Personal Connections to Food Allergies and Anaphylaxis
President & Chief Executive Officer
In 2004, when my son Thomas was 19 months old, he had his first anaphylactic reaction to pecans at a family birthday party. Just one bite and about 30 seconds is all it took for Thomas to have an anaphylactic reaction. He had hives from head to toe, swollen lips, eyes swollen shut, coughing, and shortness of breath. There were no antihistamines or epinephrine in the house. My mother is a nurse and I worked in hospital management. We knew immediately that Thomas was having an allergic reaction.
We drove Thomas straight to the emergency room in the suburban Chicago town we were visiting. It was seven minutes from that one bite to the ER entrance, and Thomas was unrecognizable to me. He was so swollen and disfigured that I could not tell he was my son. The ER team was waiting outside for us as we pulled up, and they immediately took Thomas from my arms. They administered three doses of epinephrine, antihistamines, prednisone, and oxygen. He was hooked up to heart and lung machines. It was almost three hours before Thomas started to look himself again. He was admitted to the Pediatric Unit for observation through the night and to make sure he didn’t have a biphasic reaction.
We followed up with our pediatrician the next afternoon after we were discharged from the hospital, then we scheduled an appointment with a board-certified allergist at Children’s Memorial (now Lurie Children’s) in Chicago for testing and diagnosis. Thomas was diagnosed with food allergies to all tree nuts, peanut, and sesame.
At the time, I had no knowledge about food allergies or anaphylaxis, nor did I ever know anyone with food allergies. I was determined to learn everything I could to keep Thomas safe and to educate myself, my family, and our friends. I started a support group in the suburb where we lived and provided education and outreach, advocated for state legislation for School Food Allergy Management Guidelines and Insurance Coverage for Elemental Formulas, and raised funds for food allergy and anaphylaxis education and research.
When Thomas turned three, he was diagnosed with asthma and environmental allergies. When he turned four, he was diagnosed with Eosinophilic Esophagitis (EoE) triggered by milk and wheat. Thomas later developed an IgE-mediated food allergy to wheat after reintroducing it back into his diet due to the EoE. I knew I wanted to do more on the national level, and in 2009 I was offered the Vice President of Education position at the Food Allergy & Anaphylaxis Network.
In January 2013, I realized my journey to educate, advocate, and raise awareness was not complete and formed the Food Allergy & Anaphylaxis Connection Team (FAACT). FAACT is for every person affected by food allergies and anaphylaxis because we are all connected, and we all work together as a team to educate and advocate. My goal is for FAACT to provide you with everything you need for your family to be healthy and safe.
Amelia G. Smith, JD
Vice President of Civil Rights Advocacy
Within hours of my son being born, he was projectile vomiting. The first five months of his life consisted of a string of trips to the pediatrician’s office with diagnoses of reflux and failure to thrive and prescriptions for every possible combination of every reflux medication on the market. At six months old, Robert saw a pediatric gastroenterologist at Le Bonheur Children’s Hospital in Memphis, Tennessee who, after hearing Robert’s medical history, took one look at my son and his weeping eczema and suspected food allergies were at the root of Robert’s condition. I was told that in nursing my exclusively-breastfed baby, there was a possibility he was allergic to trace amounts of food allergens in my breast milk. We left that day with a referral to a board-certified allergist, a prescription for elemental formula, and instructions to eliminate the top eight food allergens from my diet before nursing my baby again. Once we were finally able to see the allergist, Robert was skin-prick tested for the top eight allergens. The wheal from the egg scratch was so large that the other results were unreadable. Through RAST testing, Robert was also diagnosed with peanut, tree nut, and shellfish allergies. My world was turned upside down with this diagnosis. At that time, the only thing I knew about food allergies was their life-threatening nature. I became consumed with educating myself about food allergies. Over the next few months I learned that my lactation consultant’s child had food allergies as did one of my daughter’s classmates. Fast friendships and a food allergy support and education organization, Food Allergic Children’s Education (FACE IT), were born. As the founder of FACE IT, I became active as an advocate at the local and national level. Robert had his first anaphylactic reaction at the age of two while at his day school, where I had just trained the staff two days prior. After this reaction, it became obvious that special accommodations were going to have to be put into place in try to prevent future reactions. As Robert made his way through a private, church-controlled day school and prepared to enter public school, I faced many of the same challenges other food allergy family face making sure that my child was appropriately accommodated to ensure that he was safe once I dropped him off every morning. My goal at FAACT is to help educate families regarding the different options and possible accommodations available to them in such settings.
Betsy Rinehart, MSN, RN, BSN
Vice President of Education & Outreach
My son Edward was born in 2006 and soon developed moderate eczema that doctors said was just the result of delicate newborn skin. Edward was a happy baby but had "silent reflux" – a lot of regurgitation but no obvious signs of discomfort. Doctors assured us that as Edward grew, his ailments would decrease.
