By Linda Coss – My story began 1991…I sat nervously in the chair in front of the doctor’s desk, trying desperately to calm my wailing toddler. Jason was only 18 months old, but he had already developed such a dread of doctors and doctors’ offices and tests and shots that he became hysterical at the mere sight of a waiting room. He had vomited when we entered the examination room. And now he was crying uncontrollably.
“Mrs. Coss,” I heard the doctor say, “This is one of the three worst sets of test results that I have seen in my twenty years of practice.”
And so began my journey into the world of food allergies.
Through trial and error I had already discovered that Jason reacted to milk products, eggs and nuts. Even in my naïve “first-time mother” state, I knew that something was wrong when a child spontaneously broke out in hives during lunch. But I had no inkling of the depth of the now blood test-confirmed problem.
“Based on these test results,” continued the doctor, “I believe Jason is at high risk for anaphylaxis.”
“Anaphy-what?” I thought.
“If Jason were to consume an allergen,” he explained, “even a tiny amount of allergen, he could go into anaphylactic shock. This is a very serious condition which can rapidly lead to death – within minutes or hours.”
“WHAT???” I thought, holding Jason just a little closer, “did he say DEATH???”
I don’t clearly remember the rest of the conversation. I don’t think I truly heard it.
By the time the appointment ended I had learned that there was no cure for food allergies and that the only “treatment” was a “strict avoidance diet.” I left the office armed with a syringe full of epinephrine and instructions on how to use it if Jason had an allergic reaction, a long list of ingredients to avoid (who would have thought that “milk” could be called so many different things?), a collection of informational pamphlets, contact information for a dietician, a whimpering toddler (exhaustion was finally setting in), and an unshakable urge to scream and cry hysterically.
It didn’t take long – perhaps a few weeks – for me to fully understand Jason’s diagnosis, and to understand that screaming and crying hysterically probably was an appropriate response.
From the food allergy perspective, Jason was an ultra-sensitive child. I quickly discovered that Jason was so exquisitely sensitive that he would develop hives around his mouth within 30 seconds of consuming a tiny bite of a food that was merely produced on the same machinery as another product that contained a tiny amount of an allergen!
This was ridiculous. All I could think was that if exposure to a practically microscopic quantity of allergen produced an immediate (although minor) reaction, what would happen if he actually had a mouthful of milk or a bite of peanut butter? Anaphylaxis – and possible death – was a very real possibility.
This was when the depth of the problem truly began to set in. What did it mean to parent a toddler who was at risk for literally dropping dead if he consumed a tiny amount of the wrong food? It meant reading the ingredient panel of every single food item that I purchased, every time I purchased it. For me it also meant cooking everything from scratch and avoiding restaurants, because back then I wasn’t able to obtain reliable ingredient or cross-contamination information from either food manufacturers or restaurant managers.
The more time went on, the more issues I discovered. Parenting this toddler meant never – and I mean never – allowing him to be more than an arm’s distance away from me when we were not at home. As a toddler, he naturally had an innate need to grab everything in sight and shove it into his mouth. Social situations were a minefield. We encountered small children covered with cake and ice cream, dishes of nuts and colorful candies, tables full of forbidden food, relatives with food residue on their hands or lips wanting to touch or kiss Jason, and well-meaning people wanting to give the adorable little boy with the big brown eyes a bite of something delicious (“just one bite – a little bite can’t possibly hurt anything”).
Eventually, of course, I adjusted. I became adept at reading labels, I was a seasoned pro at picnic packing, I successfully convinced everyone in Jason’s life that I wasn’t exaggerating about the whole thing (Deadly food allergies? Preposterous! Who ever heard of such an absurdity?), I saved a lot of money by not eating out, and life went on – although in a somewhat paranoid, always on-alert kind of a way.
When Jason was 2-1/2 my second son was born. Knowing that this was in our gene pool, I took every possible precaution to try to prevent Kevin from developing food allergies. All of my efforts paid off – eventually. By the age of five, Kevin could eat anything. However, when he was around one he had a reaction and developed a measurable allergy (he went from “0” to the top-of-the-scale “4” on a “skin prick test”) after consuming just a half a cup of milk and one egg! So it was back to my familiar mode of parenting: Staying within an arms’ reach, carrying extra emergency medication, educating everyone in Kevin’s life that he had this condition, too.
When Jason was 4 years old I started a local food allergy support group that has been a saving grace in my life ever since. Over the years our little group has hashed out solutions to most of the issues addressed in this book.
By the time the boys were a little older I became fed up with the lack of decent food allergy cookbooks that were then on the market. I decided to develop recipes and write my own. In December 2000 I published “What’s to Eat? The Milk-Free, Egg-Free, Nut-Free Food Allergy Cookbook.” I am extremely proud of the success of this book, and I am absolutely thrilled that my work has brought delicious food into the lives of thousands of families who thought their children were going to be limited to unappealing “special diet” fare.
In January 2002, at the age of 11-1/2, Jason outgrew his dairy allergy. To celebrate I threw the “Dairy Fest” party that I had been fantasizing about for years. We feasted on pizza, ice cream, cheese and crackers, and dairy-filled “party foods” of all kinds. The party invitation featured a picture of Jason with a piece of pizza dangling out of his smiling face. The caption read, “Miracles Happen.”
In December 2002 I had a very long telephone conversation with a woman in Northern California who had called to ask advice about starting a support group in her area. Our conversation flowed from one food allergy-related topic to another, and she asked for input regarding how to handle a wide range of issues. It was actually her off-hand comment at the end of our conversation that I “ought to write a book with all this advice” that was the trigger for this entire project!
For many years now, one of my personal goals has been to make a positive difference in the lives of others and to do my part to help “heal the world.” In this book I have provided practical advice on how to handle the wide variety of situations that face parents of food-allergic children. I sincerely hope that this advice helps you to keep your precious child safe and healthy, and that it makes your life in the food allergy world a little easier.
This story has been reprinted with permission from the introduction to “How To Manage Your Child’s Life-Threatening Food Allergies: Practical Tips For Everyday Life,” by Linda Marienhoff Coss (available at www.FoodAllergyBooks.com)