The food allergy community has been waiting for needle-free epinephrine delivery options for years. Recently, much to the food allergy community’s dismay, the FDA refused to approve the first needle-free epinephrine medication — neffy nasal spray from ARS Pharmaceuticals — despite an FDA sub-committee recommendation to approve it to treat anaphylaxis. The FDA is now requiring ARS Pharmaceuticals to show clinical proof of the efficacy of two doses of epinephrine delivered intra-nasally when there’s nasal congestion from allergic rhinitis.
But, hope remains in our community that there will be an effective alternative to epinephrine auto-injectors available in the not too distant future.
So, until then, what can you do to make using an epinephrine auto-injector less scary, for your child and for yourself?
We asked some experienced food allergy moms who have had to use their epinephrine auto-injectors about their experiences using it, if they hesitated to use it and why, and what they have done to make it less scary and stressful for their kids and themselves.
Making the Call: to Use or Not to Use the Auto-injector for an Allergic Reaction*
Francesca McGuire, creator of @frankeesfoodallergyfamily on Instagram has two boys with multiple, severe food allergies. Francesca’s had to use their auto-injectors a total of 9 times — 8 times at home and once in a doctor’s office to treat a failed food challenge.
She was initially prescribed EpiPen Jr. by a doctor who was not an allergist and was given no direction on how to use it. She googled articles to figure it out. She admits, “I was so overwhelmed by having to swing and jab this needle into my child. I knew I was going to do it wrong, or be too scared to use it in-the-moment.” Her allergist then prescribed Auvi-Q, the auto-injector that talks you through using it, step-by-step.
The week they received the Auvi-Q was the first time they needed to use it. Francesca recounts that she was scared, seeing her child in such distress. But, she knew what had to be done. By the time the paramedics arrived after her frantic 911 call, her son was laughing and smiling. She remembers, “from that moment on I swore I would never hesitate to use it. And I haven’t. Each of the 7 times since we’ve been able to recognize anaphylaxis and stop it in its tracks. With confidence.”
Hillary Tolle Carter, food allergy mom, advocate, Board member, and WebMD contributing writer, has two boys with multiple, potentially life-threatening food allergies. She shares her journey on hillarytollecarter.com and on Instagram @hillarytollecarter. Her boys have needed epinephrine 9 times, 2 of those during oral food challenges. Their first anaphylactic reaction was when her youngest son was an infant and was nearly fatal with no epinephrine on hand. Additionally, for several reactions, it’s taken multiple doses of epinephrine to arrest them. “Because I have seen what anaphylaxis can do, and because I almost lost a child to it, I never hesitate to use our auto-injectors,” shares Hillary.
Lindsay Schultz, founder of Feed Your Can and mom of three with food allergies has used their epinephrine auto-injectors three times, once for one of her daughters, and twice for her son. She’s had to wrestle with a gray zone call.
The first time, the decision to use epinephrine was crystal clear. Her daughter had eaten peanuts and began coughing and choking, with hives and a puffy face—all within two minutes. She remembers, “I was nervous but didn’t hesitate, given what I was seeing with my daughter.”
But, injecting her son was a different story. Her son has reacted two times to egg with repetitive vomiting and dizziness. “I was less confident the first time because there were no visible hives, rashes, or breathing issues I could see,” she explains. With his first reaction she remembered that because he had two symptoms involving different body organs they needed to use epinephrine. Their action plan reassured her and gave her the courage to stop hesitating and inject. That’s not to say it went smoothly. She was shaking, he was nervous, and her daughters watched with fear as well. The fear was of the needle itself. Fast-forward three years and her son just had his second reaction. This time, however, they both were calm and confident, knowing exactly what to do.
In both Francesca and Hillarys’ experience with allergic reactions, most of the reactions were obvious and they didn’t have time to even doubt using their epinephrine, while Lindsay wrestled with ambiguous symptoms and had to make a judgment call.
Hillary sums it up neatly, “Bad things happen when epinephrine is NOT given. The longer you wait to give it, the harder it is to reverse the reaction. If you have questions about the severity of the reaction, epi first, epi fast. I know epinephrine is safe to use from all the research I’ve done and the dozens of conversations I’ve had with multiple doctors.”
“The ‘better safe than sorry’ mantra is oh-so-relevant in these situations. Epi first, epi fast!”
