FeaturesOct/Nov 2009 Issue

Food-Allergic Children and Their Emotional Wellbeing

Emotional Wellness for Allergic Kids

VIDEO BONUS!

Four-year-old Daniel Clowes sat quietly by himself, alone in a schoolroom full of excited preschoolers. The class was happily celebrating a birthday and everyone was digging into colorful cupcakes piled high with frosting and sprinkles. Everyone except Daniel. Instead, the teacher handed him a bag of gluten-free pretzels and a bottle of water. The doleful look on Daniel’s face told his mother all she needed to know about how he was feeling.

This was one experience for Daniel, now 8, who’s allergic to milk, wheat, egg, tree nuts and peanuts. All youngsters with anaphylactic allergies encounter similar scenarios countless times throughout their childhood.

“Whether it’s a holiday meal or a class party, sooner or later food allergies take their toll. These kids want to be able to grab a cookie from the buffet table like everyone else,” says Daniel’s mother, Gina Clowes, founder of an online support group (allergymoms.com) and chair of the Food Allergy Initiative (FAI) advocacy steering committee. “There’s an obvious need to care for our allergic children’s physical health but their emotional well-being is equally important and often overlooked. As parents, we need to nurture their hearts and souls, as well as their bodies.”

The psychological aspect of anaphylaxis is a critically important component to raising children who are well adjusted and who grow into emotionally healthy adults and yet it hasn’t received much attention from experts. Coping with emotional fallout can be as challenging as managing any other aspect of a child's allergy.

What Kids Feel
Youngsters typically experience a range of emotions associated with their allergy —fear, sadness, anger, a sense of loneliness and “feeling different.” But the two primary feelings are anxiety and depression.

According to Rhian Morcott, MD, a child and adolescent psychiatrist in Lake Forest, Illinois, there are a number of factors that can heighten or diminish these emotional experiences.

1) Temperament. A child who is timid or anxious by nature will need more coaching and reassuring to ward off anxiety. A child who is not naturally apprehensive may need parents to instill a sense of caution.

2) Experience with allergic reaction. A child who has lived through full-blown anaphylaxis is more likely to become anxious about his allergy.

3) Age (developmental stage). Parents should frame the allergy in age-appropriate ways, educating in the fundamentals of safety during early years and gradually allowing more responsibility as the child matures.

4) Parental attitude. Parents should focus on building their own confidence and competence in relation to their youngster's medical condition in order to keep from passing negative feelings on to their child. Are you apologetic rather than matter-of-fact when explaining your child’s allergy? Are you panicked rather than self-assured when your child’s classroom has a party? If parents demonstrate sensible caution balanced with healthy confidence then their child is apt to follow suit.

“Children are always watching us for clues on how to act—always,” says Nadine O’Reilly, a school psychologist who lives in Harrington Park, New Jersey. “Even if parents are shaking inside, they should keep a calm exterior to allow their children the opportunity to accept their condition without apologies or feelings of inferiority or fear.”

Anxiety
When Bryan Bunning was 4, he experienced anaphylaxis after eating a gummy worm from a bulk container. Bryan, who is allergic to eggs and tree nuts (he outgrew a milk allergy when he was 11), was rushed to the emergency room where he was treated and released. The experience left him so frightened that his eating habits changed dramatically. Overnight, he became a picky eater and would only consume a short list of safe foods.

“The closer a child comes to full-blown anaphylaxis, the greater the chance that there’ll be anxiety related to food allergy,” says Morcott, adding that an experience in the emergency room can be traumatizing for children.

According to Morcott, anxiety is the most common psychological reaction to food allergies. “When anyone is dealing with something that is potentially life-threatening and can’t control all the variables at any one time, there is potential for anxiety,” says Morcott, whose 12-year-old son Trevor is allergic to peanuts, shellfish and tuna.

