A Little Bit Can Hurt (3 page)

The desire to continue to raise food allergy awareness and understanding through the sharing of stories, ideas and personal experiences is what ultimately led me to write this book following a series of events one February.

It was Valentine's week, and I was sitting at my desk at work. I heard one of my technologists complaining about her son's school. She was outraged because the children couldn't bring in candy for Valentine's Day because of "those food allergy kids." I was shocked and saddened and felt as though I had just been kicked in the stomach. It was and is my custom to speak very freely about food allergies to most of the people with whom I interact on a regular basis. Many of those same people have told me they enjoy a greater awareness of food allergies and have educated their families accordingly. When I overheard my coworker's rant, I thought, "How did I miss her? How does she not understand the daily stress and fear that many parents of food-allergic children face?"

I knew that my coworker was a loving parent. I knew that she was compassionate and professional in the care of her patients. I also knew that at one time this coworker had suffered a severe and dangerous allergic reaction to an antibiotic she was taking. In light of her caring nature and previous health experience, I found it ironic and confusing that she was unable to be compassionate toward her child's food-allergic classmates. I wondered what was behind her anger. I hoped to provide her insight into what it's like for a young child to manage his or her own food allergies in school. I also wanted to share with her some of my fears and concerns as the mother of a food-allergic child.

During a brief but candid and friendly conversation, my coworker confessed that her anger stemmed from the fact that her son was not allowed to bring peanut butter to school when that was "all he ate." After hearing and acknowledging her frustration, I shared with her the nauseating terror that overwhelms me whenever I get a call from my son's school nurse. I explained that in this moment of heart-pounding panic, I am afraid the nurse has phoned to tell me my son died at school
after accidentally coming into contact with peanut butter. After we spoke, my coworker and I both came away with a better understanding of each other's perspective and experiences.

A few days following this conversation, I attended a women's inspirational retreat, the theme of which was finding and fulfilling your passion in life. As I considered my various passions and interests, several thoughts came to mind including my family, food allergies and photography. I believed that God had blessed me with two wonderful sons, both of whom have life-threatening food allergies, for a reason. I specifically wondered how I might honor the gift of my food-allergic sons.

While reflecting on that weekend, the discussion with my coworker and numerous past experiences, I recognized with clarity my compelling desire to provide on a much larger scale insight into living with food allergies. In particular, I wanted to reveal the individual "faces of food allergy" so that people do not only see "those food allergy kids" but instead clearly see their neighbor, student, child's playmate, relative, coworker or patient. I wanted to detail not only the differences between food-allergic individuals and those without food allergies but also their many similarities such as love of family and friends, sports, music and theater.

In order to tell the stories and reveal the faces of people living with food allergies, I set out to interview food-allergic individuals of various ethnicities and their families in addition to the community professionals who care for them. I wanted to unfold their real-life experiences. Many families embraced me and spoke very openly about their negative and positive experiences with food allergies. I also interviewed professionals such as dieticians, educators and physicians who generously shared the wisdom they had acquired caring for food-allergic individuals.

As I spoke with these people, I was amazed by the wealth of information they shared and was humbled to see a portrait of the food allergy community emerge that was both varied and beautiful. The narratives my interview subjects shared were not only relevant and enlightening to others living with food allergies but also to the wider Food Allergy Circle, a term I coined to define caregivers, educators and healthcare and food industry professionals caring for a specific food-allergic individual.

My interview subjects, both personal and professional, further fanned my passion to promote food allergy awareness and education. In 2010, I established my advocacy voice on social media and my web site,
www.foodallergymomdoc.com
. Please join me there!

HOW TO READ THIS BOOK

I have taken into consideration the fact that we all lead busy lives by choosing for this book an easy-to-read format including both photo essays (Part I) and professional interviews (Part II).

In Part I:
Food-allergic Individuals and Their Families,
you will find a collection of photo essays grouped by developmental stages from prenatal-infant to adults. These essays encompass food-allergic individuals of all ages, not just children, so that readers reap full benefit from a wide array of life experiences and perspectives. Each chapter concludes with several "possible next steps" for the reader to contemplate based on lessons gleaned from each subject's essay.

In Part II:
Community Perspectives,
you will gain professional wisdom from candid interviews with one of the food allergy community's leading allergists as well with prominent leaders of a food allergy advocacy organization and the food service industry. In addition, you will hear from a preschool director, a teacher and a dietician, all of whom regularly care for food-allergic individuals.

The aim of this book,
A Little Bit
Can
Hurt,
is to learn from others' experiences, both good and bad, and thereby to gain additional food allergy management tools for daily use in real-life settings including school, travel and dining out. In order to ensure the validity of medical content, this book has been reviewed by two board certified allergists. You will find this collection of personal narratives and professional interviews interesting, encouraging and educational, and I hope this book will provide a springboard for discussion among members of your or your child's own Food Allergy Circle. Ultimately, you will learn from these faces and voices of food allergy the truth about food allergies, why we should care and what we can do to create a safer environment for those with food allergies.

