By: Anne F. Russell BSN, RN, AE-C
A Mother’s Story
“It happened so fast!” Melanie told me. “My daughter and I were invited to a neighbor’s Christmas party for their 4 year old twins and their pre-school friends. They are conscientious about food allergy safety. They never serve food with peanuts or tree nuts when Sarah visits. She had a severe allergic reaction to peanut butter when she was a year old. She has not had one since. We avoid peanuts, peanut products and were later told to avoid all tree nuts. I was helping in the kitchen when the hired magician threw chocolate candy Santas toward the children. They were wrapped in shiny red, green and silver foil. Sarah ate some, too. Suddenly, the magician called out. As I entered the family room, I saw hives over Sarah’s face and neck. She was uncharacteristically quiet. I snatched her up and took her to a bathroom. Hives covered her legs and arms. She began vomiting and coughing. Then I heard wheezing. I froze. I had two EpiPens® in my purse but I’ve never given anyone a shot, let alone a loved one. I convinced myself it wasn’t anaphylaxis but knew I should get Sarah to an emergency room. Fast. Just in case. We called 911. When paramedics arrived, Sarah was still wheezing, covered in hives and her lips were swollen. They gave her a shot of epinephrine, started an I.V., placed an oxygen mask over her nose and mouth and gave other medications. Sarah was hospitalized for almost 2 days. Peanuts were listed in the ingredients of the Santa candy. Everyone told me I should have used the EpiPen® immediately, but I had been too scared to do so.”
Emotional versus Intellectual Response
Melanie was weepy as she related the story in clinic. It was a common tale. She intellectually understood how to identify signs/symptoms of anaphylaxis. She could recite the protocol for prompt injection of epinephrine followed by immediate transfer via ambulance to an Emergency Room for further evaluation, treatment and observation. But when the time came, Melanie panicked. The hostess told the magician not to bring any food to the party, but he forgot. Accidental food allergen ingestions happen – especially with young children away from their own homes. Melanie froze. Fear of sticking a needle in her daughter and worry over epinephrine side effects took over. “I was afraid of making a mistake and making the situation even worse.”
It’s not surprising. And I certainly empathize. There’s a reason first responders, nurses and physicians drill and drill again. They have to be able to act automatically under stressful conditions. Unfortunately, Melanie had not practiced with an EpiPen® trainer in over two years. She described herself as “somewhat good” about remembering to never leave home without EpiPens®. But carrying them and being prepared to act are different. Sarah has typically only eaten food from home when attending holiday gatherings. She does not have asthma, atopic dermatitis or other allergies. It’s easy to drop your guard during long periods without reactions. Easy to become complacent about this constant underlying danger. Easy to stop routinely reviewing anaphylaxis protocols and practicing with an EpiPen® trainer.
Sarah does her part. At 3-1/2, she is age-appropriately involved in daily food allergy care. For example, she listens as her parents read food label ingredients to her, wears her medical identification bracelet and helps bake homemade peanut/tree nut-free cookies. The family provided Sarah’s preschool with two EpiPens®, food allergy action plan and training videos. The preschool takes strict steps to minimize peanuts/tree nuts and Sarah has never had an allergic reaction there.
Neither parent has food allergies and did not grow up with anyone that did. “I am so frustrated,” said Melanie. “We live in a world where two people can’t seem to get together without food! I have to constantly strategize food allergy safety which can get bizarre – even to me!”
“What do you think would best help you right now?” I asked. “I’m not sure,” Melanie sighed. “I guess I should re-learn EpiPen® technique.”
Taming the Fear Factor
Well, that was certainly part of it. After further discussion and needs assessment I designed an individualized patient/family educational plan to be covered over several successive follow-up visits and then yearly, at minimum. The overall objective was that by providing more in-depth educational services, with time for monitored practice, Melanie would become more comfortable and confident in her ability to appropriately manage anaphylaxis. Examples of topics we reviewed over time:
• Emphasis of avoidance as mainstay of daily food allergy management.
• Listed foods/non-foods that may contain peanuts and tree nuts.
• Poster photos which visually depict ingredient label examples.
• Potential risks of cross-contamination between peanut/tree nuts and safe foods.
• Discussion regarding ‘may contain’ peanut/tree nut labeling and avoidance of such products.
• Calling manufacturers regarding product ingredients (e.g. why, how, what to ask).
• Signs/symptoms of anaphylaxis, including biphasic reaction, with discussion/role-playing of potential scenarios and subsequent actions.
• Injectable epinephrine (e.g. purpose, indications, side effects, care/storage) with risk versus benefit discussion.
• Evaluating need for suggested number of EpiPens® based on family lifestyle. Suggestions for tracking EpiPen® prescription renewal.
