A Little Bit Can Hurt (6 page)

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ARIEL

"Let me be close."

Influenced by her artistic grandmother, Ariel is a budding artist who enjoys painting with brushes on her easel. She also loves playing with her toy horses, climbing trees and swinging on the gymnastic rings at the local playground. Rain or shine, Ariel loves being outside. She is a daring and active girl who adores her little brother, ten-month-old Alex. The rambling, wraparound porch on her home provides the perfect spot for her and Alex to play outside.

C
athy sat nervously in her car in the parking lot of the preschool for her daughter Ariel's first few afternoon classes. She was thinking, "Let me be close." Not quite three years old, Ariel has life-threatening allergies to multiple foods including dairy and nuts. Her mother Cathy carefully chose a peanut-free preschool and was sure to explain Ariel's specific allergies, symptoms and course of treatment to an administrator and Ariel's teacher. Her teacher assured Cathy she knew how to administer an epinephrine auto-injector. As an extra safety measure, Ariel's preschool listed specific food allergies on the children's name
tags. However, Cathy remained anxious despite the school's safety protocols and her efforts.

The first couple of days went smoothly with a happy Ariel exhibiting no adjustment problems. Shortly after the start of school, however, a class party was planned. Cathy offered to buy all food for the party, but the preschool declined her offer explaining that other parents had signed up to bring food. So Cathy made safe snacks for Ariel and reminded her to eat only her own treats at the party. "...That day, we walked into the party. [Ariel] was real funny, and I just didn't pick up on it." Ariel told her mother she didn't "feel right." The teacher told Cathy that Ariel was simply having a difficult time adjusting and it would be best for Cathy to say goodbye and leave promptly. Although she felt uncomfortable, Cathy deferred to the teacher's expertise. Before she left, she reminded the director she would be in her car.

The parents were invited to join the party during the last hour of class, and Cathy arrived promptly at the right time. As she entered the room, she was horrified to discover her "little girl, one whole side of her face swollen, eye swollen shut. And the minute she sees me, she bursts out in tears and runs for me." Cathy grabbed her daughter, took her into the hallway and looked her over. Ariel said, "Mama, I feel dizzy. I don't feel good." Cathy had Zyrtec and an epinephrine auto-injector. She considered, "Does she need an EpiPen
^®
? Is her tongue swollen? Is she having any trouble breathing?" Deciding her daughter's condition was not life threatening, Cathy gave Ariel Zyrtec, understanding it might treat mild symptoms of an allergic reaction, such as hives, but would not treat anaphylaxis.

Cathy recalls that when she went back to tell the teacher she was taking Ariel home, the teacher told her Ariel's swelling resulted from crying. She called it an "adjustment reaction" for which Cathy was to blame because she hesitated to leave promptly at the start of class. Yet in contrast to the teacher's callous attitude, the other parents were concerned for Ariel's safety. "The parents could tell that there was something wrong," Cathy remembers.

As Cathy and Ariel were leaving, the director said, "...The teacher told me that you left inappropriately, and that's why your daughter's having an adjustment reaction." Furious, Cathy showed the director that Ariel's swelling was confined to one eye and one half of her face. If crying had caused the swelling, it would have involved Ariel's entire face. Cathy then picked up Ariel to depart and
noticed extensive hives on the backs of her legs. "I had realized as I was taking her out [of the classroom] that there was food from the morning class left on the floor...She was sitting on that. That's what was touching the back of her legs, touched her hand, and [then] she probably did rub her eye."

On the way home, Ariel developed nasal congestion. Cathy called her husband, a physician, and he told Cathy to give Ariel another dose of Zyrtec. Ariel fell asleep, and her father arrived home to check on her. He didn't think her condition required a trip to the emergency room, but that night, he kept close watch over Ariel, sleeping in her room. Her symptoms took days to resolve. In the meantime, no one called from Ariel's preschool.

In hindsight, Cathy thought the preschool teacher and director had acted thoughtlessly but not maliciously. Still, unwilling to risk her daughter's safety again, she called to inform the preschool Ariel would not be returning. When she phoned, she sensed the director's relief. Cathy was hurt by the actions and attitudes of the teacher and director, explaining, "...For me it was a lack of concern that something serious was happening to my daughter."

Long before her allergic scare at preschool, Ariel would vomit after every feeding as a breastfed newborn. A new mother, Cathy promptly took Ariel to the pediatrician who assured her the vomiting was normal and urged her not to overreact. However, "[Ariel] continued to throw up," and she had mild eczema, according to her mother.

Then, at two months of age, Ariel developed blood in her stool while on a family trip. Ariel's father took a photo of the bowel movement, and her parents showed her physician the photo when they returned home. The doctor said many children are sensitive to milk and recommended Cathy take milk out of her own diet while nursing. She admits, "I took milk out of my diet, but I didn't understand what that meant. Even being a healthcare professional, I didn't get it. I took out milk, I took out yogurt, I took out cheese, I took out all the obvious [foods], but I still was eating [foods] with whey or casein in the ingredients." Ariel's eczema cleared, but her vomiting continued with every feeding. She had not yet been formally diagnosed with any food allergy.

Once Ariel began eating solids, her vomiting diminished a little but did not completely abate. During this time, Cathy's mother was caring for Ariel during the day. Cathy and her mother were at odds about Ariel's dietary restriction
against dairy. Without telling Cathy, her mother had been feeding Ariel little bits of cheese "to try to build up her resistance," thinking she was helping her granddaughter become desensitized to dairy. Feeding a known food allergen to a child is dangerous and contrary to established medical advice that a food-allergic child should avoid his or her specific food allergens at all times unless the child's physician instructs otherwise. Still unaware that her mother had been feeding cheese to Ariel, Cathy shared some literature with her mother to convey the severity of Ariel's issues with dairy. At this point, her mother confessed she had been trying to desensitize Ariel. This motivated Cathy to consult an allergist and have her daughter formally tested.

