Read an Excerpt

Caring for Your Child with Severe Food Allergies: Emotional Support and Practical Advice From a Parent Who's Been There

Lisa Cipriano Collins
ISBN: 0-471-31621-0

INTRODUCTION
IN THE UNITED STATES, an estimated 6 percent of children— 4 million children— are affected by true food allergies, according to the Food Allergy Network, with a higher prevalence in boys than girls. I emphasize true food allergies because reactions to food are not always due to an allergy. (More on this in chapter 1.) Allergic reactions to food range from hives to nausea and vomiting to anaphylactic shock. Anaphylaxis is the term used for the most serious of allergic reactions, which involves one or more body systems. The most serious symptom that may be experienced in anaphylaxis is a rapid and severe drop in blood pressure leading to unconsciousness. Left untreated or undertreated, anaphylaxis can result in death.
When your child runs the risk of dying if he or she eats the wrong food— or is even exposed to it— a normal childhood seems out of the question. Yet balancing safety with normalcy is paramount.
Managing the care of a child at risk for experiencing a food-induced anaphylactic reaction is a family affair. As you know or will discover, parents, siblings, and even caregivers of food-allergic children often carry an emotional burden. Stress can affect family dynamics and threaten the emotional and physical health of everyone, including the food-allergic child.
This book is based on my studies of family systems, as well as our family's experiences and those of other families dealing with food allergies. It is written both for the immediate family of a child with severe food allergies and for extended family members and other caregivers who want to offer the family support. My goal in writing this guide is to help family members minimize the risk to the food-allergic child of experiencing a food-induced anaphylactic reaction, have healthier emotional lives, and be better able to communicate the food-allergic child's needs to others who care for the child in the parents' absence. This guide is also intended to help caregivers become confident about their ability to provide safe care for the food-allergic child and to be better able to communicate with the child's family. They, too, will be able to promote a healthier emotional life for the food-allergic child.

Some of the issues addressed in this book may be of great concern to you at this particular time, while others may not. Some issues may be ongoing. Families say the process of managing a child at risk for anaphylaxis does not present itself as a straight line with a beginning and an end that simply needs to be worked through. Instead, the process seems to have no end. Frequently, issues are revisited as the food-allergic child's environment or stage of development changes. With this in mind, it is my intention through this work to provide a forum for you to visit and revisit the issues that are of particular concern to you and the family.
Please keep in mind that the information contained in this guide is not intended to be a substitute for consultation with the child's physician. All matters of health require medical supervision. Basic food allergy information is presented to empower you to better communicate the child's needs to others, as well as to help you make decisions about practical daily living. This is not a book on the medical management of food allergies.
My hope is that families and caregivers will learn ways to support one another and create an environment in which trust, faith, hope, normalcy, and self-esteem can grow and flourish. Most important, they will learn to increase the level of safety for children with severe food allergies— in and out of their presence.

Chapter 1
FIRST ENCOUNTERS WITH A SEVERE FOOD ALLERGY

IN THE PROCESS of researching this book, I had the privilege of hearing many families' personal food allergy stories. The most profound story almost always seemed to be the answer to that loaded question: "How did you find out about your child's allergy?" I noticed that whenever there were two or more sets of parents of food-allergic children in a room you could count the seconds until one would ask the other this same question. And it is also the question I am most often asked by members of the media and every other person who is aware of my son's allergy.
People's answers seemed to fall into two categories. One group of parents experienced a single event— such as an unexpected and obvious allergic reaction that landed their child in an emergency room— followed by a swift diagnosis. The other group of parents told me of a slower process: of an infant or toddler who experienced many health problems such as colic, gastrointestinal problems, or eczema-like symptoms for a long period of time. After countless doctor appointments or changes in diet and formulas, a diagnosis of true food allergies was finally made.
In either case, the realization that a serious health concern exists for their child is one of the worst things that can happen to parents. Many times parents don't allow themselves to process this trauma because uninformed doctors or family members tell them that all they have to do is avoid the food that their child is allergic to. Well, it sounds simple. Even you may rob yourself of owning what you feel by looking at your otherwise healthy child and telling yourself that it could be so much worse. After all, we are not talking about diabetes or, God forbid, leukemia or some other cancer.
