Finding out your children have a health condition can turn any parent's world upside down. Knowing that it's potentially life threatening can be devastating.
Luckily for brothers Ben and Andrew, their mother, Kristen Kauke, not only was relentless in addressing both her sons' potentially fatal food allergies, but she also wrote a book about this often misunderstood topic.
"Growing Up Ben: Living a Full Life With Food Allergies" is Kauke's first-person account of her family's process, from guilt, anxiety and restrictive living all the way through to equipping her children to survive in the world.
"The character of Ben in the book is actually a combination of both my boys. Both have fatal food allergies," said Kauke, a licensed clinical social worker who lives and works in St. Charles.
Ben, 11, experiences anaphylaxis symptoms to peanut, egg and soy, while Andrew, 8, experiences anaphylaxis symptoms to milk, peanut, egg and soy.
"We first discovered (Ben's) allergies at age 1 when he had a lick of peanut butter and erupted into hives, swelling and coughing. After immediate treatment for his symptoms in the ER, we followed up with a pediatric allergist who diagnosed his food allergies," she said.
Andrew actually began experiencing symptoms as a nursing infant, which may have contributed to Kauke's opening in her book: "I'm already a bad mom. I poisoned you. Okay, that's not entirely true. But it certainly feels that way."
Of course the onset of Andrew's symptoms was not his mother's fault, but it must have felt that way when "he actually began experiencing allergic symptoms while I was nursing him as an infant," she said. "Even then, he reacted with terrible eczema and GI symptoms in response to the dairy or egg I had consumed, that became present in my breast milk."
As she and her husband Brian had already experienced a history of food allergies with their older son, they quickly took him to the allergist and made the necessary life changes.
"The time following diagnosis can feel overwhelming as a parent. Your mind becomes filled with anxiety, you become engrossed in reading labels, and grocery shopping takes twice as long, for a while. And we encountered struggles with family accepting and accommodating the boys' diagnoses," Kauke said.
This book, Kauke's third, details these challenges and ways of coping. The crux of her advice is to get educated, adhere to your allergy action plan, find a supportive community and manage your own anxiety.
Kauke hopes this book "sparks discussion that brings about understanding and acceptance. Additionally, in my opinion, food allergies remain 'the bastard son' of chronic childhood disease," she said. "Despite strides in awareness, persistence of unaccommodating attitudes, ignorant mindsets and discomfort with truth still accompany food allergies."
In addition to her own experiences, "Growing Up Ben" was inspired by discussions with teens and parents at the Food Allergy Teen Summit in Washington, D.C., last November, where Kauke presented on coping with the emotional aspects of food allergies as well as managing conflicts among families and friends that often coexist with this health challenge.
She also interviewed Ren Henry, 18, of Geneva, for a college-bound perspective. Henry lives with a dairy allergy, and has found ways to successfully navigate the teen world.
From infancy through high school, Kauke walks her readers through the most challenging parts of having children with food allergies. She also shares what has worked for her sons and her family.
"My philosophy is to eat healthy and experiment often with new recipes that are safe alternatives to typical favorites. We also continue balancing making smart decisions when it comes to any event that involves food, which is quite a lot, if you think about it: lunchrooms, holidays, even snacks at baseball," she said. "For the hundreds of children and parents that have been bullied, teased, harassed, and for the thousands of those whose quality of life has been impacted by living with food allergies, I persisted with this project in hope that continued education and awareness will bring about consideration for these challenges."
"Growing Up Ben" is available on Amazon.com. You can also read more about Kauke and her books at handlingemotions.com.
Kauke has presented at several Food Allergy and Anaphylaxis Network conferences across the country, as well as the November 2012 Teen Summit, on the topics of coping with anxiety and resolving conflict in to living with life threatening food allergies. She has contributed articles to Food Allergy News regarding easing fears after an allergic reaction and prepping for preschool, as well as to Allergic Living, on saving your marriage from food allergy stress.