When Edward was 13 months old, I gave him some of my dinner – a pesto pasta salad that I was unaware contained walnuts. He immediately started fussing, which I dismissed. When I finally looked over at him, Edward was covered in hives everywhere he had contact with the pesto pasta salad. With my background in healthcare, I immediately knew he was having an allergic reaction. I panicked, called a neighbor for help, and thankfully, Edward's reaction did not progress beyond the skin symptoms. Subsequent testing revealed Edward to be allergic to peanuts and tree nuts.
We visited a few doctors in Dallas until we found an allergist with whom we felt comfortable, and we continued to test Edward for further allergies. We navigated schools as Edward started preschool in Dallas and then continued after a move to Kentucky. Through our moves, I was exposed to vast differences in how allergists educated us about Edward's allergies. In 2012, after we moved to Colorado, Edward was further diagnosed with allergy to sesame seeds. Together with our wonderful team of allergists, we have been able to hold "supervised feedings" at Children's Hospital in Denver, during which we have proven that Edward is not allergic to the wide variety of tree nuts to which we once thought he was allergic.
I have been able to understand the medical aspects of food allergies, but I have found it much harder to prepare for the emotional toll that being an advocate for a child with food allergies can take. While I have found a wonderful network of committed professionals here in Colorado on our Poudre School District Food Allergy Task Force, changes still need to be made in many school districts. We consider ourselves lucky that our school is taking steps to help caregivers and students, but we still have a long way to go before children with food allergies can be accepted and cared for in the safest way possible. Together with FAACT, I hope to be able to bring to more people an awareness of the severity of food allergies and the necessity of proper procedures to keep known – as well as undiagnosed – allergic students safe.
Director of Support Group Development
I started my journey with food allergies when my son, Evan, had his first reaction at the age of 12 months. At the time, we didn’t understand food allergies or know what was going on. Evan had one little lick of some peanut butter ice cream and immediately developed a rash around his mouth. I reported this to our pediatrician, and he advised us to hold off on giving our son peanut butter until he was three or four years old.
Throughout the next couple of years Evan continued to have odd occurrences such as random projectile vomit and swollen eyes. All of these incidents were dismissed by our pediatrician as being “nothing,” and this left my family to just speculate that it was some type of illness or bug bites causing the swollen eyes. When Evan was two and a half years old, we relocated to Michigan. We had friends over to our new place for the first time. I decided to make peanut butter and jelly sandwiches for his playmates and just a jelly sandwich for Evan. So I made everyone’s sandwiches and then I rinsed and wiped clean the knife to cut Evan’s sandwich in half. Shortly after lunch, his eye was swollen so badly that he reminded me of the character in the movie “Rocky.” I flushed it with water and gave him Benadryl. I couldn’t figure out why this was happening again. Thankfully, the reaction went away. Around that same time, we were grocery shopping and Evan was given a peanut butter cookie from the bakery counter. He took a tiny bite, spit it out, and complained he didn’t like it. I then asked the bakery for a plain sugar cookie instead. Evan’s mood quickly declined and he became very cranky and agitated. I then took him into the bathroom and he started crying and then vomited everywhere. At the time, I thought he was just getting sick.
In March 2011, my son went in for testing at his allergist’s office. He was tested for peanut, tree nuts, pet allergies, and environmental allergies. My son was diagnosed with environmental allergies and severe food allergies to peanuts and tree nuts. This was a wake-up call for our family, and I immediately learned as much as I could about food allergies. Looking back now, I feel so ignorant, but I really was when it came to food allergies. If people around us would have been more knowledgeable about food allergies, we could have prevented so many close calls with my son’s life.
As FAACT’s Director of Support Group Development, I plan to work on support group development because education and support are so important for food-allergic families. I want to continue to raise awareness and spread food allergy education to everyone around us.
Stacey Stratton, M.Ed.
I was there the day my sister first gave my nephew a peanut butter cracker when he was around 18 months old. He was very small on the growth chart, and the pediatrician felt the protein in peanut butter would help him increase in weight.
Soon after he ate the cracker, my sister had left the room and I continued sitting there by my nephew. He had his back to me, but he kept rubbing his face and I could tell something was causing him distress. I went to pick him up, and he had hives all over his face. I yelled for my sister, and when she saw him, she quickly grabbed the phone. The nurse kept asking her questions, and since I was holding him, she would then ask them to me. Then she asked, “Are his lips getting bigger?”
I knew I needed to stay calm for her. This was a situation where it would be easy to start to panic. Yes, I said, they were starting to get bigger. The ambulance was called and within minutes you could hear the sirens getting closer.
Before that day, neither one of us had any knowledge of food allergies. After I started learning about food allergies and also seeing the struggles that parents of food-allergic children went through, I knew I wanted to help. My goal is to help spread the word about FAACT and the services they offer to support food allergy families and provide food allergy education.