Living Confidently With Food Allergy A guide for parents and families Michael Pistiner, MD, MMSc Jennifer LeBovidge, PhD Laura Bantock Lauren James Laurie Harada PLEASE READ THIS NOTE BEFORE READING THE HANDBOOK The information in this handbook is general in nature and for information and educational purposes only. It is meant to help people learn how to manage a child’s allergies. It is not meant to give specific medical advice, recommendations, diagnosis, or treatment. Readers should not rely on any information contained in this handbook as a replacement or substitute for professional medical advice or diagnosis or treatment. Nor should they delay getting professional medical advice or treatment because of information contained in this handbook. Medical knowledge is constantly developing. Please speak with your child’s doctor or other healthcare professional before making any medical decision that affects your child or if you have any questions or concerns about their food allergies. The authors of this handbook – Michael Pistiner, Jennifer LeBovidge and Anaphylaxis Canada – as well as individual contributors and reviewers will not be held responsible for any action taken or not taken based on, or as a result of, the reader’s interpretation or understanding of the information contained or referred to herein. Living Confidently with Food Allergy – Page 2 The development of this handbook has been supported through an unrestricted educational grant from Scotiabank and the proceeds of The Annual Sean Delaney Memorial Golf Classic. Living Confidently with Food Allergy – Page 3 Dear Parent, Will my child have a normal life? What can my child eat? Can my child safely stay with a We know that it can be overwhelming to be told that your child has a food allergy. You might be babysitter or go to a childcare centre or school? Could I use an auto-injector if I had to? Could my child wondering: die? How will I be able to cope with all of this? You may feel like you are alone, but you are not. Many parents have these same worries. Things change when your child has a food allergy. You have to be careful all the time, when buying and preparing food and when eating away from home. You need to teach others to care for your child at home, childcare centres, schools, and family or social events. This can be very stressful at first. Through our experiences as healthcare providers and parents of children with food allergy, we have learned that families do well when they know the facts about food allergy and what they can do to keep their children happy and safe. That is why we created this handbook. This handbook is meant to teach you important information about food allergy, suggest ways to educate your child and others, and offer helpful tips and support. We suggest that you go through the “must-read” sections of the handbook first, from Frequently Asked Questions to Managing Food Allergy at Home. Then read the other sections as you need information. You can go at your own pace. To help you understand and build skills, we have put together a number of real-life exercises. We have also created a list of trusted resources about food allergies that you may find helpful. You can download activity sheets, exercises, and resource sheets from www.anaphylaxis.ca and www.AllergyHome.org. Please keep in mind that this handbook is a resource to help you learn. It does NOT replace advice from your child’s doctor. Speak with your doctor directly if you have questions or are worried about your child. You will find that as you learn more, managing allergies will become part of your daily life. You will begin to feel more in control and less anxious or worried about your child’s allergy. Your child will feel better as they learn about their food allergy and become involved in daily routines. We hope that the information in this handbook will help you and your child to feel confident about handling food allergies! Warmly, Anaphylaxis Canada - Michael Pistiner, MD, MMSc, Pediatric Allergist Laura Bantock, Director, Western Region Jennifer LeBovidge, PhD, Pediatric Psychologist Lauren James, Development Coordinator Laurie Harada, Executive Director Living Confidently with Food Allergy – Page 4 Table of Contents Frequently Asked Questions .....................................6 How to Avoid Allergens Avoiding Food Allergens ........................................9 Understanding Labels .........................................11 Cross-Contamination (Cross-Contact) ............................14 How to Recognize & Treat a Reaction Signs & Symptoms ...........................................17 Dealing with Emergencies .....................................18 Being prepared .............................................18 If there is an emergency. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .19 Learning from a reaction .....................................21 Epinephrine .................................................22 Daily Life - Putting it All Together Managing Food Allergy at Home ................................24 Play Dates, Parties & Other Activities .............................26 Relatives & Babysitters ........................................28 Childcare & School ...........................................30 Dining Out at Restaurants .....................................32 Travel ......................................................34 Looking at the Challenges Managing Anxiety & Feeling in Control ...........................37 When Children Feel Different or Frustrated ........................39 You are a Role Model .........................................40 Teaching Others about Food Allergy ..............................41 At-Risk Groups - Asthma & Teens Food Allergy & Asthma ........................................43 Food Allergy & Teenagers ......................................45 About the Authors ............................................48 List of Reviewers .............................................49 References ..................................................50 Living Confidently with Food Allergy – Page 5 Frequently Asked Questions What is a food allergy? Your immune system normally protects you from germs and disease. It helps you to fight off bacteria, viruses, and other tiny organisms that can make you sick. If you have a food allergy, your immune