I reflected on my own food allergy parenting journey as I listened to Jenny Wooton Andjelkovic speak at a FARE (Food Allergy, Research & Education) gathering where she was recognized for her support of the food allergy community. Jenny has volunteered countless hours, organizing ‘support coffees’ and speaker series for Connecticut families affected by food allergies, dedicating time to 1:1 conversations, educating local school personnel, and organizing family events to raise money and build awareness for the food allergy epidemic.
Allergy Force caught up with Jenny after the event to learn more. During our chat, Jenny shared some of the hard lessons she’s learned along the way. These lessons inspire her to reach out and support others traveling the same road.
“It seemed impossible to me that my three healthy, chubby and thriving babies could be so deathly allergic to food.”
Jenny ruefully recounts, “I blamed myself for the peanut butter cravings I had during my pregnancy and the daily peanut butter rice cake I had for breakfast during 12 months of nursing.“
When she was pregnant with her second child, a son, Jenny avoided all nuts. At one year, she had him tested for food allergies, and he also tested positive to all tree nuts and peanuts. Jenny and her husband were ‘0 for 2’ at that point.
When her third child was born, a daughter, her allergist advised going on ‘nut dates’. Her youngest handled all tree nuts without incident, so Jenny and her husband thought they’d broken the family food allergy cycle. Not so much. At age six, after numerous rounds of diagnostic testing returning negative results, Jenny’s youngest child was diagnosed with FPIES. Jenny recalls, “The allergy pattern seems so crystal clear, so obvious, in retrospect. But at the time, we were in denial and negative test results gave us false comfort.” She continued, “It seemed impossible to me that these three healthy, chubby and thriving babies could be so deathly allergic to food.”
“Experiencing your first anaphylactic reaction is a pivotal moment in your life. It’s a turning point that alters you and life as you know it…forever.”
Over time, Jenny’s older children experienced many allergic reactions….
At two, her oldest daughter ate pasta with walnut oil in the sauce. Jenny missed it on the label. Her daughter had hives on her face and down her neck, but Benadryl did the trick and calmed everything down.
At four, her oldest ate chocolate cake with nuts hidden in it. Again, Jenny missed it on a {confusing} label. Her daughter complained of a tummy ache and had hives, but despite the allergist’s warning to inject epinephrine asap, Benadryl again did the trick.
There was the time they walked into a fast food restaurant with her son and his eyes swelled to the size of golf balls within seconds. The restaurant was serving cracked, shelled peanuts. Again, Benadryl did the trick and calmed the reaction.
There was the time her two oldest children complained their mouths were itchy after a restaurant outing. Both children threw up in tandem in the car. Again, Benadryl solved the problem.
Then there was THE time…
“It was a moment when the worst fear that lurked in the corners of my mind was realized.”
Jenny had just brought her infant daughter home from the hospital. Her oldest asked if she could eat a sugar cookie they’d received as a gift. Jenny gave the label a careful read and it seemed ok. What she missed was that two labels were stuck together, with an incorrect label covering the correct one listing walnuts.
Her daughter took a bite and pushed the cookie away. Within seconds she started coughing, sneezing and vomiting. Jenny recalls, “I went into over-drive, handing off the baby and my 3-year-old to my sister so I could put my daughter to bed. I didn’t want anyone else in the family getting…the ‘stomach bug’!“
In her bath, her daughter asked Jenny not to leave her alone, over and over; her daughter felt a sense of impending doom. “This went right over my head,” Jenny remembers, shaking her head. Jenny put her daughter to bed and raced back downstairs to her newborn, desperate to sanitize everything before the little ones caught the ‘bug’.
When anaphylaxis strikes, seconds matter. You have to recognize the signs and inject epinephrine asap.
Jenny called her allergist and barely got the words out when the nurse told her to hang up and call 911. She sprinted for the stairs, epi injector in hand. “When I reached her bed,” Jenny shudders, “my daughter didn’t have any color in her face. Her lips were completely blue. She was wheezing and barely able to get a breath, nearly unconscious. Our fate was being determined by a mere matter of seconds.”
Jenny shot the epinephrine into her daughter’s tiny thigh and watched her come back to life — almost instantly. In the ambulance twenty minutes later, her daughter had a rebound reaction that required a second dose of epinephrine, oxygen and a Benadryl IV. Jenny remembers, “And finally, all that time later, the familiar hives showed up.”
In that moment Jenny realized that despite years of educating others about food allergies, despite years preparing to handle an anaphylactic emergency, she hadn’t truly believed that food could kill her child. She’d been ‘in complete denial’.
So many of us are ‘in complete denial’. So many of us, in that pivotal moment, in that span of seconds, think that maybe…
…‘the signs aren’t serious enough’, or
…‘they are different from last time’, or
…‘it’s never progressed any further than this so it won’t this time either’, or
…‘I don’t want to put my daughter through the drama of an ambulance’, or
…‘I don’t want to go through the hassle of the ER for a false alarm’, or
…’I don’t want to make it a big ordeal for my son, for me, if it isn’t the real deal’
all wasting precious, limited time!
“The raw vulnerability from a threat to the life of someone I love more than life itself was seared into my mind and heart.”
“I never want to make that mistake again, disbelieving my child’s vulnerability,” says Jenny, reflecting further, “I don’t want my children or any other families to make the same mistake either. The story could so easily have ended another way. It was only a matter of seconds. Many families living with food allergies have had that moment. Hopefully there are also many who never will.”
Lessons learned? Jenny advises, “Be an example for your child — ask yourself ‘What would I want them to do if I wasn’t around to help them?’ ”
- Quiet the voice in your head that second guesses your instincts, your allergist, your family action plan.
- Shut out unsolicited opinions from others about your crisis management competence and judgement.
- Follow your emergency care plan. TO-THE-LETTER.
- Act fast. Act without hesitation.
“Your {gut} knows what to do. The trick is getting your head to shut up so you can hear.” —Louise Smith
Sometimes we get caught up in the momentum of our own lives. We are in such a rush — to move forward, to cross off another to-do on our endless list, to address the loudest, most urgent need — that we overlook important details in our here and now.
Jenny’s story is a wake-up call to slow down, pay attention to details, silence the voice in your head and follow your allergist’s emergency instructions to the letter. Save the second guessing for later, much later, because seconds count.
Jenny now serves on the FARE Board of National Ambassadors — a prestigious group of corporate, foundation and civic leaders who help FARE develop strategic relationships with leaders in government, business, trade & medical associations and think tank institutions. She also serves as Co-Chair of Food Allergy Connecticut – a FARE-recognized support group — with Jocelyn Walls.
Food Allergy Connecticut is committed to connecting and supporting local families managing complicated food allergies through educational speakers, support coffees and community events that include and empower the whole family. For more information or to be added to their mailing list please email Jenny and Jocelyn at ctfoodallergy@gmail.com.
Jenny makes a difference in the food allergy community — locally and now nationally — by lending a shoulder, lending an ear, sharing her knowledge and educating families with food allergies.
Thank you, Jenny, for all you do on behalf of the food allergy community!
Recommended Resources
Here are some resources from FARE and FAACT that can help you recognize the signs of an anaphylactic reaction and how to respond:
- Symptoms and Treating Allergic Reactions from FARE
- Signs, Symptoms and Treating Anaphylaxis from FAACT
The Allergy Force Changemaker Series shines a light on movers and shakers in the food allergy community who drive change and bring positivity to the space for the benefit of the entire community. |
|
Image Credit: Thank you to Malvestida Magazine on Unsplash for use of the image