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Understanding and Learning to Live Well with Food Allergies
Considering that severe allergic reactions can be life-threatening, parents often find that protecting children can be a daunting task-trying to make sure they are safe, while still creating a sense of normalcy as they grow up.
But it can be done. Sorting the truth from the myths and misunderstandings, Caring for Your Child with Severe Food Allergies presents not only pertinent facts but, more important, it helps families cope with the emotional aspects of raising a child at risk for severe food reactions. With compassion and insight, Lisa Cipriano Collins blends her own experiences raising a child with severe peanut and tree-nut allergies with practical observations, interviews with parents, and data from recent medical studies. By learning how to reduce risks while promoting a child's normal emotional development, parents can address the needs of their allergic child and his or her siblings, as well as their own needs-and work toward a happy, healthy family.
Caring for Your Child with Severe Food Allergies covers:
* Identifying allergies
* Working with schools
* Restaurant and travel concerns
* Encouraging independence
* Finding treatment
* Safety risks and solutions
* Helping your child help himself
* Identifying ingredients
* Making an emergency kit
* Finding support
* Developing community awareness
"...discusses how parents & guardians can work with the child's school, find treatment & support, & encourage independence...based on research and the author's own experience with a child who suffers from food allergies."
Food Allergy Basics.
Keeping Your Family Healthy.
As Your Child Grows.
Branching Out: Working with Caregivers and Schools.
Caring for Your Child with Severe Food Allergies: Emotional Support and Practical Advice From a Parent Who's Been ThereLisa Cipriano Collins
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.
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 STORYMy 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.)
Posted March 31, 2000
My 8 month old nephew was recently found to be allergic to wheat, milk, eggs and peanuts. As one of his caregivers, I found this book an invaluable resource of information on what I can do to minimise his risk of having a reaction. The books briefly goes over the medical aspects of aniphylactic shock, but it is primarily a resource for parents and caregivers on dealing with everyday life and finding a balance between your child's physical safety, and providing a normal environment. It's a really great book for someone who is new to these kinds of allergies.
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Posted January 5, 2009
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