Every day Madeline faces a threat that many of us will never know. Can you imagine – ingesting food that could make you sick, or even kill you? She does. She knows that threat. She trusts adults she knows to check her food labels for what she considers “poison.” Daily we come across food that is not okay for her to eat – it contains peanuts or peanut butter, it's "manufactured on the same equipment or in a facility as peanuts," or it "may contain" the offender. Allergen statements thankfully labeled for her protection, in reality close calls when only the one that informs us of the actual ingredient of peanuts must be listed. Seriously – close calls, especially as her world and her life become larger, we must have faith, trust, and have confidence in the world around us.
Yet, somehow, my baby girl is amazingly courageous. She’s also outgoing, fun-loving, friendly, bold, even a bit daring. Maddy is clever and loves school - even in the summer she misses math! She has so many friends and always finds the best in people, even the bullies! She loves her BFF’s – Conley and Aubrey and will tell you she ‘hearts’ all of our friends and family and is always asking to get together with this family or that friend, go to Grandma Tyna’s house or just down the road to Grandma, Nanny & Papa’s house. She has an affinity for roller coasters, swimming pools, lakes, and puppy dogs. She has even recently grown to love fishing and got an awesome new tackle box from her aunt, uncle & cousins for her birthday. She has two dogs and two cats that she plays with regularly even if the cats make her itchy. Best of all, Maddy would do anything for any one of you. She is loving, giving and has the biggest heart that reaches well beyond her little body.
Maybe Maddy’s immense heart is why it seems the ‘bubble’ we do put her in to keep her safe has seemed colossal. Maybe, just maybe, the reality is that the networks of support that care for us and Maddy have been amazing people that have been touched by Maddy’s heart, and ours. Our support system, our friends, family, and church group have been there for us through thick and thin – and in the last few years that has been tremendous! We've strived for Maddy to have a normal childhood and life even with a peanut allergy. We have learned that we must remain positive, involved, and one step ahead to advocate & educate – ourselves and others as well as we can.
The threat of anaphylaxis killing our child, though, is what led us to do something more. It led us to Chad Mayer, DO, of the Comprehensive Food Allergy Clinic in West Bloomfield, Michigan. In my quest for education, I’d read about possible treatments, therapies, and the most current research all along. I’d joined the The Food Allergy & Anaphylaxis Network, which has the latest & greatest information in food allergy information. I’d checked out the site numerous times, joined Facebook groups, and did my own research on food allergies. Over the years, I armed myself with information – knowledge is power!
When the possibility of desensitization, or Oral Immunotherapy, came to town, we had an appointment with an allergist in our area that had come very highly recommended by a number of people. I spoke with him for his opinion. He didn’t recommended OIT, stating the long term benefits were not yet known, referencing an article (which I’d read), by Dr. Sampson (Hugh A Sampson, MD, Mount Sinai School of Medicine; Jaffe Food Allergy Institute; http://www.asthmaallergieschildren.com/2012/05/11/oral-immunotherapy-for-food-allergy-not-ready-for-prime-time/) that suggests desensitization is just not ready for the masses. So I went home, somewhat deflated, and listened to our new allergist, whom I’d just met. I put aside all the research I’d done, all the articles I’d read, the FB groups I’d “met” in the process of completing OIT with their children - children with peanut allergies who had anaphylactic reactions when they walked into rooms with peanuts now eating eight peanuts a day. I convinced myself this was the best, that we’d do something when there was a more widely available “cure,” even though that meant more years of 504 agreements at school, panic at the thought of school parties, birthday parties and explanations & education to parents about the allergy. Granted we have been lucky in more ways than one with Maddy’s allergy, but as school was approaching I knew another year meant more challenges. It was for the best, right?
At the end of June, we were packing for a baseball game. Imagine my anxiety. I had already called the ballpark and they assured me as much as they could about what she could eat, but of course the park food service manager also added, “We can’t guarantee she will be 100% safe. We do serve peanuts on grounds. You need to exercise extreme caution.” Of course, but we had set out to not make her live in a bubble, to not be anxious about daily life, to cautiously approach activities rather than avoid them, so we were going. Earlier that same day though, her dad and I had been speaking about letting her grandparents take her on vacation for a few days. My anxiety piqued – vacation food was dining out, ice cream - spontaneous eating experiences. I felt the same way when my own mother wanted her for a few days. As she gets older, I’d realized - we have kept her safe, she has gotten comfortable in taking risks and she wants to live life unrestricted - why should I get in her way? So, that day, we made a decision to make a consultation appointment for OIT. Again, our entire family and our friends were supportive, even excited. Weight already began to lift from my shoulders.
Maddy’s excitement didn’t come, however, until we spoke with Dr. Mayer. Jason and Maddy both got the run-down of OIT when we visited the office in July and I learned that Dr. Mayer has the exact same protocol as Dr. Wasserman, a leader in OIT in Dallas. Again, I am no expert, but I’d done much research, followed many parents with children in different programs and had really watched this work! Dr. Mayer spoke with us directly about many different happenings in food allergy research and made us feel at ease with the process. It was exciting to see how she would start, the amount of peanut protein (dust really) and how many peanuts she will eat in the office (24) to “graduate” the program to begin the maintenance process at home. Also extremely encouraging to us was the fact that Dr. Mayer is in no hurry. He let us know that his particular protocol is particularly conservative, so if/when she reacts, her dosages will be adjusted accordingly. This was going to happen!
Maddy was nervous even as Dr. Mayer walked in, even when he spoke to her. We had tried telling her about the process; her grandma spoke to her about the process. She humored us as we went & said she’d listen but didn’t want to do it. We made the appointment for the first day, Rush Day, the day that peanuts are first introduced into the peanut allergic child’s system. As we headed out the door into the bright sunlight of the day, Jason said to her, “Well, Maddy what do you think?” She turned around at him and smiled her gorgeous smile and put her thumb in the air then said, “No, I mean… two thumbs up.” In her book, Dr. Mayer and desensitization were in!