Your Child and Food Allergy Fear and Anxiety
The experts say well-meaning parents often say too much, too soon to their children about the risks of food allergies. The result: more and more kids with allergies – and anxiety. This special report, first published in Allergic Living magazine in 2008, explores the line between caution and fear.
YOUNG Devon used to love food, but no more. Following some upheaval in her 8-year-old life – a move last fall from Toronto to scenic Woodstock, New York, and an allergic reaction in a restaurant in the new town – Devon has developed serious food “issues”.
The girl, who’s allergic to peanuts and tree nuts, no longer even trusts her mother’s cooking. Daily, she pulls food packages out of the garbage to triple-check the ingredients for allergens. She’s so fearful about what fellow classmates might eat that her mother, Anna Ross, must physically remove her daughter from the car when taking her to school.
“It’s a drama, it’s tears, it’s dragging her up the walkway and handing her off.” Sometimes, the girl will wear her gloves all day to avoid touching anything in the classroom.
But Ross doesn’t attribute her daughter’s obsession only to the restaurant reaction, which was moderate (swelling of the throat and lips), or the move. These were contributing factors. Ross suspects it was her own efforts to educate a new school community and classmates about the seriousness of food allergies and the need for vigilance that got the wheels churning in her daughter’s head.
During a quick session in front of Devon’s class, curious kids put up their hands to ask: “Could she die if she ate a nut?” While Ross played down the possibility, Devon, at the age of 8, was listening with a new attentiveness. Today, the girl expresses a fear of dying and is seeing a child psychologist, while her mother suffers guilt about whether she said too much in front of her.
In an e-mail to Allergic Living, Ross asked a heart-wrenching question: “should an 8-year-old have to fear her mortality like that?”
She is not alone in her worries. Increasingly, parents are noticing that what they say and do to manage a child’s food allergies, even their very demeanor on the topic, affects the child’s sense of security – or lack of it. Through our e-mail registry, Allergic Living asked parents how they spoke to their food allergic kids about anaphylaxis, and if they had concerns that they might be scaring them, in addition to teaching them precautions.
The topic clearly struck a chord, with over hundreds of responses arriving in a few days. Many spoke of the tough balancing act of instructing a child to always be vigilant about avoiding allergens, to not eat unknown foods, to have an auto-injector at the ready at all times, to communicate concepts such as cross-contact in food preparation, but not to tip the child over the edge into fearfulness and take away the joy of being a kid.
Unfortunately, the balance quite frequently does tilt to anxiety: the mother of a girl the same age as Devon referred to her peanut-allergic daughter’s “fear and extreme sense of self-protection.” Several parents spoke of turning to the “fear factor” about anaphylaxis to drive home to young allergic kids that they have to be careful around food. But conflict about the impact was evident.
One mother related that her son was so “stressed out” about his peanut allergy that she had him tested for an ulcer at the age of 9 (he didn’t have one). Reader Kimberley McNabb spoke of her 10-year-old’s refusal to eat even safe foods at friends’ homes. While she thinks nothing is more important than being prepared to deal with a serious reaction, she added: “my hope is that I haven’t instilled a fear in my son that in future only adds to the stresses of the risk of anaphylaxis.”
When it comes to food allergies,“there is so much anxiety,” says Dr. Zave Chad, an allergist and former head of the allergy section of the Canadian Pediatric Society. He notes that there does not appear to be nearly as much stress among children and parents coping with asthma – and yet there are far more deaths caused by that disease than by anaphylactic food reactions.
Beth Goldstein, a social worker in private practice who provides counseling for families with food-allergic children, expresses concern that anxiousness surrounding allergies can affect children’s confidence and how they’ll live their lives. “If they are afraid, I’m not sure they will reach their potential, they could hold themselves back from opportunities.”
The Trouble with
So how did we reach the point where the manner in which we teach children about one serious condition can lead to a level of anxiety that’s not healthy? Experts think it may start with how we explain food allergy to others. “If you listen to the way some parents talk,” says Laurie Harada, executive director of Anaphylaxis Canada, “they say, ‘this could kill him’ or ‘bringing a peanut butter sandwich to school is like bringing a loaded gun.’
“It has great visual effect, but often the child is within earshot, and is that the image you want your child to have?”
Chad agrees that such terms can be harmful. “Back in the early 1990s, in the days when people thought food allergies were ‘in your head’ and people were not buying into the seriousness, discussing the potential for severe reactions was very useful,” he says. “It galvanized the community, it got people working on this. But I think the pendulum has now swung a little too far the other way.”
