A Little Bit Can Hurt (2 page)

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FOREWORD

A
s an allergist who treats a lot of individuals with food allergies, and as the parent of a now twenty-year-old with peanut and fish allergies, I have experienced the food allergy world from both sides of the exam table. I was a post doctoral fellow in Allergy and Clinical Immunology in 1995 at Johns Hopkins when my then two-year-old son had his first systemic reaction to peanut butter. I had been treating patients with life-threatening allergies for a brief time, but I was now the frightened parent having to cope with a lifetime of food avoidance and risk of systemic reactions. I remember the fear and uncertainty that night as my wife and I went to the ER after giving my son epinephrine. Could he safely go to preschool, elementary school, overnight camp, college? (The answer to all these questions I now know is "yes.") At that time, the Food Allergy and Anaphylaxis Network was still a young organization, and the seriousness of food allergies was still foreign to many.

In this book, Dr. DeCosta has assembled a series of life stories about food allergies and their impact on individuals and families. It is a form of support group by proxy. These stories show you that you are not alone. Other individuals share your concerns, your anxieties. Others have gone through what you may be feeling and have come to certain solutions. While not all stories should be construed as the right way or even the medically correct way with dealing with a situation, each one demonstrates how food allergies have affected families and usually how they have triumphed over adversity. They focus on the positive as well as the more difficult aspects.

I was proud when my son told me at age 14 that he was glad he had food allergies because it gave him empathy for those with problems. I always encourage those with local food allergy organizations to get involved or start one. Everyone should join FARE and attend a FARE conference at least once. And while food allergy awareness is now much more prevalent than it was in the mid 90's, it is individual stories such as these that continue to spread the word. We are each
ambassadors for the food allergy mission. The more educated, proactive, cooperative and pleasant we are, the more we advance the food allergy mission for others in the future.

The second section of this book does an excellent job of educating about food allergies. There are interviews with experts in food allergy research, childcare providers, even restaurant safety. This section is very readable, accurate and informative. I learned quite a bit even though I consider myself knowledgeable about this field. Knowledge is essential so that we are aware of the risks of certain foods and situations and can act accordingly. We all know for instance that getting in a car is a potentially life-threatening risk, but we wear seat belts, drive safely and have airbags to minimize that risk. Likewise, there are ways to minimize (but not totally eliminate) the risk from food allergies and still move ahead with a relatively normal life.

As an allergist and advisor of a local food allergy support group, I have shared my personal experience as a parent of a food-allergic child with other parents. My task has always been to try to balance safety with normalcy. Certainly some allergens are harder to avoid than others (milk and egg, for instance), but I firmly believe that with careful planning, reasonable accommodations, education and cooperation, food-allergic individuals can have a very fulfilling, relatively normal and
safe
life. The horror stories about food allergy fatalities are frightening, yes, but these are indeed the exception and the vast majority of food-allergic individuals never have fatal or near fatal reactions. In fact, most EpiPens
^®
expire before they are used. This is not to encourage complacency in any way. All food-allergic individuals with life-threatening food allergies need to have injectable epinephrine with them at all times, ready to use in case of a systemic reaction. Asthmatic patients with food allergies are particularly at risk for severe reactions. When a reaction happens (even with the best preparation), rapid use of epinephrine is the most important thing to prevent severe outcomes. Most parents and caregivers feel good about having treated an allergic reaction appropriately. It is a real life fire drill and demystifies the fear in some ways. Nevertheless, most food-allergic individuals can safely go to school, eat in the cafeteria, attend camps, participate in sports, go to college, ride airplanes and do
almost everything any other person can do. It requires planning, yes, but it is very doable. Hopefully, this book gives you that message.

The future is bright for those with food allergies. Research is very active and exciting. Actual treatment, such as careful oral desensitization, is showing great results. At present I believe that this should only be performed in research settings, to finalize protocols and determine risk. But the field ten years from now may look very different than the current standard of careful avoidance and treating accidental ingestions when they occur.

I commend Dr. DeCosta for her informative, readable, enlightening and enjoyable book. She is one of many in the food allergy community who really makes a diference.

Michael Goldman, MD

Fellow, American Academy of Allergy, Asthma and Immunology

Diplomate, American Board of Allergy and Immunology

Part-time Instructor, Johns Hopkins University School of Medicine

Clinical Assistant Professor, University of Maryland Medical System

EDITOR'S NOTE

J
ust over a decade ago, my second child Eleanor was diagnosed with food allergies. At the time, she was just 10 months old, a vibrant and precocious toddler who had one month prior abruptly refused to eat her baby food in favor of the table food she saw her big sister eating. Floundering for food options, I unwittingly offered eggs and observed that the skin on Eleanor's chest became flushed and blotchy after she ate them. "Stop feeding her eggs and get a bottle of Benadryl
^®
," advised Eleanor's pediatrician. I did. I also introduced her to peanut butter. Within moments of finishing her second peanut butter and jelly sandwich, Eleanor broke out in angry hives and began coughing repetitively. Alarmed, I gave her Benadryl
^®
, and her reaction fortunately subsided. I phoned Eleanor's pediatrician and was immediately referred to a pediatric allergist.

