A Little Bit Can Hurt (9 page)

8

ROBERT

"We don't want them to die."

Two-and-a-half-year-old Robert is Charles and Amy's only child. According to his mother, "He's a funny little guy" who likes to build castles and play outside. Amy says he's even-tempered though admits "like all two-year olds, he has his moments." Also like many toddlers, Robert's favorite food is chicken nuggets.

I
n just two short months, Charles and Amy's family life has been turned upside down. Their two-and-a-half-year-old son Robert was diagnosed with multiple allergies to peanuts, tree nuts, fish, shellfish, sesame seeds and their family cat. Suddenly, their daily routine, eating habits, preschool considerations and even the fate of their family cat are in a state of flux. "It's a change in life," says Charles.

When Robert was diagnosed, Amy says, "I was devastated...I cried for a couple of days. You just don't want it for him...He's going to have to always think about [food safety]." In addition to their concerns for their son, Charles and Amy had to face the agonizing decision about whether to keep their cat, a pet who had been part of their family since before Robert was born.

How did these shocking circumstances unfold?

Amy recalls two incidents that made her suspect Robert had a food allergy. First, he tasted a peanut butter and jelly sandwich at a restaurant while they were shopping. Although Robert put his mouth on the sandwich, he refused to eat it. Shortly after, he started crying and his face and chest turned red. Amy recalls his abdomen seemed a little swollen, too. Because Robert has fair skin, he often turns red when crying so Amy passed off her son's upset as exhaustion from the day's busy activities.

The second incident happened at home when Charles tried to give Robert a taste of peanut butter. Once again, he refused to eat the peanut butter, but his skin became blotchy anyway. Amy called the pediatrician who directed her to give Robert some Benadryl
^®
. The pediatrician also prescribed an epinephrine auto-injector but recommended putting off allergy testing until age three. Fortunately, Amy had Robert tested before then so she was able to obtain a complete and accurate diagnosis of his multiple food allergies.

After Robert's diagnosis, his parents had to immediately contend with numerous questions and concerns about food safety, preschool and family gatherings. What foods were safe for Robert to eat at home? Could they continue to dine out as a family? In light of Robert's multiple food allergies, should they send him to preschool and, if so, where? How should they manage his food allergies among extended family?

Charles and Amy were extremely careful about what foods they brought into their home and what they ate while dining out with Robert. Although they ate out less after Robert's diagnosis, they did find restaurants to frequent and adjusted to dining out with Robert's food allergies in mind. Charles and Amy quickly learned to ask the restaurant chef questions about menu ingredients and food preparation. They inquired about what foods were cooked in the fryer so Robert wouldn't be inadvertently exposed to food allergens via cross contact in the fryer. At home, they called food manufacturers to inquire about ingredients and factory practices. Two months after Robert's diagnosis, Charles confides, "I would say the shellshock is still here. We're still thinking, 'Wow, all these things we have to consider [to keep him safe].'"

Now two-and-a-half, Robert is fast approaching preschool, but his diagnosis makes his parents wary and concerned about sending him. Homeschooling is not
an option for their family, however, so they have opted to send Robert to a nearby preschool both because of its proximity and the school's excellent reputation for being "allergy aware." Amy declares, "I'm not going to stop him from going...I'll just have to educate him [about his food allergies]...My job is to educate him."

Explaining Robert's food allergies to extended family was frustrating at first. Some of Robert's grandparents questioned the validity of his diagnosis. Charles explains the skepticism he and Amy encountered from Robert's grandparents. "...They're thinking, 'Why is this happening exactly? I didn't have it around me when I was younger.' They don't realize that [food allergy] is more of an epidemic today than it was back then...I think it's an initial frustration that we'll get over, but we just really need to enforce with our parents that 'Yes, this exists, and you have to really watch it.'" Fortunately some of Robert's aunts and uncles understand the severity of his food allergies. At family gatherings, they are careful to read ingredient labels, bring safe foods to dinner and provide safe candy for holidays such as Easter.

Following Robert's diagnosis, daily routines changed. Charles admits he found carrying the epinephrine auto-injector a nuisance sometimes. "You have to learn to carry the EpiPen
^®
. I'm a guy. I don't carry a purse. I don't carry a diaper bag. All of a sudden I've got this black thing hanging off my hip, and it's the EpiPen
^®
." Charles and Amy had several arguments about Charles forgetting to take Robert's epinephrine when leaving the house with him. Amy established a new practice of placing the epinephrine auto-injector near the door, and Charles became more consistent about taking it.

A couple of months after Robert's diagnosis, Amy's anxiety about her son's multiple food allergies has calmed considerably. She says, "I'm not as panicky about it. I was frantic. Now I know more. I know what he can eat. I was thinking he can't have anything. There's a lot he can eat. There's a lot he can have...I look at it as we'll eat a little better. You've got to look at the positive side of it."

Amy advises other parents of food-allergic children to join a support group "because you don't get all the information from your doctor...Find other moms and get good advice." She encourages parents of children who do
not
have food allergies to "approach me...Be more tolerant...Be more understanding." She concludes, "It's my kid. It's his safety. It's his life...We just do it because we love our children. We don't want them to die...We do what we have to; we educate ourselves."

