A Little Bit Can Hurt (11 page)

Megan is seven years old and the oldest of three girls. Her favorite subject in the first grade is Reading. Active and outgoing, Megan loves playing with her friends and riding her bike. She plays soccer and enjoys swimming, ice skating and dancing. She loves all kinds of music, and her favorite food is chicken.

T
o this day, Megan's parents don't know what triggered her life-threatening allergic reaction at daycare. Only two-and-a-half years old, Megan had been attending daycare for just two or three months when she suddenly suffered a severe allergic reaction. Megan's mother Suzanne recalls the daycare staff told her Megan became very flushed, had a rapid pulse and was gasping for air. She has asthma, so her respiratory symptoms that day were particularly alarming. Although her teacher didn't know what had provoked Megan's symptoms, she wisely concluded that Megan was suffering a severe allergic reaction. The teacher hurried the little girl to the daycare director who concurred with the teacher's assessment. Megan's teacher made a quick decision to administer Megan's
epinephrine but failed to remove the auto-injector's safety cap at first. She quickly recognized her mistake, removed the safety cap, successfully injected Megan with her epinephrine and called 911.

At the hospital emergency room, the physicians concluded that Megan was suffering a severe allergic reaction and administered asthma medications to treat her respiratory symptoms. They kept her under observation for four or five hours. Fortunately, Megan suffered no measurable ill effects. However, she does remember the incident was "pretty scary!" Despite the initial mishandling of the epinephrine auto-injector, Suzanne was very pleased with the prompt, professional response of the daycare staff.

Before her daycare emergency, Megan experienced her first allergic reaction when she was twenty months old. Suzanne had given Megan a peanut butter and jelly sandwich. "She took one bite, nibbled and pushed it away." Perplexed, Suzanne wondered, "What kid doesn't like peanut butter and jelly?" She lifted her daughter out of her high chair and put her down to play. Shortly after, Suzanne looked at Megan and was horrified to discover she had "hives all over her face, just poufy, poufy hives. On her trunk...she was just kind of broken out."

Suzanne thought Megan was reacting to the jelly because Suzanne incorrectly assumed that if the peanut butter was the culprit, Megan would also be suffering breathing problems. Nonetheless, Suzanne called the pediatrician right away. He told her to give her daughter Benadryl
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and come to his office immediately. Given the scenario and Megan's symptoms, the pediatrician suspected an allergic reaction and promptly referred her to an allergist for testing.

Three days later, Megan was diagnosed with multiple allergies to peanuts, tree nuts and eggs. In hindsight, both Suzanne and her husband Joe remembered that on separate occasions Megan had pushed away both peanut butter and scrambled eggs when they were served. Suzanne theorizes, "It's almost like something inside her body knew...Something didn't feel right, and she pushed it away."

When Megan was diagnosed, the allergist provided Suzanne with informative resources, but she still felt afraid and alone. She elaborates, "...I really felt scared like I was the only one going through this thing...I just didn't know what to do... [I was] so very confused, very upset." She says she worried about how she was going to raise Megan safely in light of her multiple food allergies. Suzanne credits
Megan's allergist for being available by phone and helping her to "keep everything in perspective."

Five years later, Megan is now in the first grade, and her parents have grown more comfortable with managing her multiple food allergies. However, they have encountered many challenges including skepticism and a lack of understanding from Megan's grandparents. While they enjoy the company of their grandchildren and want to have fun with them, initially Megan's grandparents didn't take her food allergies seriously. Suzanne explains, "They didn't want to deal with it. [They thought] it couldn't be happening, and I think it took Megan's reaction to snap them into [awareness]."

Before the daycare incident, Megan's grandparents kept nut products in their home within her reach and often bought candies that were not safe for Megan. One grandparent said she wouldn't be able to give Megan her epinephrine if she needed it, and Suzanne replied firmly, "Then you won't take her out." Suzanne recognizes that the epinephrine auto-injector can be intimidating but insists upon its lifesaving importance to Megan. She asserts, "...It is a scary thing. I've never had to use the [EpiPen
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]. Hopefully I never do. But let me tell you, if I have to? No problem."

Fortunately, as a result of Megan's serious allergic reaction at daycare plus food allergy stories profiled in the media, her grandparents became better informed and careful to avoid exposing Megan to the foods that are dangerous to her.

After Megan was diagnosed with multiple food allergies, her parents opted to secure their own vacation accommodations instead of sharing with the extended family. This arrangement afforded Suzanne and her husband more flexibility for their three children and helped them to minimize the risk incurred to Megan when extended family members brought unsafe food. In addition, this arrangement benefited extended family members by providing them the freedom to enjoy on their vacation premises whatever foods they wished without jeopardizing Megan's safety.

When Megan and her family are invited to a party, Suzanne speaks with the hostess in advance so she and her guests aren't inconvenienced during the event. At the party, Suzanne takes time to peruse the buffet table for safe and unsafe food. Cautious about her daughter's safety but reluctant to impose upon the hostess, Suzanne says, "I want them to be aware, but it's my issue. I will deal with
it...I don't want it to be other people's problem. I want them to be compassionate. I want them to work with me. But I don't expect somebody to have a party and rearrange their whole party because of me...If I really, truly feel uncomfortable, we don't go."

Their neighbors have been particularly kind and accommodating. For example, they provide Megan with special treats at Halloween. At cookouts, they ask guests not to bring nuts. If guests arrive with foods that are not safe for Megan, her neighbors move those foods to a separate area. Joe says the neighbors "tell everybody there she has an allergy and don't feed her anything without her parents knowing."

