A Little Bit Can Hurt (8 page)

It's a stressful job because Brynn is allergic to milk, a common ingredient in the many outside and homemade foods brought in by other parents. Occasionally, some of these parents have asked Stacie how they can make a treat that is safe for Brynn. However, the possibility that a cupcake or cookie made without milk, egg and peanut may have come into contact with these common food proteins via a mixing spoon or baking pan in someone else's kitchen makes Stacie "a nervous wreck." This cross-contact risk is the reason she is reluctant to permit Brynn to eat foods baked by another parent.

Despite being proactive about Brynn's safety, stress over her food allergies is still something her parents must manage, even at home. Stacie shares that her husband is sometimes more worried about Brynn's allergies than she is. "It's stressful. He's always asking if I have the EpiPen
^®
, and I ask him too. It causes that extra stress...We deal with it and move on...but it's a different element to our marriage that a lot of people don't have to deal with."

Food allergies are not new to Brynn's father. His brother has food allergies, and his 70-year-old uncle is allergic to nuts. Stacie explains that his uncle was "the one kid growing up with all these food allergies, and it was very, very rare in his generation."

Brynn's little brother Evan, now 15 months old, was allergy tested at six months. Although he tested negative for food allergies at that time, his parents had a scare when he was eight months old. At a Christmas party, Stacie gave him a pretzel that she didn't know was coated with peanut butter on the bottom. She ate one herself and was alarmed to taste peanut butter. Stacie recalls, although she and her husband knew Evan was not peanut allergic, "we were still in a panic for a while...We were just really glad [Brynn] didn't have it because it is the kind of thing she'd eat."

Stacie explains how her feelings have changed since Brynn's diagnosis. "I was very upset. At the first allergy meeting, I cried...I mean, now food is the enemy. I love food, and I loved peanut butter growing up...I thought, 'How am I going to do this?' But I'm not as overwhelmed [now]. I was sad about some things. But we really feel like we've got a good grip on the food allergies." Despite the stress of Brynn's allergies, Stacie says, "...I think it brings [my husband and I] closer...You have to cooperate. You have to work together. It's just a team effort."

Stacie advises other parents contending with their child's new food allergy diagnosis "that it's natural to go through that crazy, upset feeling...You have to read. You have to talk to people and get support...You're not alone."

POSSIBLE NEXT STEPS:

1. If you plan to request that peanuts are not served on your flight, have you informed the airline at the time of
   both
   booking and boarding that you or your child has a life-threatening peanut allergy?
   
2. Have you surveyed your seating area for loose peanuts and wiped down your child's tray?
   
3. Have you educated your child's preschool director, teacher and other parents about his/her food allergy?
   
4. Do you understand how and what snacks are served in your child's preschool?
   
5. Have you adopted a team approach to managing your child's food allergy with your spouse and other family members?
   

7

GRACE

Blessed with Savvy Siblings

The youngest of three, Grace is a "girlie girl" who insists on wearing her princess outfit or tutu to preschool every day. Not surprisingly, she can be dramatic. She adores Snow White. Her "besties" are Molly, Corinne and Samantha. Grace is an affectionate Mama's girl. She's also a picky eater who favors fruit, chicken nuggets and pasta with non-dairy margarine.

W
hen three-year-old Grace was first diagnosed with dairy and peanut allergies at eight months, her mother Holly feared the possibility that Grace would suffer social consequences because of her food allergies. Unfortunately, Holly's fear was recently realized at Grace's preschool.

Grace is enrolled in Mother's Day Out, a program which provides mothers of participating students a few hours in the afternoon to enjoy other activities while their preschoolers eat lunch and have extended playtime. The preschool is not peanut free, but its director asks parents to refrain from sending peanut products during Mother's Day Out. There are a few children, however, who regularly bring peanut butter sandwiches. As a result, the teacher seats the three food-allergic students, including Grace, at a separate table for their safety.

One day, Grace was sitting at a table with her friends, and another child pulled out a peanut butter sandwich from his lunch bag. On this occasion, the other food-allergic children were absent. The teacher immediately removed Grace from that table and sat her at another alone. Holly returned early and saw the event unfold. She shares, "It just broke my heart because I don't think the parents of these children who will 'only eat peanut butter for lunch' realize that not only are they jeopardizing the physical health of our kids, but their psychological health too."

At the time, Holly didn't say anything about Grace being moved away from her friends to sit alone. She confides she wanted to ask that the child with the peanut butter sandwich be moved instead but worried such a request would provoke controversy and anger among other parents. The situation proved to be a dilemma for Holly, who wants to protect Grace without offending others, and almost made her pull Grace from the Mother's Day Out program.

Regarding parents who don't respect the preschool's request not to send peanut products, Holly wonders in frustration, "I question how many of them would be willing to forgo these programs, which their children love, if they had a child with a food allergy." She says in the end, however, "I wound up calling the director and we had a really good conversation about it...I did learn that talking about it calmly is certainly helpful."

Grace is adored by her older siblings, Tess, age seven, and George, age eight. They know a lot about Grace's dairy and peanut allergies and how to protect her, but it has been a learning process. Tess explains, "I forgot to bring my snack to dance, and my friend gave me a snack. It was peanut butter crackers. I was supposed to throw it away before I went home, but I forgot to..." Then Grace got into her big sister's dance bag and handled the peanut butter crackers. She broke out in hives from the contact alone. Because she had no other symptoms and had not ingested the peanuts, her mother gave her Benadryl
^®
and her hives receded.