• Technical review of using injectable epinephrine with ample opportunity for demonstration, observation, practice and ‘teach back’ for evaluation with a placebo (e.g. trainer) version.
• Sarah’s written food allergy action plan (FAAP) with multiple copies for home, pre-school etc.
• Rationale for carrying a copy of the FAAP and two EpiPens® whenever leaving home.
• Emphasis on immediate call to 911 with prompt transfer of Sarah via ambulance to an Emergency Room after administration of epinephrine.
• Role-playing with entire family on managing potential scenarios which Sarah may encounter involving possible exposures to peanuts and tree nuts.
• Transitioning pre-school FAAPs and management guidelines to elementary school with my provision of on-site food allergy/anaphylaxis training to school staff.
• Suggested coping strategies for anxiety management.
• Planning home anaphylaxis drills to further practice the FAAP, using EpiPen® trainer. Thus increasing probability that such skill practice will more naturally ‘kick-in’ if anaphylaxis occurs.
To Give or Not to Give
It can be heart wrenching to witness your beloved child in the throes of anaphylaxis. But it is one medical emergency that a trained parent/caregiver can act upon. Establish routines for never leaving home without a FAAP, EpiPens® and working cell phone. Over time, it really does become second nature! If your little one develops anaphylaxis after a known or suspected accidental exposure to a food allergen but you are not sure whether to administer the EpiPen® – give it (always into an outer thigh muscle) and call 911.
Err on the side of safety! Epinephrine is safe and the alternative is unthinkable. The side effects (e.g. higher heart rate, jitteriness, headache) usually last only minutes and subside with rest.[1] Timing is essential as delayed administration has been associated with fatalities or near-fatalities.[2] Anaphylaxis episodes are unpredictable in how they may progress – even in the same individual. So, be prepared and have your tools (e.g. FAAP, EpiPens®) available at all times. Practice via anaphylaxis drills as often as necessary to develop greater ease. At clinic visits, review use of the epinephrine auto-injector with health care team members that can provide feedback on your technique.[3]
Anaphylaxis is a medical emergency because it’s life threatening. Seconds really do count. The sooner the epinephrine shot is given with transfer via ambulance to an ER, the better for the child. Yes, anaphylaxis creates a stressful family crisis. It leaves indelible memories. Emotions run high. One way to tame the fear is through ongoing preparation and FAAP practice. For many families it’s a monthly routine with added refresher training before major events, like holidays.
Be mentally and technically prepared. Stay as calm as possible. Act accordingly. You can do this! Then, have a good cry afterward!
From Newly Diagnosed to Knowledgeable Parent
Anaphylaxis is frightening to endure, observe and/or be at risk for. Lack of accurate and/or incomplete information may also fuel fears. This article does not provide an exhaustive listing of all related aspects of this topic. Further information is available in the resource list. Ongoing, comprehensive, individualized patient education from qualified health care professionals with concurrent guidance and evaluation can empower families. Clinical nurse educators with undergraduate and/or graduate degrees in Nursing are trained to provide patient educational services, case management and coordination of care. Essential services for families coping with chronic medical conditions like food allergy/anaphylaxis. Prevention strategies may still feel like a daily grind. And treating anaphylaxis may still be anxiety provoking. But when given multiple tools and personalized, research-based patient education and support, families coping with food allergy and risk for anaphylaxis can conquer fears and thrive!
Selected Resources for Parents
Allergy Free Table
Allergy Home
Anaphylaxis Canada
Anaphylaxis Resources by John Weiner MD
Food Allergy & Anaphylaxis Network: Anaphylaxis Do’s and Don’ts
Food Allergy Education Program by Consortium of Food Allergy Research
Food Allergy Initiative: Anaphylaxis
Get Schooled in Anaphylaxis
My EpiPen® App and Resources
NIAID Guidelines for Diagnosis & Management of Food Allergy in USA – Summary for Patients & Families
The Food Allergy Experience: Real voices. Real disease. Real insights. By R. Gupta MD, MPH & D. Bunning
Carriers for Injectable Epinephrine
Allergy Pack
Epi-Essentials
Epi-Ready
One Spot Allergy
Food Allergies & Children’s Books
Allergic Child – Children’s Books by Nicole Smith
The Bugabees: Friends With Food Allergies by Amy Recob
The No Biggie Bunch Everyday Cool with Food Allergies by Michael Pistiner MD
The Princess and the Peanut: A Royally Allergic Tale by Sue Ganz-Schmitt
Food Allergies & Cookbooks
Allergen-Free Baker’s Handbook by Cybele Pascal
Divvies Bakery Cookbook: No Nuts. No Eggs. No Dairy. Just Delicious! by Lori Sandler
Food Allergy Mama’s Baking Book by Kelly Rudnicki
Go Dairy Free by Alisa Marie Fleming
Learning to Bake Allergen-Free by Collette Martin
Neocate Food Allergy Cookbook
What’s to Eat? The Milk-Free, Egg-Free, Nut-Free Food Allergy Cookbook by Linda Coss
Food Allergies & Holidays
ACAAI Holiday Tips for Those with Food Allergies
Allergies, Asthma and Winter Holidays by AAAAI
Hidden Holiday Food Allergens – Infographic by National Jewish Health
Holiday Allergies/ Food Allergies: How to Plan by AAFA
Home for the Holidays via AANMA
Medical Identification
Medic Alert Foundation
Videos
Anaphylaxis Signs and Treatment – WebMD
Be Safe from Anaphylaxis – Mayo Clinic
How to Use an Epinephrine Autoinjector with Elisabeth Stieb RN, BSN, AE-C
When to Use an Epinephrine Autoinjector-for Parents with Wayne Shreffler MD, PhD
Article References
1. Kemp S, Lockey R, Simons FE. Epinephrine: the drug of choice for anaphylaxis-a statement of the World Allergy Organization. Allergy. 2008;63:1061-1070.
