For Some Food-Allergic Kids (and Parents), Anaphylaxis Isn’t the Worst Problem
— It’s the unnecessary, crippling worry about the possibility of it
by John Gever, Contributing Writer, MedPage Today November 8, 2021
NEW ORLEANS — Meet Sally. She’s a 10-year-old who had an anaphylactic reaction to peanuts as a toddler.
Although she can’t remember it, and hasn’t had another one like it, she worries incessantly about peanut exposure.
She runs from the room if she smells peanuts, won’t eat in the school lunchroom, won’t go on playdates without her mother, is always washing her hands, and needs constant reassurance that tummy aches and feeling hot aren’t signals of an impending reaction.
That’s how Katherine Dahlsgaard, PhD, began a talk here about a program she helps lead at the Children’s Hospital of Philadelphia (CHOP) for treating excessive anxiety about food allergy — in children and, often, their parents.
Families may go to extraordinary and what Dahlsgaard called « medically unnecessary » lengths to keep their children from coming into contact with allergic foods.
The anxiety can become diagnosable as a phobia under DSM-5 criteria.
In her talk at the American College of Allergy, Asthma, and Immunology’s annual meeting, Dahlsgaard made the case for a form of exposure therapy to relieve the anxiety and help children and parents live more normal lives.
She described how families get caught up in a cycle of avoidance, fed by the belief that it « works » because the child isn’t having allergic emergencies.
But the child « isn’t doing things other kids do, » and, like Sally, ends up socially isolated.
The entire family might never have been in a restaurant in 10 years for fear of exposing the child to peanuts or whatever else she’s allergic to.
The key concept is « safe enough, » Dahlsgaard said: establishing realistic boundaries on what the child needs to do to stay safe, and also accepting that allergic reactions may occur but being prepared to deal with them (e.g., carrying epinephrine injectors).
She emphasized that anxiety is a good thing within limits.
Patients need to be watchful. But when avoidance becomes the « the main coping strategy » and the child is functionally impaired, then the anxiety is excessive.
To become diagnosable, it needs to have lasted 6 months, she noted.
Anaphylaxis anxiety is dramatically and chronically overestimating several types of risk associated with food allergy: the likelihood of a fatal reaction, their inability to cope with an allergic event, and the probability that minor somatic sensations that most people would brush off are indicative of an impending attack.
Exposure therapy has proved successful for other phobias and obsessive-compulsive behaviors, Dahlsgaard said.
Herself a clinical psychologist, she helped develop the CHOP program called the Food Allergy Bravery Clinic.
It follows a gradual step-up model in which children (with parents present) are brought near their particular allergic food in a safe setting. The exposures get more intimate over time: for example, at first a peanut-allergic child sits near an open jar of peanut butter; in a subsequent session, he may have it smeared on a hand to be then washed off.
Dahlsgaard said it’s important that this therapy be delivered in a professionally run clinic setting, not as unsupervised homework.
As these exposures occur without causing an allergic reaction, the child and parent both gain more confidence about resuming normal activities.
The program coaches families on the sorts of less-crippling avoidance measures they should be following, such as how to talk to cafeteria and restaurant personnel about potential exposures and how to prevent contamination of utensils and surfaces at home.
But it also teaches families how to conduct realistic risk assessments in situations they will encounter during normal activities.
Dahlsgaard presented results from an early examination of program outcomes.
Nine girls and one boy participated in six group sessions where they sat around a table (with parents in the room) with their allergic foods present.
Children with diagnoses of IgE-mediated food allergy with epinephrine prescriptions, as well as meeting diagnostic criteria for specific phobia were selected.
The six therapy sessions were followed with a group booster session after about 2-3 months.
Outcomes were assessed via several instruments, including the structured interview called for in the DSM, the Screen for Child Anxiety-Related Disorders (SCARED) completed by both parent and child, and an evaluation developed at CHOP called the Scale of Food Allergy Anxiety (SOFAA), also with separate forms for parent and child.
None of the 10 children dropped out of the program and seven families were present for all six sessions; the rest only missed one.
Eight families attended the booster session, which was considered optional.
Upon completion of the six sessions, SOFAA scores dropped by about half from baseline for parents (who assessed how fearful they thought their child was) and for the children.
They were assessed again at the booster session, at which point the children’s scores remained at the immediate post-treatment level and parental scores dropped still further.
A similar pattern was seen on the SCARED scale, but with smaller decreases from baseline.
Parents also evaluated quality of life on a standard food allergy-specific questionnaire. It also indicated moderate improvement.
Dahlsgaard relayed verbatim comments from participants.
A common theme was gratitude at being taught about « safe enough. » One parent said the program also lowered his/her own anxiety.
John Gever was Managing Editor from 2014 to 2021; he is now a regular contributor.
The study had no commercial funding. Two co-authors reported relationships with DBV Technologies, which is developing an immunotherapy for peanut allergy.
American College of Allergy, Asthma, and Immunology