At one year of age, Ariel was diagnosed with dairy and peanut allergies. Regarding her own growing understanding about her daughter's food allergies, Cathy recalls, "...I didn't understand it was a milk allergy per se. I knew it wasn't lactose intolerance, but I didn't really get it...Then we took her to the allergist and realized you have to avoid milk, casein, whey, anything produced on [manufacturing] lines that [have these proteins]...And so then we became a lot more vigilant, and it was miraculous. She stopped throwing up!"

Cathy says the full impact of what her daughter's food allergies entailed "was very overwhelming." The simple act of grocery shopping became a daunting, time-consuming task which initially took hours while Cathy read each food label at the grocery store. She and her physician husband argued about the painstaking precautions Cathy was taking while grocery shopping. One day, he went grocery shopping in her place. After that, he was better able to appreciate what the task entailed for Ariel's safety. With time and practice, Cathy has become much more efficient at grocery shopping for Ariel.

In addition to grocery shopping, challenges have also arisen during special events and celebrations. Birthday parties have proven stressful. Shortly after she was diagnosed with a milk allergy at age one, Ariel was invited to a birthday party. Cathy was still feeling overwhelmed about her daughter's newly diagnosed condition and remembers, "They were serving cake and ice cream. [Ariel] really had no interest [in dessert] at that point in time. She was still running around playing. But I was in tears thinking, 'How is she ever going to play and be with these kids?'"

More recently, Ariel attended a friend's birthday party. Cathy brought dairy-free cake and ice cream for Ariel to enjoy. As Cathy was preparing to serve Ariel her
safe desserts, another mother offered Ariel a piece of the birthday cake. Although Cathy politely declined, the other parent was offended and declared, "That's so rude!" Cathy began to explain Ariel's food allergies, but the other parent interrupted with a curt "Whatever!" and walked away. Later, the same parent approached Ariel to give her a drink. Cathy again intervened so she could first check the drink. "It's fine," the other parent insisted forcefully. As a result of this experience, Cathy cautions parents to beware of uninformed adults who become offended by food allergy precautions and may coerce a food-allergic child to eat something that is life threatening to him or her.

Visiting family and friends with children who are not food allergic has also been stressful. When Ariel is around food to which she is allergic, Cathy admits feeling anxious and uncomfortable. "I see my daughter sitting in the living room, and there's macaroni and cheese on the floor next to her...I'm paralyzed...Is it acceptable for me to say, ' I don't want that around. Can you feed [the kids] something different?' Or to just have to watch my daughter like a hawk, which is what I do."

Cathy's cautious approach to food allergy has directly impacted her diet during her second pregnancy and as a nursing mother to her ten-month-old son Alex. While expecting and breastfeeding Alex, Cathy has adhered to a strict diet in hopes of preventing him from developing food allergies. She consulted an allergist who recommended she avoid certain allergenic foods while nursing Alex in the first three months although many allergists no longer recommend such avoidance measures to prevent food allergy development. Cathy, however, continued restricting her own diet until Alex was six months old because she didn't see the allergist again until that time. The allergist urged her to begin adding the allergenic foods back into her diet, so she added eggs. When she did, Cathy recalls, "[Alex] seemed like he had diarrhea, and I just don't know if it was coincidence or I was looking for stuff. But now I'm just honestly scared, and I'm just going to wait until I get the testing for him."

Cathy's limited diet is particularly difficult to manage during business meetings and travel. She finds it awkward to ask a waiter multiple questions about food ingredients and preparation in front of colleagues and clients. Rather than explain her dietary restrictions, she simply allows others to assume she's a "health nut." Unfortunately, Cathy's restrictive diet has resulted in weight loss that hasn't been healthy for her.

Since Ariel's diagnosis, Cathy says her feelings have "waxed and waned...There are days when I think, 'Why do we have this?' And it's such a challenge. I think we do a good job of managing day to day at home, but then how is she going to go to school?" Because of Ariel's allergic scare in preschool, Cathy is fearful about enrolling Ariel in another program and explains, "I just can't take that risk...This can be life or death." Concerned about their daughter's socialization, however, Cathy and her husband have been visiting co-ops and preschools. They have yet to make a decision.

Although Cathy has vivid memories of her daughter's terrifying experience at preschool, Ariel seems unscathed. A happy and resilient girl, she loves to play and is friendly and engaging. Her mother lovingly describes her as a "very dear and very sensitive" big sister who adores her little brother Alex and takes good care of him.

POSSIBLE NEXT STEPS:

1. Have you provided your child's daycare or school with a food allergy action plan to follow in the event of an accidental exposure? Does that food allergy action plan adequately explain the
   symptoms
   of an allergic reaction? Go to
   www.foodallergy.org
   to download a model food allergy action plan.
   
2. Do you have the necessary medication to treat a reaction? Do you understand how and when to treat an allergic reaction? Have a thorough conversation with your child's physician so you understand your child's food allergy action plan.
   
3. Have you made arrangements to bring safe foods to social and business events so that you and your family may participate?
   
4. Have you taught your food-allergic child how to politely but firmly refuse unsafe food?
   
5. If you are an expectant or nursing mother, have you consulted your physician regarding whether current medical guidelines recommend dietary avoidance measures on the mother's part to prevent her baby from developing food allergies?