A Little Bit Can Hurt (7 page)

5

AIDAN

The Aidan Manual

Just over a year old, busy Aidan is adept at imitating his parents. He loves to sweep with a broom and mow the lawn with his toy mower. He is fascinated by the garage, which he thinks is his Dad's play room. In fact, the second word Aidan mastered was "garage." He begins and ends every day by saying "good morning" and "good night" to his father's tools and equipment stored there.

B
orn two and a half months premature, Aidan was "a little surprise," according to his mother Amy. She confides, "We've had some challenges, but for all his challenges, he really has a good personality."

When Aidan was eight months old, his family was vacationing at the beach and introduced creamed spinach to Aidan. Amy recalls, "...His face broke out around his mouth with...welts, and at first we thought it was because we had used a paper towel that had print on it. We thought maybe the dye had broken him out." Amy reported this reaction to Aidan's pediatrician who suspected food allergies. Soon
after, Aidan underwent skin and blood testing. His results indicated an allergy to milk and sensitivity to eggs and peanuts.

Rather than feel overwhelmed by Aidan's food allergies, Amy felt energized and hopeful now that she had a plan for feeding him. She sought out a friend whose child is severely allergic to peanuts and got suggestions from her. Getting up to speed with Aidan's food allergies was "a process," Amy recalls, but the doctors were very reassuring.

Keeping Aidan safe in light of his multiple food allergies was also a learning process for his extended family. One time, Amy and her husband went on vacation and left Aidan with his aunt and uncle. After putting Aidan to bed one night, they decided to enjoy ice cream with peanuts while relaxing in the living room. Lying in bed later, Aidan's uncle suddenly sat up and exclaimed, "Nuts!" He ran downstairs and vacuumed the whole house including all rugs and furniture. As an extra precaution, he swept all the hardwood floors because he was concerned that if a peanut had landed on the floor, Aidan was sure to find it.

Fortunately Aidan remained safe during his visit with his aunt and uncle. His aunt later shared this story with Amy, confessing how much they were both shaken. She told Amy that Aidan's uncle had worried, "I'm trying to kill my nephew." Amy tried to reassure them by saying, "...If you're not [managing a food allergy] every single day, you don't realize."

Understanding the need to provide accurate and detailed information to relatives, babysitters and friends who care for Aidan, Amy created what she calls "The Aidan Manual." It came about because Amy's mother requested it the first time she kept her grandson. The Aidan Manual includes a consent form for medical and surgical procedures, an emergency treatment plan for allergic reactions, Aidan's medical information, a list of his doctors with their contact information, an up-to-date list of his medications, the phone number for Poison Control and his parents' contact information. The manual also contains directions to the hospital, acute care facilities and doctors' offices as well as to nearby shopping malls and grocery stores. In addition, it has family rules, Aidan's schedule and food allergy literature, which is also posted on the refrigerator. Amy readily admits that providing a copy of The Aidan Manual to his caregivers for their reference "makes me feel better." The manual helps his babysitter who is certified in CPR, knowledgeable about Aidan's allergies and knows how to administer his epinephrine auto-injector.

Amy is organized at Aidan's daycare as well. She keeps extra epinephrine auto-injectors at the facility along with a copy of Aidan's food allergy action plan. The staff has food allergy training, and everyone is made aware of his allergies including the other children. "I think the children like to be involved," says Amy. Because Aidan is at a developmental stage where he wants to touch others' food, he sits in a special chair at daycare where the staff can watch him carefully. Amy continues, "They've also posted [food allergy notices] everywhere, and the parents are informed to please not bring anything with those [food allergens]."

Eating precautions extend to restaurants as well. When Aidan and his parents dine out, Amy brings food that Aidan can eat in case they cannot order a meal safe for him to eat. She is also concerned about the cross-contact risks that arise when food is served buffet style. Serving utensils can be accidentally switched from one dish to the other, spreading food allergens in this way. Amy's practice of bringing safe foods for Aidan minimizes these risks.

At this age, Aidan's parents are teaching him to always eat and drink from his own plate and cup. Amy reminds family and friends not to permit Aidan to share their cups, plates or utensils in case he accidentally ingests the food proteins that are dangerous to him. She hopes that when Aidan is older, "he'll be able to police himself, and hopefully he might even grow out of [his food allergies]." "Until then," she adds, "...we're going to keep him safe."

Amy emphasizes that the one negative thing she experiences managing Aidan's food allergies is all the time it takes "because [America has] all these conveniences as far as foods...I pretty much have to make it from scratch...It's healthier for him. It's healthier for us. But [food preparation] does take more time..." Despite this one negative, Amy has become more educated about food allergies and more sympathetic to other parents dealing with similar issues. She says her son's food allergies have made her and her husband better parents because they have to be "extremely careful and fastidious about his care."

Amy's advice to parents of children newly diagnosed with food allergies is "Education! Get all the information. Have a plan...just like when you baby proof [your home]. When you baby proof, you move things around, you shift things around so that they don't get into things that are unsafe. It's the same thing." She adds, ". . .There are resources out there for you to make it a little bit easier, and once you get your routine established, it's fine."

