By Anne Russell BSN, RN
“It’s a minefield out there”. Thus began a memorable food allergy patient education session with a 13 year old named Tim and his parents. I had worked with this family for several years. Tim is engaging and intelligent with a ready smile. He has had asthma since the age of 4 and persistent allergy to peanuts, tree nuts, and shellfish. Thus far, his asthma is only triggered by respiratory infections (e.g. colds and influenza). Tim experienced 2 episodes of anaphylaxis within a year of his sixth birthday. Each serious reaction occurred after accidental exposure to peanuts and cashew at friends’ homes during large social gatherings. Tim’s parents have shared that back then they were too new to food allergies to feel comfortable educating friends that these foods should not be served when they visited. Fortunately, Tim’s parents were present at each event. The first episode resulted in EMT treatment with epinephrine and ambulance transport to the Emergency Room. After that, Tim’s parents followed the medical recommendations to carry epinephrine auto-injectors. With the second incidence, they immediately injected the epinephrine after noting facial swelling and hives over much of Tim’s body. As instructed, they then called 911 and headed to the ER by ambulance.
Adolescence: A Game-Changer
In the last 7 years, Tim has not experienced any food-allergy reactions. This “success” is primarily the result of the family’s daily efforts with avoidance strategies which I helped formulate. Tim’s school has also been open to working with me to develop his individualized health plans. Due to his emotional maturity, Tim has been carrying epinephrine since the age of 8 in a waist pack. He only consumes food prepared at home and actively reads ingredient labels with his parents. “I never eat food that says it may contain peanuts on the label. I figure if the company isn’t sure if something they made contains peanuts, I’m not taking the chance.” Tim always repeats this to me and I always give him encouragement for making this wise choice. He denies ever being bullied at school and enjoys baseball, band and his honors science classes. His asthma is well controlled and Tim also carries a rescue inhaler. Fortunately, Tim has grown up wearing Medic Alert® identification and is very accustomed to his “allergy and asthma game plan”. Nevertheless, he and his parents have many questions about how to approach high school and the potential for, in their words, “epic dangers”. They are most interested in strategies to assess social situations.
The Upside and Downside
Several of the many positive factors in Tim’s case:
- Knowledgeable, supportive, intact family as safety net.
- Tim’s positive and effective experiences with speaking up for himself. His parents set a good example of advocating on his behalf and he has learned from them. He is not shy about questioning adults in authority if needed. Nor does he assume that teachers, principals and even all health care professionals are knowledgeable about food allergy and anaphylaxis.
- Age-appropriate participation in self-management efforts.
- Well-developed sense of empowerment in mastering food allergy related skills.
- Intelligence, maturity, resilience and self-control.
- A circle of close friends who look out for Tim.
- A prospective high school with experience at accommodating students with food allergies.
- The high school is located within 2 miles of a major hospital. All area ambulances are equipped for advanced life support and carry epinephrine. High school “red flagged” by the ambulance dispatch system for students at risk for anaphylaxis.
- A family that remains open to new information, has the means to pursue resources, and no barriers to accessing health care.
- Involvement in youth activities at church, which strengthens his spiritual growth and broadens his support network.
- A variety of healthy adaptive coping mechanisms.
Several of the many challenging factors in Tim’s case:
- The combination of food allergy, co-existing asthma and adolescence puts Tim at higher risk of severe and/or fatal anaphylaxis.[1-2]
- Tim does not have full recall regarding his anaphylactic episodes from early childhood. While he can recapitulate signs and symptoms of anaphylaxis to watch for, his perception of these physical changes may be altered in different situations.
- Anaphylaxis is a medical emergency. Teens, their friends and school staff may underestimate how quickly anaphylaxis can progress.[1-3]
- Numerous unknowns (e.g. meeting new friends unaware of food allergies; expanded social events with less adult supervision; dating). Tim and family must educate new friends, teachers and staff regarding his needs.
- With anaphylaxis, survival chances increase with prompt administration of epinephrine followed by ambulance transport to an ER.[1-3]
- Adolescents may vary in consistent willingness to carry and use epinephrine.
- Tim’s new adolescent peers will differ in terms of maturity and judgment, which can become impaired with use of drugs and alcohol.
- Adolescent peer pressures and concerns with ‘fitting in’.
- The school nurse is also responsible for 8 other schools within the district and is only on site about a ½ day, once or twice per week. Must rely on unlicensed personnel to administer medications in her absence.
Counteracting “Epic Dangers”
Parenting any adolescent is not for the fainthearted! Teens with chronic health conditions pose additional layers of challenges. Fluctuating physical, emotional, intellectual and social development can make for “risky business”. Peers’ attitudes may also influence food selection and self-carry of epinephrine. For example, research and my clinical experience show that many teens worry about whether the autoinjector is too bulky or consider it too “lame” to carry in a purse or waist pack and instead, will leave it in a locker or at home. Clearly this reduces the chance for immediate access of the epinephrine if needed. I have found that in general, the deeper the adolescent angst over fitting in, the higher the probability that a teen will engage in high-risk behavior.