As a parent, you tell yourself that you can handle this, but you soon find that you do not even know where to start. There is no magic formula for managing the safety of your child; after all, he or she must eat! But what is safe? Well-intentioned people may share every horror story they have ever heard of a child, teenager, or adult dying within minutes of eating the food to which they were allergic. My son is allergic to peanuts, and I have heard stories of peanuts being found in chili, in a plain cookie that was cross-contaminated in someone's kitchen, and on the label of all kinds of unlikely items, even plain M& M's.
Upon joining the Food Allergy Network, you will start receiving a helpful and indispensable bimonthly newsletter called Food Allergy News, as well as special mailings called Alerts, which are sent out each time there is a specific mislabeling or cross-contamination problem. For example, there could be peanuts in the cracker-and-cheese sandwich cookies you bought last week or in your child's favorite cereal. Worse yet, you wonder if the food you are feeding your child today will be the subject of tomorrow's emergency Alert. Then you start thinking about the birthday party your child is invited to and wondering about the safety of your child's environment at day care, school, your neighbor's, or Grandma's house. You realize that you will need to tell all these people about your child's food allergy. You realize that all of these people will need to know how to recognize a reaction and administer an auto-injector of epinephrine. You talk to a friend, sister, teacher, or mother and you quickly realize that many people are not aware of the seriousness of food allergies, and some may even sound as if they do not believe you. In the worst-case scenario, perhaps even your spouse does not share your level of concern.
Perhaps you would not categorize your reaction to your child's diagnosis as being this dramatic. Or perhaps this description does not even begin to address the grief and panic you have felt or are feeling now. Either way, it is my belief from my own experience and the observation of other parents' experiences that it is essential to allow yourself to recognize and feel the effects of the many ways that this diagnosis has affected your and your family's life.
For instance, suddenly there is another consideration to factor into almost every conceivable decision, such as whether my son should be allowed to go to certain birthday parties, play at a new friend's house, or ride to school on the chaotic bus that I imagine is filled to the brim with bullies toting killer peanut butter and jelly sandwiches. Having to do this kind of thinking for every seemingly normal activity can be hard to accept as well as exhausting. My desire to provide my son with a normal life made me want to go on with living and disregard this new consideration so as not to let the allergy "win." What I've found is that living can go on and my son can participate in almost every "normal" activity.
However, in our case, the decision-making process must be different. Simple decisions often become major issues. At first, it simply takes more time and effort to apply this new decision-making process, which can make life feel arduous. You must ask yourself, "Will my child be safe if he participates in this activity?" By the word activity I mean anything and everything, from continuing with day care to going out for an ice cream cone or going on an educational overnight with the school. Then you must go on to consider all the variables. Will your child be with someone who knows about the allergy and knows how to recognize and treat a reaction? Will there be food there? Will your child be close to an emergency room, should the need arise? Is your child old enough to handle the inherent risks involved? How much does your child really want to do this? How will your other children feel if you need to accompany your food-allergic child? Can you feel comfortable with the amount of risk involved?
Some of the questions you ask yourself may be hard to answer. It is up to you to consider all the variables and make a decision. Many times you will decide to allow the activity even though it will mean extra work on your part for you to feel confident about the safety of your child. This may mean going out of your way to become a part of the activity yourself, or taking the time to educate another adult who may or may not be willing to help. This sounds like a lot for most parents who may already have a lot going on with family and community life, as well as perhaps working outside the home.
Having to adopt a new way of making decisions can sometimes be overwhelming. Having to live with the honesty of the answers that you arrive at may also be difficult. What if, after honestly evaluating an opportunity, you find that you cannot allow your child to participate in something that you enjoyed as a child? For instance, perhaps you decide that the risk of cross-contamination at ice cream parlors is too high and you will no longer stop at your family's favorite ice cream shop on the way home from the beach. How will you experience that loss? How will you deal with the possible anger from your child? How will this decision affect your other children, and how will you deal with their feelings? Some parents tend to respond to their new reality by feeling that it is impossible to provide complete safety and simply decide to "take their chances" and go on with normal decision making and normal life. Others may decide that the only appropriate response is to drop everything else, accompany the child at every moment, and minimize any new experiences. Both strategies may provide the parent with some initial relief, but both are fraught with problems. Neither strategy is in the best interest of you or your child. Your child's life is at stake if you take unnecessary risks for the sake of normalcy or if you do not insist on his or her EpiPen being with him or her at all times. Your child's emotional health is in jeopardy if you shelter the child from every new experience or stunt his or her age-appropriate independence and growing self-esteem by your constant presence.
