Anaphylaxis is terrifying, but a child’s quality of life can suffer disproportionately from the anxiety.
There’s nothing worse than hearing the words, “your child has a life-threatening condition,” but experts are urging clinicians to help dismantle some of that fear.
It may seem like a rational reaction, but too much anxiety could backfire, immunologist Dr Paul Turner told audiences at the ASCIA 2022 conference in Melbourne this month.
Instead, it was vitally important for clinicians to enable children and their families to live a good life, the paediatric allergy and immunology consultant at Imperial College London said.
“We’re not desensitising allergies so much as the psychology of being allergic.”
Accidental reactions were common, but death from anaphylaxis was rare and unpredictable, Dr Turner said.
He pointed out that about one in 250,000 children and teens around the world die from a reaction. “My patients are more likely to die [on the roads] coming to see me every single year in a clinic than they are from their food allergy.
“What we need to do is to communicate that to families and patients, so they no longer think having an allergic reaction is a one-way street to dying. Because it isn’t.”
The risk of severe reactions, while still rare, did go up in teen years. But Dr Turner said he “had a hunch” that those who had stricter parents when younger took more risks later.
“[Teenagers] are pushing against other people controlling them,” Dr Turner said.
“They’re not allowed to do it so they’re pushing back and taking risks at home because they’re not allowed to take a risk abroad with their friends, and that’s far more dangerous than being sensible with friends.”
But one thing he and his colleagues have found helpful was to treat teens like adults, by seeing them without their parents, and prioritising their needs.
Find one thing that they want but aren’t allowed to do, and help make that happen, he said.
“If we can get the education right at the start and get a sensible approach to food allergies, we have a chance of nipping in the bud some of the issues for teenagers around transition.”
Ms Deirdre Brandner, a paediatric psychologist specialising in food allergies, agreed it was important not to make children fearful.
“We think we need to make children afraid to make sure that they follow the rules. Our message needs to be: I’m going to give you the tools that you use to keep yourself healthy but still do everything you want to be able to do.”
Parents often used terms like “extreme”, “severe” and “life-threatening” to ensure that not only their children but also relatives, teachers, babysitters and others understood the importance of taking the right steps, said Ms Brandner. But that could fuel unnecessary anxiety in children.
Some allergy-related anxiety was due to the social repercussions. So educating children about how common they were could be helpful.
“I remember some people coming to me, especially teenagers, feeling like they’re the only one in the room, in the world, who has that allergy,” said Dr Turner. “The most powerful thing is to meet other teenagers with that allergy.”
It was key to build children and teens’ confidence so it overcame their fear. Food challenges were useful in that respect, said Dr Turner, but becoming proficient in using an adrenaline injector was even easier.
“If they can use that EpiPen and it doesn’t hurt, then all of a sudden a lot of what causes their anxiety begins to be dismantled. That’s something you can do in two minutes in clinic, and it doesn’t have to be a four-hour food challenge. The impact on our families is amazing.”
It was also powerful for parents to see their children injecting themselves, to challenge possible memories of their child being distraught while their parents injected them when younger.
The aftermath of an anaphylactic episode, the thing most feared, was a good time to emphasise the ability to manage allergies.
Clinicians could get on their teenage patients’ side and work with them to help prove to their parents that they can manage, said Dr Turner.
Sharing stories about how people lived their lives with a food allergy was very helpful for parents, said Mrs Brandner.
“My [now adult] anaphylactic child is out getting drunk in Europe somewhere,” Ms Brandner tells parents of newly diagnosed children. She said parents often audibly gasp in response, but she tells them it was more likely he’d be hospitalised for falling off a moped or drinking too much than for eating something.
Telling those stories was important, she said. Otherwise, parents would only hear about management plans and the worst possible outcomes.