Avoiding Anaphylaxis: 19 Years of Rehearsing Pays Off
Allergy Force guest author DA Graham writes, "Many of us know how hard it is to hand the care of our allergic children over to strangers. And much of our diligent, life-preserving care is referred to as “helicopter parenting” by outsiders who don't walk in our shoes, who don't understand what's at stake with an allergic lifestyle."
Read her from-the-heart story about empowering her son with a severe dairy allergy over the years. Find out how a recent incident reassured her that her young adult son is extremely well-prepared to manage his food allergy, even under adversity...
As allergy parents, we all try hard to avoid the hospital. My family has spent the last 19 years doing our best to avoid the place, and training our son to cope with his allergy. We have trained our babysitters, friends, and family (that were interested) in how to administer epinephrine and how to recognize signs of anaphylaxis. It has been a family project to stay educated on the latest in research and resources. We are a team, and we all live dairy free to accommodate our son’s allergy in the smoothest way possible to ensure he doesn’t feel he’s missing anything.
Being severely dairy-allergic is part of his identity, but it does not fully define him. The fact is that much of life has to be altered, in some way, to keep him safe and healthy. There have been a few close calls and heart-pounding medical experiences.
When Logan was baby, he sported the cutest chubby cheeks and blue eyes that were 'grandma magnets' — they drew older women to him who, for some reason, always seemed to want to feed him. Some of them would actually take him from my arms before I found the courage to say "No!" Firmly. Politely. Once, one well-intentioned woman even took him home from church (without my knowledge or permission) to play with a new kitten. Fortunately, I found out in time and dashed to her house before she gave him anything to eat or drink. She didn't know he was severely allergic to dairy — a close call that I still recall like it happened yesterday.
Over the years, we purchased and made bags, clothing, signage, and safety bracelets that warned people about his severe allergy and warned them not to feed him. When he was a toddler, we would play “doctor” with a play medical kit, pretending an anaphylaxis emergency, complete with a toy 'shot'. We tried to normalize our emergency response to anaphylaxis and make it automatic.
People without food allergies have no idea how challenging (and stressful) it is to constantly be on the alert for What and Who is near your allergic child. A good deal of your attention is always on your allergic child. It's the family's priority. Logan's older brother Jackson has always been there for him, as well, actively looking out for him.
Logan has been proactive about learning about his allergy — learning to read labels, learning to talk with friends and family about it. We have always encouraged him to advocate for himself.
This self-advocacy transitioned over time from parent-assisted via play, special books, and discussions to almost 100% self-advocacy where he does most of the label reading, some cooking, and all of the communicating with people who will prepare/serve him food. He decides whether he feels safe in various situations, what resources he can use to help himself, and is extremely cautious (generally unwilling) about taking risks. Logan is confident about how to stay safe and is using his life experiences to help others navigating allergic living as a weekly podcaster, The Dairy Free Dude. He also served as a FARE Teen Advisory Group member.
Recently we found out that he needed some involved out-patient surgery.
A nurse called the day before the surgery to discuss his medical history and his allergy. At the hospital, his patient chart was clearly marked for a severe dairy allergy (all components) and the nursing staff was up-to-speed on all of his medical details. He was listened to, a large red band marked "ALLERGY" was placed on his IV arm, and his care team even brought us a couple food options for the recovery room so we could pre-read the ingredients and approve exactly what he would eat following the procedure. All good!
After the surgery, I was headed to the recovery room to see him. As I rounded the corner past the curtain I saw a nurse handing him a drink and heard him say “What is this? What is in it?” Even though he was still sedated — and more dopey than fully aware — his years of training kicked in. I wanted to whoop out loud! I immediately told him I was SO proud of him.
Logan doesn’t even remember the incident now, but it was the result of 19 years of rehearsing strategies to avoid anaphylaxis. It did my heart so much good!
Many of us know how hard it is to hand the care of our allergic children over to strangers. And much of our diligent, life-preserving care is referred to as “helicopter parenting” by outsiders who don't walk in our shoes, who don't understand what's at stake with an allergic lifestyle.
But, our efforts to train our children to cope with their life threatening allergy ARE effective. Don’t give up. It’s a process and a way to fight back!
You can hear humorous advice from Logan on the Dairy Free Dude podcast weekly on Fridays. Listen on Apple podcast, Amazon music, Spotify and other platforms, or directly from his website. Follow him at @DairyFree Dude on Instagram.
About the Author: Meet DA Graham — mother for 23 years, home educator for 18 years, food allergy mom, and a North Idaho artist and poet whose bright, expressive art celebrates the common life and the little details that make life vibrant. Her passion and hope is to encourage people to pause and appreciate the amazing details in life that are so easily lost in our busy world. She hopes you'll peruse her gallery and be inspired to create something beautiful and see the beauty of God at work in your life.
Images: Courtesy of d. a. graham