Making the commitment to adopt this new decision-making process is difficult whether your child has just been diagnosed or, if after years of struggling, you realize you need help in safely managing the care of your food-allergic child. I can say from experience that it is most difficult while the adjustment to this new decision-making process is being made. During this time you will be attempting to truly understand the medical realities involved with food allergies. You will need to take this medical knowledge and look at each little decision with a willingness to accept the conclusions you arrive at. It is not always easy, but as you begin to make good decisions, you will find over time that many situations come up again and again, and you will already have your answer.
Many things, like how to handle a baby-sitter or the baseball coach or lunch in the school cafeteria, will already be safely resolved. You will experience a sense of relief and confidence that comes from knowing you are doing everything you can to provide your child with a safe and normal life. Your child will begin to experience a new sense of safety and may respond with positive personality changes, becoming more outgoing or feeling less of a need to engage in troublesome behaviors such as acting out in order to feel attended to. New situations will continue to come up, and you will have to go right back to the beginning in dealing with them, as will happen each September when dealing with a new teacher or a new friend or activity. After eight years of dealing with food allergies our lives sometimes seem almost normal and care-free, but I can feel the difference in managing my two nonallergic daughters' lives. It does not strike fear in me when they receive a birthday invitation to go to an amusement park an hour away or to enjoy the spontaneity of grabbing a bite to eat at the mall while shopping. I am quick to say yes when an unexpected play date arises for them, or to enjoy the convenience of a carpool situation. We need to accept that serious food allergies make managing certain aspects of our children's lives more complicated, and we must be willing to deal with this.
Only then will you be able to see the allergy for what it is and not be paralyzed by your fears: that your child may die; that your child is different; that the carefree life you wanted for your child is now gone. After being honest with yourself and others, you will be able to really take in all the basic medical information you will need to become familiar with, and to take these facts into consideration when making decisions about your child and family. It is ironic that only after fully realizing how deep and far-reaching the implications of the food allergy are will you be able to actually minimize the effects that it does have on your family. This is the goal. The point is not to wallow in self-pity but to work through what you do feel in order to make the daily decisions that will ultimately make your child as physically and emotionally healthy as possible. You and your family in turn will reap the benefits of helping your child have the safest environment possible, the most normal childhood possible, and the least amount of anxiety necessary.
I would recommend beginning the process of educating yourself about your child's diagnosis by asking yourself the most revealing question of all, "How did I find out about my child's allergy?" I would like to answer this question myself to share with you my story. I have found listening to others' stories strangely healing and sometimes inspirational. You are not alone.

MY STORY

My son, Max, is our firstborn and simply was a delightful baby in almost every way. I am reluctant to say he was a good baby because that would imply that a baby with a lower tolerance level would have to be called a bad baby. I will say that his needs were so limited and so easily met that he was extremely easy to care for, and this made for a very happy household. A day care provider who watched him for short periods of time used to comment that it did not seem right to accept money from me to care for this happy infant. In my naïveté I was tempted to attribute his fabulous disposition to my keen and effortless skill and instinct as a mother. (I have since given birth to two daughters who have wasted no time in letting me know that skill or instinct had absolutely nothing to do with my son's behavior and disposition. If anything, the girls have led me to believe that I must surely be lacking some essential skill or instinct! But that is the topic of yet another book entirely.)
Max never had any trouble with breast milk or formula in his bottle. He progressed from rice cereal to fruits, then vegetables, meats, and finally table food. When Max was eleven months old, I rented a small cottage in a nearby beach community to experience the kind of summer vacation that I had always dreamed of. My husband's schedule did not allow for vacation time in the summer, so he made the hour-long commute before and after work to be with us. One day, I had gone for a leisurely grocery-shopping trip with Max. We picked out new summer fruits for him to try, such as peaches and plums. I also purchased a tiny jar of peanut butter. I had read somewhere that peanut products should not be given to babies until their first birthday (although it did not say why), and that date being just a couple of weeks away, I could not wait for Max to taste the food that I had practically lived on for the first ten years of my life.