“Children with allergies, especially those associated with severe anaphylaxis (most typically peanut or other severe food allergies or allergies to insect stings) are often anxious and are increasingly coming to the attention of child and adolescent psychiatrists,” write Suneeta Monga, MD, and Katharina Manassis, MD, in an article published in the Journal of the American Academy of Child and Adolescent Psychiatry.

Bryan Bunning, now 15, gradually built up his food repertoire again but the experience prompted the Bunning family to adopt what Bryan’s mother Denise Bunning calls the “Rule of Three.” They read a label three times before one of the children eats a product—at the store, when it is put away and when it is about to be consumed. Bunning turned Bryan’s life-threatening incident into a valuable learning experience and put safeguards in place. By doing so, she gave Bryan reassurance and a sense of control.

Depression
Brendan O’Reilly, 7, keenly feels the limitations his allergies place on his world. Allergic to peanuts and nuts, he selects candy at the supermarket only to read, “May contain peanuts or tree nuts” on the label. At school, classmates celebrate special events with donuts and cupcakes, treats that are off-limits for him.

“His disappointment is palpable,” says Brendan’s mother Nadine O’Reilly. Recently, Brendan’s classmates enjoyed three food-centered activities in one week while he could only watch. “He used to be okay with that but as he gets older, I notice that it’s bothering him more,” O’Reilly says. Brendan complains and calls it “unfair.”

O’Reilly listens with empathy and understanding as Brendan expresses his disappointment. Then modeling a positive attitude, she reminds him of his special qualities and talks about delicious options, such as an allergy-friendly cake mix she plans to prepare. Thus, she validates his feelings while reminding him of enjoyable possibilities.

When to Worry
Kids want to be part of the group and don’t want their allergies spotlighted. As young children become teenagers, feelings of isolation,“being different” and being excluded can morph into sadness and deepen into depression.

How do parents know when their child’s anxiety or depression requires professional help?

“Look for a degree of severity in terms of their worry, their depressed mood, or a loss of pleasure that it is occurring with a degree of regularity. Are you seeing some significant impairment in different aspects of their life?” Morcott explains. Is the anxiety or depression affecting schoolwork or interaction with peers and family members?

“If you see a heightened increase in symptoms and you start to see impairment in different aspects of your child’s life, you should get support and professional assistance, which can include cognitive behavior therapy, family therapy and stress management,” she says.

Help for Your Child
In addition to being positive role models, parents should be a safe harbor for their children. That means they should strive to be empathetic listeners, and provide reliable and unwavering support. A child’s feelings of fear or sadness, isolation or anger should be validated with kindness and understanding. “This is about ‘getting it,’ not fixing it,” says Morcott.

At the same time, parents should encourage a positive perspective and a can-do attitude. “Reward your child’s good allergy management and frame it in terms of maturity,” says Morcott.

Parents should become educated about their child’s allergy and also be sensitive to the allergy’s impact on other family members.

Here are healthy ways that parents can help their children deal with emotions while educating them about food allergies.

  • Books and Music. A good story, whether it’s told in words or music, has the power to heal. After Brendan O’Reilly experienced anaphylaxis when he was two, his mother Nadine O’Reilly created a bedtime tale of a peanut-allergic character named Peter. At the time, there weren’t a lot of books available to help Brendan frame the life-threatening experience.

“How does one teach a toddler that his life might depend on not sharing food with friends? The whole concept goes against what we’d always taught him was ‘good manners,’ she says. After hearing about Peter on a regular basis, Brendan became less frightened and began to self-advocate.

“It was amazing,” says O’Reilly, who turned the story into a book, Peter Can’t Eat Peanuts (O'Reilly Publishing).

When her sons Bryan and Daniel were young, Denise Bunning read books to them to help them develop a healthy perspective on their medical conditions. Daniel, 13, is allergic to milk, tree nuts, shellfish and beef.

“I was constantly reading to them —anything involving any kid who was different, not just food allergies,” says Bunning, cofounder of Mothers of Children Having Allergies (MOCHA), a Chicago-area support group. “I wanted them to understand that there are lots of people who are different and that’s okay.”