—Francesca McGuire
When Needle-fear Takes Root
Gayle Rigione , Co-founder of Allergy Force, has a son who was diagnosed with multiple food allergies in the late 90’s. They muddled through at a time when the food allergy epidemic was just gaining ground. There was no food allergy know-how just a Google search away. FAACT didn’t exist, and FARE was FAAN. There was no Facebook. Things have evolved a lot in the last 25 years.
Her son had an Emergency Action Plan from his allergist, but they considered it a ‘last resort’ plan because he never presented with symptoms they clearly recognized as anaphylaxis. He never had breathing difficulty or swathes of hives. Not once. Gayle remembers, “He’d cough then vomit violently within an hour of an exposure, then done. We’d call it a day.”
If they used medication, they used Benadryl, then watched and waited for hives or breathing symptoms. “We were very, very lucky,” Gayle admits. “Think guardian angels.”
She recalls, “The IDEA of using the epinephrine auto-injector took on a life of its own in our heads. The needle became larger than life and scarier than it should have been for us.”
It wasn’t until their son was a college sophomore that he first used his auto-injector. True to form, he first reached for antihistamine, then he violently vomited. But this reaction was different. “Mom, I’m afraid I’m going to die,” Gayle remembers him saying, pale faced and shaking. He fumbled with his Auvi-Q, trusting the voice instructions to guide him. After the shot, his relief was immediate, then they raced to the ER where they spent most of the night.
His take on using his Auvi-Q? “Mom, that wasn’t so bad.”
“The needle-fear that was deeply rooted in all of us — for 18 years— evaporated with just one use of his auto-injector.”
—Gayle Rigione
What Research Says About Epinephrine Hesitation
The beauty of the auto-injector is that it allows a life saving medication to be quickly and correctly administered by just about anyone, no medical degree needed. So why do people hesitate to use it?
In a paper published in the Annals of Allergy, Asthma & Immunology — ‘Innovations in the treatment of anaphylaxis: A review of recent data ‘ — Jay A. Lieberman, MD, et al cited a survey of 200 patients and caregivers that found that 40% of respondents delayed use of an auto-injector. Reported reasons included:
- Uncertainty whether the symptoms warranted use
- Fear of the needle
- The need to go to the ER after using the device
- Worry over adverse effects
- Fear of pain
- The size of the device.
What Families Say About Epinephrine Hesitation
Our lived experience shapes our beliefs and often guides our actions…for better or worse.
In Hillary’s case, the near fatal reaction her infant son had before he was ever formally diagnosed never allowed any doubts about using epinephrine to take root in their minds. Epi first, epi fast is the family rule they live by.
In Gayle’s case, fear of the needle and the anticipated pain of the shot, plus lack of clarity on whether symptoms warranted epinephrine caused them to wait and see, sometimes reaching for Benadryl, sometimes not. They didn’t know coughing + vomiting warranted using epinephrine right away. Their son’s action plan for using epinephrine is crystal clear today, even when symptoms are murky.
Lindsay adds that beyond fear of the needle, “Adults and teens especially see the inconvenience of losing time (multiple hours) by having to go to the hospital for emergency department observation, especially when symptoms are not clear cut. It’s very disruptive to schedules. Oftentimes people lose sight of safety as the first priority when deadlines and time-sensitive pressures pile up and they’re pulled in different directions.”
Francesca attributes people’s hesitancy to use their epinephrine to the ‘drama’ and extra expense that comes with using the device. “When you use it, protocol is to call 911. Having an ambulance fly up to your house with sirens blaring, and staying in an ER for 4+ hours and getting sizable bills for all those things is a lot to handle for most people (emotionally and financially),” reflects Francesca. “It’s not something you want to go through if you’re not absolutely sure…which makes you hesitate to use it.”
Hillary’s take on hesitation echoes Lindsay and Francesca. “I think for many parents, knowing that you have to call an ambulance then sit in the ER can be a really big barrier.”
Overcoming Hesitation
Francesca tries about once a month to get her boys (ages 3 and 5) to hold their Auvi-Q trainers and play with them. But they won’t. “I think they have some trauma with the memories of the moments we’ve had to use it,” she reflects, adding, “They do know it’s what makes them better though, so much so that our oldest actually asked for “the shot” before we gave it to him.” Even though her kids won’t ‘play’ with their Auvi-Q trainers, Francesca knows they believe in it to make them feel better when they’ve eaten the wrong thing. They carry their red bags with Auvi-Q’s everywhere.