Optimally, comprehensive food allergy education of teens and their families should be done within their clinic by licensed health professionals. This also allows for knowledgeable discussion of any co-existing medical conditions like asthma, attention-deficit hyperactivity disorder, immunodeficiency, etc. An individualized action plan and risk assessment matrix may help adolescents in learning to make judgment calls.
Teaching teens about food allergy risk management would include consideration of factors like these:
Where to socialize: Consider the location. Home would be considered the safest because the family is trained in avoidance strategies and anaphylaxis rescue. Home-based socializing is often supervised by adults who closely evaluate the types of food served and monitor access to any food that may be brought into the home by guests. Traveling with new peers to a new destination is an example of a higher risk circumstance. Parties, clubs and bars are high-risk locations given the potential for allergenic foods and the prevalence of alcohol and/or other drugs which can impair the judgment of the food-allergic teen and/or their peers.
Who with: Consider the number and age of people present. Will there be adults in attendance? If so, are they trained in anaphylaxis rescue and prevention strategies? If it’s a gathering of adolescent peers, have they been informed of food-allergy risks and if so, how understanding are they?
What is the purpose of the social event?: Is it a sports banquet with catered food? If so, is the catering manager food-allergy aware and willing to share meal ingredients? Is it an informal gathering at a friend’s home? Is it Thanksgiving at the home of a relative who historically does not “get” food allergy prevention techniques?
Social situations will differ according to multiple factors, including:
- People involved
- Access to emergency medical care
- Presence of food and ease of learning its accurate ingredients
- Incidence of drugs/alcohol
- Risk for bullying
- Level of food allergy awareness/training
- Attitudes toward medically necessary accommodations
- Degree of flexibility in making safe alternative food choices
- Adult and peer willingness to co-learn use of an epinephrine auto-injector
- Teens’ sense of feeling accepted with food allergies and need to carry epinephrine
- Dating and/or romantic circumstances
The more people who are familiar with the exigencies of a teen’s food allergy issues the better. However, it is imperative that a teen is in full command of his own condition by consistently carrying injectable epinephrine (e.g. EpiPen®) without any inhibition about using it. Adolescents should be actively reading all ingredient labels, avoiding foods when in doubt of the ingredients, able to identify the signs/symptoms of anaphylaxis and accurately demonstrate use of the epinephrine auto-injector.
Open discussions about how to handle dating scenarios should also occur. For example, research has shown that allergens, like peanut protein, can be transferred through saliva (e.g. kissing).I’ve worked with teens who only date peers willing to abstain from their allergenic culprits. And they have to be agreeable to co-learn anaphylaxis rescue and use of injectable epinephrine. A litmus test of sorts!
I have found that starting discussions about risk management well before adolescence creates a solid foundation. By adolescence, it then becomes almost second nature. Yes, it can be a minefield out there. But “epic dangers” can be counteracted by preparation, ongoing patient education sessions, individualized action plans, risk management analysis, creative modifications and solid support from families and health care professionals. Once they have the tools, the message to teens: this is an exciting time in your life. Make the most of it! Message to parents: You’ve prepared them as best you can. Enjoy your growing adolescent. Continue to be supportive as you let them fly!
1. 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.
2. Bock S, Munoz-Furlong A, Sampson H. Further fatalities caused by anaphylactic reactions to food, 2001-2006. J Allergy Clin Immunol. 2007;119:1016-1018.
3. Sicherer S, Simons FE. Self-injectable epinephrine for first aid management of anaphylaxis. Pediatrics. 2007;119:638-646.
4. Sampson M, Munoz-Furlong A, Sicherer S. Risk-taking and coping strategies of adolescents and young adults with food allergy. J Allergy Clin Immunol. 2006;117:1440-1445.
5. Macadam C, Barnett J, Roberts G, Stiefel G., et al. What factors affect the carriage of epinephrine auto-injectors by teenagers? Clinical and Translational Allergy. 2012;2:3, Advance online publication. doi: 10.1186/2045-7022-2-3
6. Maloney J, Martin C, Sicherer S. Peanut allergen exposure through saliva: assessment and interventions to reduce exposure. J Allergy Clin Immunol. 2006;118:719-724.
Anne Russell BSN, RN has had a clinical and educational focus on food allergy for over 15 years following experience in pediatrics and neonatology. She has served as a food allergy program coordinator in a university allergy department and was president of a state-wide nonprofit organization that provided food allergy and anaphylaxis education to families and professionals in health care, schools, and daycare centers. She’s presented on food-induced anaphylaxis at state and national conferences and initiated state legislative efforts associated with food allergy issues. For several years she served on the Member Advisory Council for the Food Allergy & Anaphylaxis Network and has collaborated with the Food Allergy Initiative. As a School Health Director for a private school, she coordinated efforts for individualized allergy and asthma health plans, trained school staff on anaphylaxis rescue and provided necessary oversight. She completed undergraduate studies in a consortium program between the Medical College of Ohio/University of Toledo Medical Center and Bowling Green State University. She has also done graduate studies toward a Masters Degree in Nursing at the University of Michigan. Currently she is an allergy/asthma nurse consultant in a private pediatric practice and adjunct faculty in Nursing at Spring Arbor University.