about what is safe enough in terms of their allergy management. There are myths that that families truly believe. So, I give talks on how to manage food allergy anxiety, and I talk about things like sniffing peanut butter. There are so many myths out there, and we really try and counter those myths directly via proximity exposures that prove otherwise.
LEWIS: I was just going to add two other pieces. Just that, along with the exposures, a big piece of our FAB program is good education and it’s amazing the myths that people have that drive their anxiety, like Dr. Dahlsgaard mentioned. We spend a lot of time on food allergy education. I think what’s such an interesting collaboration been for the two of us is for the medical piece and the psychology piece to come together. Our education has all been proven through really good, rigorous clinical trials that it is safe to do and that you wouldn’t have a reaction. People wore air monitoring devices to know if they could react to the peanut being airborne. So, having that data and the science behind our rationale really helps to make this treatment so effective and efficient.
END OF INTERVIEW
This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.
If you would like more information, please contact:
Camilla Travia
Sign up for a free weekly e-mail on Medical Breakthroughs called First to Know by clicking here