Lindsay shares that when she saw that her children (ages 8, 8 and 11) were afraid of the EpiPen (of its needle) when she injected her son the first time, she realized what a miss it had been not to expose her kids more to the trainer. For so long, Lindsay had inadvertently ‘hidden’ the Auvi-Q device from her kids in the family allergy bag they carried everywhere. She realized she needed to focus on making the auto-injector more visible and available as a handy tool to help destigmatize the needle fear. “We had to flip the script on fear.”
For starters, her family started referring to the “Epi” as a PEN, like a helpful tool that’s in their bag or backpack. She also gave her preschoolers their Epi trainers to play with, showing them how it works and letting them practice on their dolls. Lindsay found, “The more we normalized handling Epi, and made it part of the routine, the less my kids feared it.” Lindsay’s son started self-carrying his Auvi-Q in 4th grade, with two devices tucked inside a small ‘personal items belt’ under his shirt. Her son recently had his second severe reaction to egg, and beyond being calm using the auto-injector, her son told her afterwards, “Mom, I was actually looking forward to the medicine because I knew how it would make me feel.”
Hillary’s boys (ages 11 and 13) both self-carry medicine bags with their epinephrine. For Hillary, making the epi a normal part of their lives was really important to her. She explains, “We began teaching them how to use the trainer devices years ago and we regularly have the boys practice sharing their list of allergens so they are ready to speak up for themselves in any situation.”
Other ways Hillary tries to normalize using epinephrine is by talking about the different ways allergic reactions can present (have presented) since every reaction can be different. Even during a reaction, Hillary adds, “I talk my boys through it. They are always part of the discussion and the decision to epi. Even though they haven’t actually administered the epi themselves yet, I want them to feel empowered about the process.”
For Gayle’s family, the first use of our auto-injector burst the bubble of fear that blocked them. It right-sized the process and the discomfort of using it in their heads when they saw how quickly it worked. Gayle explains, “There are definitely some hidden benefits to using the auto-injector, beyond the obvious, like demonstrating up close and personal that ‘it’s not so bad’. The first time out of the gate is the hardest.”
“My children were afraid of the EpiPen so we had to flip the script on fear.”
—Lindsay Schultz
Key Takeaways
1) QUELL YOUR AUTO-INJECTOR HESITATION. SECONDS COUNT.
Keep copies of your kids emergency action plans everywhere—in their medication bags, at school, in the kitchen, with caregivers and family members. FARE has an excellent one. Review it often as a family so everyone understands what to do for a reaction and when to use epinephrine.
Help your kids get comfortable with their auto-injector before ever using it. Training devices are perfect for this. Give little ones their trainers to use on their dolls and stuffed toys. Talk them through using it. For older kids, use their expired auto-injectors to practice on oranges, grapefruits. Practice leads to unerring action when it counts.
Don’t fear using your epinephrine auto-injector. The medication works quickly and could save the life of someone you love.
2) EPI FIRST. EPI FAST.
If you are uncertain whether or not a reaction warrants epinephrine, use it right away, because epinephrine benefits far outweigh the risk that a dose may not have been necessary.
If the severity of a reaction is unclear, administer epinephrine when symptoms involve two or more body organs (skin, respiratory system, digestive system, heart.)
3) KNOW THE DIFFERENCE BETWEEN MILD AND SEVERE REACTION SYMPTOMS.
Remember that previous reactions do not predict the course or severity of future reactions. Reactions may not always present the same with the same symptoms and in the same sequence.
4) QUICKER USE OF EPINEPHRINE LEADS TO BETTER OUTCOMES.
Delayed use of epinephrine in anaphylaxis is associated with an increased risk of hospitalization and poor outcomes. Optimize reaction outcomes by using epinephrine quickly.
“I always err on the side of abundant caution and give epi whenever there is a question of an anaphylactic reaction.”
—Hillary Tolle Carter
*The information in this post is not intended to serve as medical advice and links have been provided to trusted food allergy resources — published by medical and advocacy organizations — for your reference. For medical advice and guidance specific to your situation please contact your medical provider.
Allergy Force is committed to helping people with food allergies live freely — with less fear, less anxiety, more confidence — through technology and education. The Allergy Force food allergy app is peace of mind in your pocket.. |
|
… |
|
Images: Annie Spratt on Unsplash and Allergy Force Canva creation