Upon returning to the cottage, our bodies still sandy from our earlier visit to the beach, I prepared to sit down and feed the baby. I opened up the jar of peanut butter and decided to let Max try it first on a little plastic baby spoon. His mouth no sooner made contact with the spoon than he began howling and rubbing his eyes. Max almost never cried, so I couldn't imagine what the problem could be. I stopped feeding him and watched as his eyes became redder and redder as he rubbed and pounded his little face. All at once, giant hives appeared on his face and stomach. His neck looked as if it was swelling, getting wider and wider, and his ears became thick and bright red. Max continued to cry as I lifted him up to assess what I should do. It was then that he began projectile vomiting all over me. Waves of vomit continued to spew out of his tiny mouth, and I became extremely alarmed. I ran with him to the nearest cottage, where the occupant I had met earlier tried to calm me, as by now I was crying right along with Max. This more experienced mother of three told me that Max was probably allergic to the peanut butter but that it was just an allergic reaction. She suggested an over-the-counter liquid allergy medication for hives. She did not think I should take him to the hospital. I had absolutely no idea that an allergic reaction to food could be life-threatening at the time, but I did know that what she was telling me just did not fit with what I was seeing. Max was getting increasingly worse with more hives, crying, and swelling.
I returned to the lovely seaside cottage I had rented, which had no phone. Suddenly this dream vacation seemed like the worst idea I had ever had in my life. I managed to make a call from my temperamental car phone to Max's doctor's office and was told to go directly to the nearest emergency room. I frantically wrote a note to my husband, who was due to arrive any minute. He arrived just as I was jumping back into the car and must have been thoroughly confused as I told him— crying and muttering something about peanut butter— to get in and drive to the hospital. We were not sure exactly where the hospital was, so we started to drive in that general direction hoping to see signs. Only after a couple of wrong turns did we manage to pull into the emergency room parking lot. By now I was in a panic.
The staff took us in fairly quickly upon seeing my son's swollen and red body. They immediately treated him with an injection of epinephrine and a dose of liquid antihistamine. We then spent a good amount of time in the examination room so that the doctors could observe Max, who looked more like a tiny version of the Michelin Tire Man than our baby. I have bittersweet memories of this time at the hospital. Realizing that everything was under control, we were filled with such a great sense of relief that we became almost giddy at the sight of our baby careening back and forth on the gurney from the effects of the adrenaline on his body. I remember how odd it was to see our usually reserved baby jumping around like a little monkey. Since I was technically on vacation, I had my camera in Max's diaper bag. We took a picture for our well-labeled photo album of his life that, until now, had been picture-perfect.
The emergency room staff simply told us that Max was obviously allergic to peanut butter and to avoid it in the future. This sounded reasonable to us, and we were glad that he was released that evening. I was so relieved that I quickly put the whole experience out of my mind. I was unaware then that peanut allergies are considered to be the most lethal, that the danger is lifelong, and that avoiding accidental exposure would be difficult. It was only as an afterthought that I even mentioned the emergency event at a well-baby visit with my son's doctor. He knew enough to immediately schedule an appointment with a pediatric allergist.
During his first visit to the allergist, Max was scratch-tested on his back to many common allergens. I became alarmed when I saw the giant red and swollen wheal that appeared where peanut had been tested, as well as all the other angry-looking wheals that appeared indicating that Max had allergies to every tree nut that the doctor chose to test him for. I started to get worried. It was at the consultation with the doctor, immediately following the results of the tests, that the seriousness of Max's allergy began to sink in. The doctor was kind and sympathetic but did not pull any punches. He explained that what my son had experienced at the beach cottage was called anaphylaxis, a general body reaction involving one or more systems of the body. We would need to be vigilant in preventing another reaction to all tree nuts as well as peanuts, as Max was at great risk, between the history of his reaction and positive skin tests, for experiencing anaphylaxis again. (Tree nuts include almonds; Brazil nuts; cashews; chestnuts; filberts, otherwise known as hazelnuts; hickory nuts; macadamia nuts; pecans; pine nuts, otherwise known as pinyon nuts; pistachios; and walnuts.) The doctor told us stories of children who hadn't lived through anaphylaxis and said he could not explain why some kids did while others did not. He did say that the way for us to increase the odds of having Max survive was by doing our best to prevent exposure; by being able to recognize a possible reaction, which could present itself in several different ways: and by always carrying injectable epinephrine with us. We were instructed to inject it at the first sign of a serious reaction and to follow the injection with a visit to the emergency room. This was a lot to digest and was rather shocking.