  • Role Models. Find a hero for your child, someone who has experienced adversity and overcome it. Introducing youngsters to others with life challenges puts the allergy in proper perspective.

Gina Clowes points to successful food-allergic adults, such as NHL star Tom Poti, in her book, One of the Gang (AuthorHouse), to encourage children to not let their allergies hinder them.

Canadian Kyle Dine created a superhero (Epi-Man) in a song on his CD about food allergies, You Must Be Nuts! The 26-year-old musician, who is allergic to peanuts, tree nuts, eggs, cod, salmon and turmeric, began writing songs about allergies after experiencing a serious anaphylactic reaction. Now his music helps young children respond to their allergies in positive ways.

“Every child is limitless in potential—allergic or not,” says Dine, who is founder of allergytranslation.com, a service that offers custom dining cards for special diets.

  • Role Play. Practice real-life scenarios so that your child knows what to say and how to behave in challenging circumstances. When her son was young, O’Reilly pretended to be a classmate offering him a cookie. The two would rehearse various comebacks until he was comfortable with all possibilities.

Denise Bunning used a play kitchen to instruct her youngsters about food and how to talk with others about safe choices.

Giving children age-appropriate information about their medical condition and teaching them language to navigate their circumstances brings a sense of control and alleviates anxiety.

“The more children and parents practice together and become aware of possible risks and scenarios, the more prepared they are to manage them,” Dine says.

  • Creative Solutions. Work closely with your child to creatively solve problems and develop fun alternatives to forbidden foods. Daniel Clowes’ allergies prevent him from eating pizza, hot dogs, cake and ice cream, which made it hard for him at birthday parties. So Daniel and his mother, Gina Clowes, put their heads together to come up with attractive options. The collaboration empowered Daniel, giving him opportunities to make good decisions on his own behalf.

“Daniel gets to choose the foods he takes to a party and even brings his own shaker of sprinkles for decorating his safe cupcake,” Clowes says. “A kid with his own sprinkles is the envy of the whole party.”

When her children attended birthday parties, Denise Bunning bought enough popsicles for everyone so that all the children could enjoy what her sons were eating. “Thinking ahead and being creative helped immensely from my kids’ standpoint,” Bunning says. “It helped them handle different situations and encouraged emotional maturity.”

  • Safe Outlets. Give your child the tools he needs to express how he is feeling. Find healthy ways to blow off steam. For example, parents can provide a punching bag so a child can release anger and frustration, as well as give him time to express disappointment and loneliness. Outdoor play, drawing pictures, reading are all ways to cope with feelings. Sharing stories about your own feelings when you were young can encourage your child to open up about hers.
  • Friendships. “It’s important that parents encourage healthy friendship. Peer relationships become more critical as children age and parents have less control,” Morcott says. “At some point, parents will have to pass the baton.”

Often, just one good friend is enough. Trevor Morcott’s best friend is Daniel Bunning. The two boys relate to each other’s medical conditions and have surrounded themselves with others who understand their food allergies and know how to respond should there be a reaction.

Joining a local support group can provide enormous emotional benefits. Children can befriend those with similar conditions, share their stories and feelings and know they’re not alone.

  • Another Focus. Don’t allow allergies to define your youngster. Observe your child’s strengths, promote his skills and talents, encourage him to participate—and help him to excel—in activities that he enjoys. Your child has a food allergy; the allergy doesn’t have him.

“Yes, it’s a part of life that these children can’t ignore. They have to be pragmatic and have a level of responsibility about it—but it’s not who they are,” Morcott says. “Parents should focus on what kids can do, not what they can’t. Allergic kids can be confident, content individuals.”

“The most important message that parents can give kids is one of hope,” says Clowes. “Although kids must manage their medical condition, having a food allergy is just one part of who they are. It need not stop them from living the life of their dreams.”

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