system mistakenly treats something in a particular food (most often, the protein) as if it’s dangerous to you. Your body reacts to the food by having an allergic reaction. What is an allergen? An allergen is anything that causes an allergic reaction. What are the most common food allergens? People can be allergic to practically any food, but the most common food allergens are milk, eggs, peanuts, tree nuts (such as cashew), fish, crustacean/shellfish (such as crab, lobster, shrimp), mollusk/shellfish (such as clam, scallops), wheat, and soy.2 These “Major 8”, as they are called in the US, are also common allergens in Canada where they are called “Priority Allergens”. Canada’s priority allergens also include sesame, mustard and sulphite. According to Health Canada, sulphites do not cause a true allergic reaction; sulphite-sensitive people can experience similar reactions as those with food allergies.1 CANADA MILK EGG TREE NUTS PEANUTS WHEAT MUSTARD SEED FISH* CRUSTACEAN* SHELLFISH* SULPHITE SOY SESAME *Seafood UNITED STATES MILK EGG TREE NUTS PEANUTS WHEAT FISH CRUSTACEAN SOY SHELLFISH Living Confidently with Food Allergy – Page 6 What are the common symptoms of an allergic reaction? In the same person, each reaction can be different. Symptoms can include hives, itching, flushed skin, stomach pain, vomiting, diarrhea, hoarse voice, swelling of the lips, tongue, or throat, coughing, wheezing, sneezing, shortness of breath, irritability, confusion, sweating, dizziness, fainting, loss of consciousness and others.2 3 What is anaphylaxis? Anaphylaxis is a severe life-threatening allergic reaction. At present, tests cannot tell us how severe a person’s reaction will be. It is also difficult for doctors to tell which patients are at risk for a severe reaction.2 3 How fast can a reaction to a food occur? Most allergic reactions happen within minutes, but some can occur a few hours after exposure.2 How do you manage a food allergy? People with food allergies must avoid coming into contact with foods that cause them to react (e.g. eating, touching). They must also be ready to treat an allergic reaction with emergency medication and get medical help. What is cross-contamination (also known as cross-contact)? These terms are used to describe the presence of an allergen that is transferred from one food or object to another. For example, cookies baked on the same tray as peanut butter cookies pose a risk of cross-contamination to someone with peanut allergy. What is epinephrine? Epinephrine (also known as adrenaline) is the medicine of choice used to treat a severe allergic reaction, anaphylaxis. It works quickly to reverse the symptoms of anaphylaxis, but in some cases, a second dose may be needed. The effects of epinephrine may only be temporary.2 3 4 What is an epinephrine auto-injector? This is a medical device used during an allergy emergency to give a measured dose of epinephrine into the thigh muscle. What is an auto-injector training device? This looks like a real auto-injector but does not have a needle or medication in it. It is used for practice and to show people how to use the real auto-injector in an emergency. What is an Anaphylaxis Emergency Plan? There are different names for written plans, such as Emergency Care Plan and Food Allergy Action Plan. The plan is generally a 1 page document that gives detailed information about your child’s food allergies. It also includes important information on symptoms, how to treat a reaction and how to get emergency help. Living Confidently with Food Allergy – Page 7 s n e g r e l l A d i o v A o t w o H Living Confidently with Food Allergy – Page 8 Avoiding Food Allergens An allergen is anything that causes an allergic reaction, such as certain foods. People can be allergic to almost any food, but for labelling purposes the most common food allergens are known as “priority” or “major” allergens. There are different ways to come in contact with a food allergen, they are: eating, touching and in rare cases, inhaling the food protein. Contact with the nose and eyes can also cause a reaction. Understanding how to avoid contact with a food allergen will help prevent allergic reactions. Oral ingestion (mouth) Eating an allergen causes most serious reactions. Other ways that allergens could be ingested are through saliva (e.g. kissing) or cross-contamination.5 Even ingesting a small amount of a food allergen can cause a reaction. Most of these reactions can be prevented by reading labels and taking steps to prevent cross- contamination. Skin contact (touch) Skin contact can cause hives or other skin symptoms where the allergen touches the skin. In most cases, healthy skin does a good job of keeping allergens out of our bodies, and serious reactions from skin contact are rare.6 7 If an allergen comes in contact with skin, wash it off to decrease the chance that it will accidentally get into the mouth, eyes or nose (where it can possibly cause a more serious reaction). This is why washing hands before eating or touching the eyes, nose or mouth is important.8 Keep in mind that people, especially young children, frequently touch their mouths, as well as their eyes and nose.9 10 Inhalation (breathing in) In some cases, allergic reactions can happen when food proteins are inhaled through the air, such as: • In steam from cooking food (e.g. sizzling fish) • When food in a powdered form is released into the air (e.g. blowing powdered milk) • When small amounts get into the air when food is crushed or ground (e.g. tree nuts).8 These reactions are usually mild, but in rare cases people have had severe reactions.6 8 11 Living Confidently with Food Allergy – Page 9 The smell of a food alone cannot cause an allergic reaction. The smell is caused by volatile organic compounds (VOCs) , which are not proteins. Teaching Children Here are some simple rules to teach your child and things for them to keep in mind: • Wash your hands before eating or touching your nose, eyes or mouth. • Only eat food that is made for you. It’s not safe to share food. • Don’t share spoons, forks, knives, cups, bottles or straws. • If you get an allergen on your skin, ask an adult for help, clean it off and wash your hands. Make hand-washing fun for young kids - sing a song that lasts about 30 seconds. Living Confidently with Food Allergy – Page 10