2. Boyce JA, Assa’ad A, Burks AW, et al. Guidelines for the diagnosis and management of food allergy in the United States: report of the NIAID-sponsored expert panel. J Allergy Clin Immunol. 2010;126(6suppl):S1-S58.
3. Russell AF, Gosbee LL, Huber MM. Part 2: Pertinent Food Allergy Education in a Pediatric Ambulatory Care Setting with a Focus on Anaphylaxis. J Asthma Allergy Educators. 2012;3(4)162-171.
Anne F. Russell BSN, RN, AE-C has had a clinical and educational focus on food allergy & anaphylaxis for over 15 years. She served as Food Allergy Program Coordinator in a university allergy department. She was President of Food Anaphylaxis Education, Inc – a state-wide nonprofit. As a food allergy/anaphylaxis community educator, Anne has presented at conferences, numerous schools, daycares and churches. She has also initiated/collaborated on related state legislative efforts. As School Health Director in a preschool-12th grade academy, she coordinated individualized health plans; trained school staff on anaphylaxis prevention, identification and rescue; and provided oversight. Anne has served on the FAAN Member Advisory Council, has collaborated with FAI and is a recipient of a FAAN Make a Difference award. She is a nationally board certified asthma educator by NAECB examination and has done graduate studies toward a Masters in Nursing. As a food allergy/anaphylaxis educator, Anne has also provided clinical nurse educator services within primary pediatrics and allergy clinics. She is also a Nursing faculty member at Spring Arbor University and mother of a beloved son with food allergies, asthma and atopic dermatitis.
(The case description provided in this article is fictional. Information provided in this article does not replace medical advice from a patient’s own health care provider. Any external hyperlinks, websites, and resources cited do not necessarily reflect endorsement by the reviewers, the author, their employers or owners of this website. The author, reviewers and the owners of this website cannot take responsibility for the accuracy or quality of content given in websites, products and resources mentioned in this article.)
Santa by german-sausages-philippines.com
Injection by medicinesforchildren.org.uk
We practice using our expired epipens on oranges every year. It really mimics the feel of acutally injecting the pen into the thigh of a person. Of course, throw away the orange and then give the used pen to the doctor to throw away.
But, just this month our son, who we didn’t know know was tree nut allergic, but peanut allergic, was exposed to a walnut at preschool. He only gets hives without breathing issues (for now), and would have been fine with a dose of benedryl. However, the teacher, thankfully erring on the side of caution gave the epipen. Saved him! When in doubt get the epipen and administer it!
Thank you so much for including me in this fabulous resource post Anne!
You are most welcome Alisa!
Excellent Article..I plan on sharing this on my blog. Quite honestly, this was one of my fears too. I constantly remind myself that I will need to err on the side of caution.
I have heard from friends that sometimes denial stopped them from grabbing their epinephrine auto injector too.
I am a huge fan of Anne! Keep up the good work.
I read this article from start to finish with great interest. So many concerns were introduced within an easy-to-read, understandable, anecdotal format.
The story of the mother afraid to give a necessary epinephrine injection hit home. As a teacher, only trained once in the use of the Epipen, I would have to overcome my fear of doing something wrong in order to use it in an emergency. I hope I would act in spite of my fears, but one never knows for sure. More drills would give confidence. Teachers and school employees should also follow Anne’s astute advice to drill and drill again.
Anne, keep up your important life-saving work!
Thank you so much Caroline and Laura! Your thoughtful comments are very appreciated.