POSSIBLE NEXT STEPS:

1. Have you taken advantage of books, DVDs, food allergy conferences and other resources to educate yourself?
   
2. Have you considered joining a local or online support group for your own educational and emotional support?
   
3. Have you identified the people in your child's Food Allergy Circle (parents, siblings, teachers, relatives, babysitters, etc.) and educated them about your child's food allergy?
   
4. Have you established safe routines such as reading ingredient labels and reminding family members to take necessary medications when leaving the home?
   
5. When purchasing food and dining out, are you aware that studies show most peanut-allergic individuals can safely eat peanut oil that has been highly refined? Consult your child's physician regarding his or her recommendation.
   

Section 3

CHILD - MIDDLE CHILDHOOD

5-10 years old

"Seek the wisdom of the ages, but look at the world through the eyes of a child."

~Ron Wild

S
chool-age children begin to form more complex relationships, and making friends is an important developmental step. They become less dependent on their family for socialization and spend more time with peers, a factor that may compound parents' fears for their child while he or she is away from home. Children learn to communicate with one another and share experiences.

Academic performance, athletics, popularity and peer pressure are common concerns of children in this age group. Social situations are often fun but may provoke anxiety about being different, an experience particularly true for food-allergic children. Navigating birthday parties and classroom celebrations can prove especially difficult as the food-allergic child may feel isolated or excluded. Being teased about having food allergies can be particularly hurtful. Learning to handle food allergies in the context of school, camp, extracurricular activities and social gatherings is a challenging lesson both the food-allergic child and parent must master.

Section Three portrays four school-age children courageously contending with life-threatening food allergies and increasing their independence. You will meet:

• Five-year-old Bryce who is having a difficult time feeling isolated at school;
  
• Jonathan, a cheerful third grader, who successfully manages his food allergies at school and whose family doesn't allow food allergies to curtail international travel;
  
• Megan whose reaction at daycare drives home the seriousness of food allergies to extended family; and
  
• Resilient ten-year-old Zach who manages his peanut allergy despite peer pressure and excels!
  

9

BRYCE

"I don't like it when I sit by myself!"

Five-year-old Bryce loves to ride his scooter and bike as well as swing on his play set. He plays soccer and enjoys playing ball with his one-year-old sister, Makenna. Bryce has a stuffed bear named Billy who is "allergic" to fish, cats, dogs, flowers, pollen and bees. Bryce himself has a number of allergies for which he wears a MedicAlert
^®
bracelet and carries an epinephrine auto-injector. But he explains that his bear Billy doesn't have either because "he doesn't have a mom!"

B
ryce is in kindergarten, and his favorite subject is math. He loves school and is fond of his teacher and classmates. His mother Kim was stunned when Bryce came home upset from school one day and blurted, "My friends had nut candy bars and I had to sit by myself!" Bryce is allergic to peanuts, tree nuts and eggs.

His school has policies addressing when and how parents may bring food into the class. This is why Kim was dismayed to discern from her son's account that,
against school policy, a parent had brought in chocolate bars for the children without speaking to the teacher in advance. Put on the spot, the teacher had permitted the unexpected treats and failed to enforce the policy. Bryce told his teacher that he couldn't eat the treat and didn't even like the smell of chocolate. For his safety, the teacher decided to place him at a table alone so that he wouldn't be near the chocolate.

Although the teacher assured Kim that Bryce was fine sitting by himself, he says, "It makes me sad to be by myself. I won't see anyone to talk to." Bryce explains that he sits alone whenever his class celebrates a birthday, "and I don't like it when I sit by myself."

This is precisely the scenario that Kim and her husband have worked to prevent for their son. At the beginning of the school year, they wrote a letter that the school distributed asking parents to contact them before bringing in treats so they could make accommodations for Bryce. This would allow them to ascertain if a treat was safe for their son. They could then let him know in advance whether he could enjoy the treat or should eat his own safe snack instead. Kim explains that in a class of almost thirty kindergarten students, only a handful of their parents have contacted her about snacks. "So that makes it hard," she says.

The school nurse has requested that students refrain from eating in the classrooms, but as with the official school policy, her request has not been heeded. To prevent Bryce from accidentally eating food that's unsafe for him, Kim proactively keeps safe treats for him at school. However, the necessity of this safety measure doesn't soften the blow when Bryce asks, "Why do I have to eat something different?"

Although difficult for Bryce and heartbreaking for Kim, the importance of remaining vigilant about food allergies and reading ingredient labels is exemplified by his latest reaction. Recently, Bryce ate a new, chewy version of a safe candy he often enjoys. A few minutes later, he complained that his throat hurt. Kim recalls, "At first I thought he was getting sick, like a virus or...a sore throat. I didn't realize it was what he had eaten, and then I realized he hadn't eaten those [candies] before. It was something new, and I checked the bag and saw egg albumin as the second or third ingredient on the list...So I gave him Benadryl
^®
and he threw up." In the meantime, she phoned Bryce's allergist who told her to go to the hospital. Fortunately at the hospital, Bryce was fine and
needed no further treatment, but they remained for several hours to make sure his allergic reaction didn't return.