He says emphasis on severe reactions can frighten parents and that affects how they communicate with the community – and their children. “Kids pick up on the anxiety of parents extremely quickly,” Chad says. “The parent who is over-anxious is not helpful to their child.”
Jill Fraser became so stressed about her son’s allergies that she lost sleep, felt tension in her shoulders and jaw, and stepped up control over her allergic child, who was not sleeping well either. Fraser’s son, Harper, was found to have a milk allergy, then later, at 18 months, a peanut allergy.
With the peanut diagnosis, Fraser cried at the pressure she felt to keep her little boy safe. At first, she wouldn’t even take Harper down the supermarket aisle where peanut butter was on the shelf. Fraser had more reason than most to worry; a childhood schoolmate had died from an accidental exposure to peanuts.
But she even became worried that the boy might react to other major allergens: from shellfish to sulfites to stinging insects. For a time, Harper was afraid of playing in the grass because of bees. She was trying to control her son’s every movement. “I over-controlled regular things to make up for this monster (anaphylaxis) that I could not control,” she says.
Talking to a psychologist helped, causing her to realize that she was over-compensating. Fraser is still vigilant about managing her 4-year-old’s allergies, but feels a greater sense of calm. Both she and Harper are sleeping better, and she speaks to him in a more relaxed fashion.
For the first time, she’s even hired a non-family member to care for her two kids while she’s at work. Her anxious parenting had caused some tension with her husband (whom she found “too care-free”). But now “we are functioning better. We have more common ground with our strategies for parenting.”
What causes high anxiety in parents, which gets passed on the kids, is the fear that a child might die from an anaphylactic reaction. Such fear can be so visceral that it puts the primal need to protect into overdrive. But just as physicians are encouraged to “heal thyself,” some parents need to learn to “calm thyself ” – and look more closely at the allergy facts, which offer some reassurance.
First, despite a doubling of the incidence of food allergies in North America in a decade, deaths from anaphylaxis are still uncommon. (Thanks in part to better awareness and preventative measures.)
Second, Chad says allergists now have improved knowledge from fatality studies of the profile of the person at a higher risk of a life-threatening reaction – and it is not every person who tests positive to food allergies. Those with asthma, especially adolescents, fall into a higher risk category, and a previous anaphylactic reaction also increases risk.
The statistics make Chad’s point: a U.S. study published in the Journal of Allergy and Clinical Immunology in April 2007 examined 31 food allergy deaths and found that most who succumbed were again teens or young adults,most of whom were not carrying auto-injectors and had eaten away from home. In Canada, a study published in 2001 reviewed deaths in Ontario from anaphylaxis to food over the previous 14 years. There were 32 fatalities, mostly among teens and young adults who also had asthma, and peanuts and tree nuts were the allergens most often implicated.
In all the cases for which medical history was available, the person had also been asthmatic. As a prevention strategy in children who do fit the at-risk profile, Chad opts for “superb asthma control,” as well as vigilance about good allergy practice: carrying epinephrine at all times, allergen avoidance, label reading and frequent hand-washing.
Safety Net to
But how can parents avoid this undue anxiety and instill caution without fear?
“We have to acknowledge that there are no easy answers,” says Dr. Jane Garland, a child psychiatrist and professor at the University of British Columbia, who heads the B.C. Children’s Hospital’s Mood and Anxiety Disorders Clinic in Vancouver.
But she says food allergic kids will take comfort if they know that the adults around them – parents, daycare workers, teachers or coaches – are well-informed about managing their condition. “That’s their safety net. Then they feel that the burden is not all on them,” she says. “That really reduces children’s anxiety – ‘somebody’s in charge here and knows what to do if there’s a problem.’”
Garland thinks getting a realistic estimate of the level of risk from an allergist is also a good idea. If the child does not fit the profile of those at greatest risk of an anaphylactic reaction, let him know, as that should offer comfort. If the risk is high, let the child know it’s still very manageable, and that the “safety net” is in place. She says a big part of child anxiety management, in any circumstance, is knowing the likelihood, and having the skills to deal with it.
Anxiety, unfortunately, is common in our modern world, even before food allergies are taken into consideration. Fifteen per cent of children are anxious just by temperment. “Since allergies are common and anxieties are common, there are going to be lots of kids who have both,” Garland says. Yet anxiety does have its place.
Next page: Kids’ brain development and anxiety