Amy concludes that it helps to have a sense of humor about managing food allergies. She recalls a time when her sister-in-law was visiting and requested a copy of Aidan's "hundred-page manual." "It's not a hundred pages!" Amy laughingly insists.

POSSIBLE NEXT STEPS:

1. Do you have your child's emergency medical information including physicians' contact information in a central location along with general information about food allergies?
   
2. Do you maintain a current list of your child's medications including dosing instructions?
   
3. Have you provided your child's caregiver with directions to your child's doctor's office, pharmacy and hospital?
   
4. Have you posted a current food allergy action plan at home?
   
5. Are you teaching your young child to avoid unsafe foods in age-appropriate ways such as eating from his own plate?
   

6

BRYNN

What?! No peanuts on this flight?!

Despite having to be careful about the foods she eats, Brynn is a typical three-year-old in many ways. She loves to swim and dance and play princess! She does not like spiders or thunder. Her favorite foods are strawberries and toast. Her mother describes her as a "Daddy's girl" who is happy, smart, talkative and friendly. When she grows up, Brynn says emphatically that she wants to be "a grown up!"

F
ollowing the announcement that the flight would be peanut free in consideration of a peanut-allergic passenger, Brynn's mother Stacie was dismayed to hear the man next to her complain loudly, "Oh, I can't believe that. I want my peanuts!" Stacie turned to him and pointed to her daughter Brynn, "Well, here's your peanut allergic passenger!" Her fellow passenger had the good grace to sheepishly reply, "Oh, just kidding." However, the complaints continued. As the flight attendant came down the aisle, Stacie heard numerous passengers ask for their package of peanuts despite the announcement.

On another trip with Brynn, Stacie intentionally chose an early flight to reduce the likelihood of peanuts being served on the plane. She was horrified to discover
peanuts everywhere, including in the snack boxes. At the time, Brynn was about 15 months old and curious about exploring her surroundings. Although many food-allergic passengers routinely fly safely, these experiences made Stacie decide against flying with Brynn until she was older and could better understand the necessity of avoiding the risks around her.

Now three years old, Brynn has become quite aware of her multiple allergies to peanuts, milk and eggs. Her parents explain her food allergies to her as having a "special belly" and remind her often to be very careful about what she eats. Brynn actively participates in keeping herself safe by asking her Mom and Dad if a food is safe for her to eat. She also wears a MedicAlert
^®
bracelet.

Brynn's food allergies first presented themselves when she was eight months old. After feeding Brynn some baby yogurt, Stacie recalls that Brynn "started getting a rash, not like big hives, but just like a red rash." The rash was located predominantly around her mouth. Stacie called the pediatrician and was told to give her daughter Benadryl
^®
and avoid feeding her yogurt. She complied and continued nursing Brynn.

To give herself a break from breastfeeding, Stacie later introduced a milk-based formula. After consuming a tiny amount, Brynn promptly developed hives around her mouth and on her forehead. She refused to take more than a sip of the formula, but Stacie assumed Brynn just didn't like its taste. Stacie admits she was not aware of food allergies and "was not really connecting the dots." A week later, she had resumed exclusive breastfeeding, but Brynn was still having issues with hives on her face. Stacie contacted the pediatrician again, and this time, Brynn was referred to an allergist.

At eight months, Brynn was diagnosed solely with a milk allergy. Stacie recalls that she felt upset and scared, "but it felt like, okay, milk I can handle. I was really glad it wasn't peanuts...because being a former teacher, I knew about the peanut allergy from having kids in my class." Later, Brynn underwent more extensive allergy testing which unfortunately revealed she was also allergic to eggs and peanuts. Stacie confides, "And so then I really got scared that this was going to be a lifetime issue for us. I was really concerned that I could keep her safe now, but [not] when she goes to school, becomes a teenager [and] goes to college...So that was my first fear, was how we're going to deal with it long term." Adding to that fear, Brynn was later diagnosed with asthma. The allergist warned Stacie that Brynn's asthma may worsen the severity of an allergic reaction.

Stacie worries about making Brynn too stressed about her allergies. Stacie wants her daughter to be cautious but not scared. She says, "It's a fine line, and it's a lot of work." Fortunately, due to the diligence of her parents, teachers, family and friends, Brynn has only had minor contact reactions thus far. For example, she developed a welt on her cheek when Stacie kissed her after eating cereal with milk. As a result, Brynn's family has switched to soy milk in their home.

Brynn's preschool is peanut free. At the first parents' meeting, Brynn's teacher asked Stacie to explain her daughter's food allergies to the other parents. Stacie recalls, "...All of a sudden, they got scared, like 'Whoa, this is serious.'" Nevertheless, Brynn's transition to preschool has been "very smooth, and people have been very sympathetic and compassionate." She sits at the same table as the other children during snack time. Stacie provides Brynn with a cupcake safe for her to eat during birthday celebrations, which are few because Brynn's class is small.

Stacie's concern with the preschool is that "they do so much with food." She explains, "When I was first registering, I thought all the snacks did go through the office, which was a definite perk for me." Stacie later discovered that parents were bringing in snacks like cookies and cupcakes at least once a month for different classroom activities. Stacie now reviews the snacks daily and determines which are safe for Brynn.