Section 1

PRENATAL - INFANTS

"Making the decision to have a child - it's momentous. It is to decide forever to have your heart go walking around outside your body."

~Elizabeth Stone

P
regnancy can be an exciting time of anticipating the birth of a new baby, but it can also be stressful. In conjunction with physical and hormonal changes, preparations for baby and decisions about prenatal testing and the birthing plan sometimes overwhelm and cause anxiety. Parents of food-allergic children may be fearful about having another child with food allergies, and conflicting recommendations regarding diet during pregnancy and lactation add to the stress and confusion. Deciding to stay at home or return to work weighs heavily on the minds of some parents because of their child's food allergies. Choosing to breastfeed or formula feed may also cause anxiety in allergic families. Food allergens pass through breast milk and may adversely affect the infant while dairy and soy formulas may also trigger allergic symptoms. In addition, parents of food-allergic children may be filled with trepidation at the thought of introducing solid food into an infant's diet.

Section One delves intimately into the dramatic story of one infant as recounted by her mother and the compelling narrative of an expectant mother who has a toddler with multiple food allergies. You will meet:

• Sweet baby Nikita, a first-generation American afflicted by severe eczema and numerous food allergies; and
  
• Susan, an expectant mother struggling with guilt that she may have provoked her son's multiple food allergies.
  

1

NIKITA

Got eczema? Think food allergies!

Nikita is a morning person. By 5 a.m., she is up and ready to play. Her mother Ranjna describes her toddler as bubbly, playful, calm and even-tempered, "apart from being a devil in the morning!" Nikita loves playing peek-a-boo with big brother Rahul, and though he is almost ten years older, she often wins wrestling matches against him. She is attached to her beloved Nanu, her grandfather who lives in India and calls every morning to sing to Nikita, his "Mika." Her favorite foods are applesauce, pears and mangoes. Nikita is afflicted by numerous food allergies but, in her mother's proud words, remains a "gutsy trooper."

N
ikita is a first-generation American and the first in her family to be born in the United States. She is allergic to milk, eggs, soy and multiple grains. Her diet is limited by her extensive food allergies, and as a result, her current weight falls in only the fifth percentile. At birth, she was healthy, alert and weighed 7 pounds, 8 ounces which placed her in the 90th percentile for weight. Ranjna recalls, "The first thing I thought when I saw her was 'What a healthy baby!' She
also had gorgeous black hair, and she was so soft and clean." Mere months later, however, Nikita's beautiful baby skin had deteriorated alarmingly. What went wrong?

At the hospital, Ranjna began breastfeeding but was encouraged by hospital staff to permit them to formula feed Nikita in the nursery at night. After being discharged, Ranjna continued nursing Nikita at home, and her weight remained in the 90th percentile.

When Nikita was one month old, Ranjna noticed intermittent red spots on Nikita's forehead, a mild indication of severe skin problems to come. When Nikita was three months old, Ranjna had surgery requiring general anesthesia. Following her surgery, she formula fed Nikita so her daughter would not be exposed to anesthesia lingering in Ranjna's breast milk.

After her recovery, Ranjna had to travel away from Nikita and opted to continue formula feeding. At this time, Nikita's diet was comprised predominantly of a dairy-based formula and supplemented only occasionally by her mother's breast milk. Nikita soon developed eczema on her legs, and within weeks, her eczema had spread extensively. She had scratch marks on her legs, and the skin on her upper arms was "raw," by Ranjna's description. The affected areas cracked and oozed. When Nikita rubbed these areas, they bled.

Nikita's pediatrician suspected she had a milk allergy and, unaware that Nikita was also allergic to soy, instructed Ranjna to switch to a soy formula. Nikita's eczema worsened. The pediatrician then suggested Nikita's problems might be a result of Ranjna's breast milk and instructed her to stop breastfeeding completely.

Ranjna recalls that at this point, Nikita's skin was "gruesome" and painful. Consequently, the cherished ritual of bathing became a dreaded event involving the entire family. Ranjna poignantly describes the trauma. "...My mother used to hold her, and everybody would come. My father used to put the water on her, and I used to kind of rub the soap on her...Do you know how it feels to bathe scraped skin? It burns. I can tell you my husband used to cry buckets. We were all so traumatized. We had to bathe her because we had to get the bacteria off her skin...What this girl has suffered, it is absurd...It was very difficult to see her suffer like that."

Increasingly anxious about her daughter's health, Ranjna turned for support and information to an online forum for parents of children with various allergies. The support offered by empathetic parents was a welcome boon to Ranjna, and she implemented many of their suggestions in the hope of healing her daughter. She discontinued using household cleaning chemicals and instead used natural alternatives such as baking soda, vinegar and lemon juice. She threw out all soft furnishings, leaving her home quite bare, in an effort to eradicate any cause of allergy. She also restricted Nikita's access to toys for fear that the chemicals in the plastic toys might exacerbate her condition.