Since that episode, Tess and George have been very careful when they eat food to which Grace is allergic. To discourage their sister's interest in the food she cannot have, George states, "...We just say it isn't good, that it doesn't taste good..." Tess adds, "...When we have dinner that she can't have, like when we have pizza...we usually make her chicken nuggets," which happens to be Grace's favorite food.

Tess and George take additional precautions. If they eat peanut butter or drink milk, they do so outside the house and make sure they wash their face and hands when they return. Recently, Holly switched Tess and George from peanut butter to soy butter for Grace's protection. However, Holly doesn't let Grace eat the soy butter for fear she'll confuse it with peanut butter and be tempted to try peanut butter elsewhere. Also for her safety, when Grace and her family dine out, they refrain from eating at Chinese and other restaurants that regularly prepare dishes containing peanuts.

A sympathetic big brother, George says the worst thing about Grace having food allergies is that "she didn't have any ice cream once and we did...so she started to cry." As a result, they now purchase soy ice cream for Grace to enjoy. The best thing about Grace's food allergies, George adds optimistically, is "she's allergic to milk that she hates!" Her aversion to milk stems from the fact that, as she says, it makes her mouth feel "sick" and her stomach upset.

When Tess asks Grace what she would do if she saw a peanut on the floor, Grace hesitates. Her big sister teases, "Would you run away? Would you scream?" Grace laughs at her sister's teasing but doesn't answer. However, when Holly asks Grace what she would say if someone tried to offer her an unfamiliar food, Grace replies, "No, thank you." Even at the tender age of three, Grace understands and clearly articulates that she is allergic to "peanuts and milk."

Grace's food allergies manifested when she was just a baby. She was a fussy baby, and when Holly supplemented Grace's diet with a dairy-based formula, she developed a rash around her mouth. Then, when she was eight months old, Grace and her family were relaxing and playing at the pool. Holly was eating trail mix containing peanuts while watching her children swim. She then picked up Grace who suddenly "broke out in finger marks all over her body." She had reacted similarly once before, though not as extensively. Holly knew a little about food allergies because she has a nephew with a peanut allergy. That day, she became
suspicious about Grace's symptoms and contacted the pediatrician who ordered blood work to test for food allergies.

The results of Grace's blood tests indicated she was sensitive to corn, wheat, peanut and milk. She was referred to an allergist but had to wait six weeks for a new patient appointment. In the meantime, Holly was still breastfeeding and had to remove corn, wheat, peanut, milk and all foods containing them from her own diet. As a result, she lost weight at an alarming rate. Grace was eventually seen by an allergist, and with additional testing and a detailed consultation regarding her food history, the allergist determined Grace's food allergies were limited to peanut and milk only.

At that time, Holly knew from her nephew's peanut allergy that Grace's food allergy diagnosis would be "life changing." She well remembered her own lack of understanding about food allergies and how to choose safe foods for her nephew before Grace was diagnosed. She elaborates, "I remember one year I brought gummy bears [for my nephew], and I remember looking and reading the label, trying to be good." Holly's sister-in-law determined the candy wasn't safe for her son after checking the ingredient label and reading that the candy had been manufactured in a facility that processes peanuts. Holly says, "I felt awful. I tried! I read the label!" Her sister-in-law told her that she did not expect Holly to read the label. After Grace was diagnosed with dairy and peanut allergies, Holly quickly learned to be vigilant like her sister-in-law about scrutinizing ingredient labels for her child's safety.

Regarding her older children's treatment of Grace, Holly says, "...They're very compassionate to her." She feels that Grace's food allergies have taught George and Tess to appreciate each other's differences, broadening their perspective and making them less self-absorbed. As the oldest, George is particularly protective and sympathetic. Holly says that he "does get upset when [Grace] can't have something. So it's good...for them to see [her differences]."

With two years of managing Grace's food allergies under her belt, Holly encourages parents who are contending with their child's new food allergy diagnosis to "join FAAN and all the support groups. Definitely talking to other people helps me." As concerned siblings, George and Tess offer their own advice. George counsels, "Don't share food with someone when you don't know if they're
allergic to something." Tess advises, "...If they're allergic to peanuts, never eat [them] because it could kill them. They might not have an EpiPen
^®
with them."

Holly appeals to people who are not living with food allergies to "...be up front about anything [you] don't understand." She is eager to educate others but fearful of offending. She elaborates, "I'm happy to go on and on...It's just when I feel like I'm forcing myself on them that I try to tread lightly." Holly hopes that others recognize food allergies are serious and behave sympathetically. She concludes, "If we could learn to live in the world with people with differences, it just would be...a lesson for everyone."

POSSIBLE NEXT STEPS

1. Are you teaching your young child with food allergies how to articulate his/her food allergies?
   
2. Have you educated both your food-allergic and non-food-allergic children by sharing age-appropriate books and DVDs about food allergy basics?
   
3. Do you emphasize the importance of face and hand washing to remove food proteins to which a family member is severely allergic?
   
4. Have you considered stocking food alternatives (e.g., soy or sunflower seed butter versus peanut butter) in your home for the safety of a food-allergic family member?
   
5. Do you read the entire ingredient label including notes about manufacturing procedures? Are you encouraging your children to read ingredient labels and instructing them how to determine if a food is safe? Go to
   www.foodallergy.org
   and search "How to read a label."