This level of awareness has taken time to develop. Early on when Megan had just been diagnosed, Suzanne was not as aware or as careful about Megan's food allergies. She would often walk around the neighborhood or go to the mall with Megan and neglect to bring her epinephrine auto-injector. It wasn't until Suzanne began attending food allergy support group meetings that she became aware that Megan's epinephrine must remain with her at all times. Suzanne emphasizes to Megan, "Wherever you go, it goes," and Megan affirms in response, "Pretty much everywhere."

While Megan was enrolled in an aftercare program for elementary school students, Suzanne had a rude awakening when she asked one of the staff where Megan's epinephrine auto-injector was. She wanted to check the medication's expiration date. Much to her dismay, the staff member couldn't locate Megan's epinephrine. Suzanne recalls, "That was an eye opener...I was scared [by] the amount of time it took to find the EpiPen
^®
..." This experience reiterated to Suzanne the need to be vigilant about making sure that the individuals responsible for Megan at school and daycare understand her emergency action plan and have immediate access to her epinephrine auto-injector.

Now seven years old, Megan is very careful about the food she eats. Suzanne explains, "She knows, she asks, she sees...She's always been very conscientious, picky, which has been very good in this situation." At school, Megan sits at a peanut-free table with one or two other children because her school is not peanut free. This safety measure makes Megan feel safe because, she says, "People are around me, but not, like, real close." In addition, Megan's classmates wash their hands after lunch, a practice which helps to minimize her contact with food allergens. In addition, her teacher is careful to keep her safe.

Megan's elementary school has many students with food allergies. Suzanne says, "I think the nurses and the healthcare professionals in the schools are very well trained. They seem to have their procedures down." Even so, mistakes do happen. Suzanne recalls the story of another food-allergic student in Megan's school who, despite remaining safe throughout the school year, ate an unsafe cookie on the last day of school. Realizing his mistake, the student alerted his teacher and was successfully treated.

Overall, Megan has enjoyed a supportive experience with her food allergies at school. She says that her teacher is conscientious about bringing her epinephrine auto-injector on field trips and keeping it nearby in the classroom. She has not been teased or bullied by other children. Suzanne exclaims, "The kids are their best defense. The kids help the kids!" Another mother once told Suzanne that her son told her he couldn't eat peanut butter anymore because Megan is allergic to it. The mother replied to her son, "Honey, but it's Saturday. You're not near Megan."

Although Megan generally takes her food allergies in stride, Suzanne admits, "It still gets a little sad though. She has her moments...It's usually at a party...All of a sudden, she wants the cake, and she can't because we don't know where it came from." In anticipation, they bring a safe alternative such as a popsicle, but this doesn't always suffice to pacify Megan. Joe continues, "All of a sudden you'll look at her, and she's almost in tears, and you go over to her." Megan complains, "I can't eat the cake" and "I don't want to have allergies." Her parents talk her through her upset, and in about ten minutes she bounces back. Joe admits however, "That's the hardest [part]."

Megan claims there's not much she can't do because of her food allergies. She says the worst thing about her food allergies is that she doesn't get to have many desserts and has to read all food labels. She adds, "I don't really eat that much food and everybody else does." Suzanne reassures her daughter, "You're special, honey." Megan replies with a big smile, "I know that. You've told me, like, a thousand times!"

Five years after her daughter's diagnosis, Suzanne says, "I feel more comfortable...I feel more confident. I think being part of a larger support group has helped enormously." Joe agrees, "I feel more comfortable just being more educated." Megan's parents recognize that her ability to read, ask questions and begin to take responsibility for her food allergies all help considerably to keep her safe.

Suzanne is "confident that we are teaching [Megan] to be cautious, but not to be afraid." She hopes that as Megan gets older she will "be a good steward of this. If she could bring this [experience] and educate others about it in the future, I think that would give her purpose and more of an understanding about her food allergies...Maybe she can come to terms with why she is food allergic. Maybe she'll do something positive."

Suzanne asks parents of children who do not have food allergies to "be understanding and compassionate...And if you really don't know, ask. Don't assume. Don't assume you know when maybe you don't." She understands very well the inconvenience of avoiding nuts and nut products but hopes other parents recognize that respecting nut restrictions "could save somebody's life."

Suzanne's advice to other parents dealing with their child's new food allergy diagnosis is to develop a "good relationship with their allergist. Get a support group, and don't think this stops your life. You can go out to dinner. You can be smart about it. Don't let it run your life..."

POSSIBLE NEXT STEPS:

1. Have you considered inviting skeptical family members to attend doctor appointments or giving them a subscription to a food allergy magazine or membership to a food allergy organization?
   
2. Does your child have two epinephrine auto-injectors accessible to her at all times?
   
3. At home, school and elsewhere, do you routinely check the location and expiration dates of your child's epinephrine and other necessary medications?
   
4. If you feel overwhelmed and confused by your child's food allergy diagnosis, have you spoken at length to her allergist?
   
5. Are you teaching your child to manage her food allergy without fear?
   

12

ZACH

Practice Makes Perfect

Baseball, football, martial arts. You name it; 10-year-old Zach plays it. Zach loves everything about sports and dreams of becoming a professional athlete, sports doctor or announcer. He's an accomplished athlete who has already earned his black belt in Tae Kwon Do in addition to a number of team trophies. Beyond sports, Zach is actively involved in the arts. He sings in the chorus, plays the saxophone and has clinched the lead role in his school play the past two years. From any angle, Zach is a dedicated and talented young man.