At the time, Max did not meet the minimum weight requirement to safely use the premeasured auto-injector of epinephrine, or EpiPenJr. We would instead need to carry glass ampules filled with epinephrine and separate injection needles. The doctor would not let us leave until we could break open the ampule, draw up the correct amount of epinephrine, and inject it into an orange. I remember that tears were rolling down my cheeks as I awkwardly injected the orange while looking over at my smiling, innocent baby. I looked at my husband, not knowing if he was feeling the confusion and sadness that I was, hoping all the while that I was misunderstanding what I had been hearing. I hoped his recollection of what had transpired was not what I had begun to understand. But what he had heard was indeed what I had heard, and he was equally shocked and hurt.
When I arrived home, I began to report the outcome of the doctor visit to my family members and close friends. They all meant well, but it was hard to find the support I needed. I was either met with pity and grave concern for Max or with casual responses indicating that my family and friends did not understand the seriousness of the allergy. Neither response was helpful. All this took place many years ago, and the Food Allergy Network was just being formed. Little if any information was available, and food allergy awareness was extremely low.
My response to this lack of information and support was to turn off my worry as much as possible. I lacked the necessary tools to deal with my son's allergy effectively. I let people know about the allergy, but I didn't follow through nearly as much as I should have. I was not making decisions with Max's allergy in mind. I simply continued living the way we had planned. I even continued with vacation plans that, in retrospect, put my son at risk, due to the lack of emergency treatment available. As a result of not being honest with myself I experienced what I call panic attacks, which would sneak up on me at unpredictable times. The worry was not gone, it was just hidden from my everyday thoughts. It would surprise me and come to me in full force, refusing to be ignored. Our family may have been enjoying vacations and daily life without restrictions, but the high price was the unnecessary risk to my son's life and an undercurrent of anxiety that affected every aspect of our life.
A turning point came three years later when Max was retested for the allergy to peanuts and many additional tree nuts. He was four years old, and his testing positive for all of them hit me like a ton of bricks. I had not known it consciously, but I had begun to believe out of necessity that he would somehow grow out of the allergies or that something would change. When neither of these things happened, I knew it was me who needed to make some changes.
My son's allergist hooked me up with the Food Allergy Network, which was now running at full steam, and I began to see the light at the end of the tunnel. I had made a friend locally whose child also suffered from multiple allergies. We often felt the same way about things and I began to feel supported enough to start becoming educated and making the necessary changes in my thoughts and actions.
I decided to conduct research, searching internationally for every bit of information on food allergies and anaphylaxis ever written. After learning about the physiology of anaphylaxis, I could not help but be intrigued by the many different responses of families to living with the management of a child's food allergies. I was phoned by one parent seeking state-provided respite care from the demands of caring for a child with a peanut allergy, while another parent reported that she did not regularly carry an EpiPen. As a family therapist, I could quickly see the pitfalls that this unique health concern posed to families. I developed a questionnaire for parents of food-allergic children that asked both factual and family dynamics questions. I was surprised by the attention and detail parents gave to my lengthy survey. In an era highlighted by a general lack of free time, I was amazed at the time people took to offer additional information, support for my work, and even expressions of thanks. I was compelled to follow up with phone interviews with parents all over the country. I knew I had tapped into an area that I needed to do justice to. And so the idea for this book was born.
Armed with all the knowledge I could obtain through research and great ideas about managing food allergies gleaned from the parents I had spoken to, I first put my efforts into making my own child as safe and happy as possible. I do not even like to write this for fear of tempting fate, but Max has remained reaction-free since his initial reaction. This has to be attributed to massive amounts of education, cooperation from his school and many caregivers, special prayers, and a little luck. Feeling confident that I am doing all that I can do for my son, and having gained the support from friends to deal with the anxiety about matters that are out of my control, I went forward with trying to help other parents. I did not want parents of newly diagnosed children to feel isolated and lost as I had. I wanted to at least provide them with a map of the process they would undergo. I also wanted parents of children diagnosed years ago to make sense of what they have been through and continue to make their lives physically and emotionally healthier.