Within days, Eleanor was formally diagnosed with severe allergies to eggs and peanuts. My memory of Eleanor's first allergy appointment is marked by two stark words, "life threatening." They impacted me with a tsunami of grief, guilt and bewilderment, disordering my family's carefree life while I fumbled to get up to speed on this condition that threatened my child's life. Enter the author, Donna DeCosta. Donna was a friendly acquaintance I had met through a mutual friend. This friend had shared with Donna the news of Eleanor's food allergies. Not even a week after Eleanor was diagnosed, Donna phoned me. She asked me first if Eleanor had an EpiPen
^®
prescription. "Good," she replied with relief at my affirmative answer. With warmth, empathy and patience, she then proceeded to school me on how to manage my daughter's severe food allergies. We talked about how to read an ingredient label and assess a food manufacturing line while standing in the grocery store with two young children in tow. Mind you, this was before the FDA required that the top eight food allergens be identified in plain English on ingredient labels under the Food Allergen Labeling and Consumer Protection Act (FALCPA). We talked about cross-contact risks at an ice cream parlor. She counseled me to accept, right or wrong, that the responsibility for managing my child's food allergies would likely rest more heavily
on my shoulders than on my husband's. That single phone conversation equipped me with the preliminary tools I needed to keep my child safe.

I have had the privilege of working on
A Little Bit
Can
Hurt
in an editorial capacity with Donna these many years she has labored in her spare time as a busy radiologist and Mom to bring this book to fruition. It is my effort to "pay it forward" to you, the reader. If you too have been overwhelmed by the words "life threatening," then please bear in mind one single word to balance the fear, "manageable." With warmth, empathy and patience, the parents and professionals here offer you the tools you are seeking to manage your or your child's severe food allergy.

My Eleanor turns eleven next month. She outgrew her egg allergy long ago but remains severely allergic to peanuts. She heads to sleepaway camp for the first time this upcoming summer and to middle school in the fall. She remains vibrant and precocious. Thank you, Donna, for helping me to keep her safe.

Warm regards,

Meg Carey

INTRODUCTION

What can I feed my child? How do I keep him safe? If I fail, will he die?

These frantic questions flooded my mind when my oldest son Frank, then a toddler, was first diagnosed with severe and life-threatening allergies to peanuts and tree nuts. Although he was diagnosed more than thirteen years ago, I well recall the potent mix of fear, anger and helplessness that I experienced. Questions and concerns overwhelmed me. What should I do next? Where can I go for help? Will my son be safe at daycare? Can I return to work? Will he outgrow his food allergies? Why him? Why
me?
Am I to blame? Are we alone?

Though I certainly felt alone at the time of Frank's diagnosis, the shocking reality was that we were far from alone in dealing with the life-threatening condition of food allergy.

When my son was diagnosed in 2000, according to data compiled by the Food Allergy and Anaphylaxis Network (FAAN), there were more than 12 million Americans with food allergies including 2.2 million school-age children.
¹
One in 17 of those food-allergic children was under the age of three.
²
Food allergies caused over 30,000 emergency room visits
³
and 100 deaths
⁴
annually in the United States alone. The National Institutes of Health reported that food allergy had become an important public health problem with psychological, nutritional, developmental and lifestyle impact on children.
⁵
At that time, there was no cure for food allergy.

Current studies have found the severity and prevalence of food allergies in childhood to be higher than previously reported. It is now estimated that there are as many as 15 million food-allergic Americans of which six million are children.
⁶
Food allergies now cause approximately 200,000 emergency room visits per year.
⁷

While theories explaining the increasing prevalence of food allergy remain unproven, there is no denying the fact that food allergies are a significant health concern affecting the entire family unit. Despite promising research, there is still
no cure for food allergies. Complete avoidance of the offending food or foods by the allergic individual is therefore essential to safely manage the health risks associated with food allergy. Yet the daily act of avoiding the offending food can be painstaking, stressful and fraught with pitfalls. Education and support are crucial to the safety and well-being of food-allergic children and adults.

Initially lacking practical support and experience with food allergies, I remember worrying how my family would function to keep my young son safe. Frank's allergist suggested joining the Food Allergy and Anaphylaxis Network (FAAN), an organization whose stated mission was "to raise public awareness, to provide advocacy and education, and to advance research on behalf of all those affected by food allergies and anaphylaxis."

I joined FAAN and began reading books, articles and pamphlets about food allergies. Although I am a physician, I did not have extensive training in food allergies and found educational materials about food allergy basics and daily management to be very helpful. In addition, I was excited to discover wonderful children's books and videos about food allergies which helped me to educate my son about his food allergies.

The spring following my son's diagnosis, I attended one of FAAN's annual conferences during which I was relieved to meet many other parents dealing with similar concerns and issues. The conference speakers shared information on food allergy basics, research, management strategies and school tips as well as what to expect in the teenage years. Although I connected with many people and learned a lot about food allergies over the course of that conference, I needed ongoing support.

At the close of the conference, I asked one of the coordinators for the names of local support groups and was dismayed to learn there was no food allergy support group in my area. The FAAN coordinator suggested that I start one and gave me the name of an allergist who would be willing to act as the group's medical advisor. I politely replied, "No thank you." On the way home, however, I decided to explore in greater depth the idea of founding a support group. I gathered information from food allergy support group leaders across the country, researched other types of support groups and thought about what format might be most beneficial. I contacted the recommended allergist who was very eager to assist me.

A few months later, less than a year after my son's diagnosis, I founded Supporting Allergic Families through Education (SAFE) and began to acquire members. SAFE served as a local support and source of education and awareness for families living with food allergies. With the guidance of two medical advisors, our members collectively benefited from the wisdom of guest speakers as well as the sharing of ideas and experiences with one another.