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Bringing Hope, Love, and Empathy into the New Year for Those Living with Food Allergies

January 4, 2021  |  Adolescents, Adults, Advocacy, Allergies, Allergy, Allergy-Awareness, Anaphylaxis, Anaphylaxis-Action-Plan, Asthma, Awareness, Behavioral-Health, Blog, Board-certified-allergist, Bullying, Caregivers, Children, Civil-Rights, Compassion, Dining-Out, Education, EGID, Emotions, Empathy, EoE, eosinophil, Epinephrine, FAACT, Family, Feelings, Food, Food-Allergies, Food-Allergy, Food-allergy-blog, Friends, Friendship, Grandparent, Healthcare, Holiday, Holidays, Know-The-FAACTs, Label, Medic-Alert, Medical, Medication, Milk, Mom, Mother, Parent, Peanut, Pediatrician, Preparedness, Readlabels, Recipes, School, Sesame, Support, Support-Group, Teens, Tips, Travel, Traveling, TreeNuts, Wheat
EGH

by Eleanor Garrow-Holding, FAACT President & CEO

December 5th, 2004 is a day I will never forget. On this day 17 years ago, my dad was laid to rest; and 16 years ago, 19-month-old Thomas had his first anaphylactic reaction to pecans at a family birthday party. It was the scariest day of my life (I am sure many can relate). I thought I was going to lose Thomas, too, while 5 months pregnant with Anne. No parent should lose a child; sadly, through the years, I know too many that have. Thomas was not in my eye-site and onto the food table. After ONE bite of an English toffee bar with crushed pecans, he went into anaphylaxis after 30 seconds. Hives, coughing, watering eyes. My cousin was the hospital administrator. She lived 2 miles from the hospital. She called ahead and told the staff what Thomas had eaten and his symptoms while my mom drove us to the hospital. Upon arrival, the ED team was waiting outside for us. It was SEVEN minutes from that ONE bite to the ED entrance. Thomas was completely unrecognizable to me. Hives from head to toe; eyes now swollen shut; lips swollen; coughing; gasping for air. The ED doctor took him from my arms. They administered three doses of epinephrine, antihistamine, prednisone; initiated heart and lung monitors; and oxygen per mask. It was about three hours later that Thomas started to look himself. They admitted him to the Peds Unit overnight for observation to rule out a possible biphasic reaction. All the while, I had many questions and worries going through my head. What is happening? We have no family history of food allergy! Is Anne going to have food allergies? I knew no one with food allergies! I knew nothing about food allergies despite my healthcare background! I was beyond scared and felt so alone!

Thankfully, Thomas had a restful night; I did not. We were discharged the next day and went to our pediatrician for a prescription of epinephrine auto-injectors. Next, I called Lurie Children’s to schedule an appointment for testing and diagnosis. After skin and blood tests, Thomas tested positive to all tree nuts, peanut, and sesame. My world was even more rocked! Although, I learned that day that I was NOT alone! There were many support groups in Chicago and the suburbs, but there were none in our suburb. So, from December 5, 2004 on, I started educating myself and my family on everything about food allergy and anaphylaxis. I resigned from my job because I did not trust anyone to care for Thomas except his Dad, my Mom, or me. I traveled to attend support group meetings and meet other parents with whom I could identify. I met amazing parents along the way who mentored me; educated me; supported me, etc. My mom, a nurse, was one of them. She was and still is our #1 supporter! When I was ready, I started a support group in the county where I lived because there was not a group, POCHA of Will County (Parents of Children Having Allergies). Families needed support as times were different then. No online groups. Meetings were in person with guest speakers. Educational materials from various organizations; samples from allergen-friendly food companies; epinephrine trainers were made available for the group members. Parents loved the in-person meetings and socialization. It was great meeting other families who share the same life experiences.

At age 3, Thomas was diagnosed with Eosinophilic Esophagitis (EoE) and asthma. After a two-year elimination process of certain foods, his triggers were milk and wheat. Another new navigation for us as milk and wheat are in so many foods. Adding asthma meds was another new path for us. We continued to educate and advocate for ourselves, and we managed!

I found my passion the day Thomas had his first reaction. I knew I would not let his food allergies define him or hold us back from living life. I was not going to let fear take over; nor was I going to allow anyone to instill fear in us! Living with food allergies IS manageable. It is all about the education! I taught Thomas, now 17, how to advocate for himself at a young age, and he has always been his best advocate! I am SO proud of him! Anne learned at an early age to be an advocate, as well, and I am so proud of her. Living with food allergies is all they have ever known. Siblings are affected, as is the entire family. It is especially important to not lose sight of your family.

We started to dine out. We started to travel again. We flew, even internationally. Thomas went to school. We had hurdles to jump over the years. Believe me when I say hurdles, but we made it work. Over the years, we have gone through oral food challenges, 21 endoscopies and food reintroductions (d/t EoE, but is now in remission), and skin/blood tests. Just like many of you. We have come a long way over the years. Thomas is in remission for EoE, which is rare, but now has milk and wheat back in his diet. He outgrew peanut, sesame, and almond. We still avoid all tree nuts. There is ALWAYS HOPE! ALWAYS!

PLEASE KNOW, whether you are newly diagnosed or still trying to manage and navigate, the support and education are there for you and your family. The inspiration and empowerment are there for you. It is OK to be scared. It is OK to not be OK. It is OK to cry. Tears are your strength, not your weakness! It is all normal. You’ve got this! YOUR voice always matters! IF you do feel alone, don’t have anyone to talk to, are feeling frustrated, or need support...please call or email us! FAACT IS HERE FOR YOU! Always remember, we are all in this TOGETHER! ALWAYS be kind to one another!

I thank God every day for my mom’s support and advocacy for Thomas and for others in the food allergy community. I thank God and my dad every day because they were watching over Thomas on December 5th. May they always keep watching over all of us!

I love you to the moon and back, Thomas and Anne, and am so proud of the young man and young woman you are becoming! Keep living your dreams!

We wish everyone a safe, healthy, and Happy New Year!