At the time our story began, I had a sweet two-year-old little girl and a newborn baby boy we named Noah. Two beautiful and healthy children and my worries involved time-outs and sleep routines, your typical mom-life challenges. I had never known anyone with food allergies. We had no one in our immediate family with food allergies. Our daughter, Hannah, had been a happy, eat-everything-and-anything child when it came to food. We were oblivious, clueless, and naive. Isn’t this where we all begin?
Noah was a perfect baby. Literally. Our daughter had been a very demanding, fussy, and all-around difficult personality as a little one, but Noah was the exact opposite. We named him Noah because Noah means rest. We needed some rest in our home after our spunky, spit-fire little girl. We prayed Noah would in fact bring us rest, and he did. In the hospital he never made a peep. We kept asking the nurses if he was okay because he wasn’t fussing. They sweetly assured us that yes, he was just fine. He was the happiest, easiest baby. He slept well, nursed well. He cooed and smiled, and rarely cried. Life was dreamy.
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Noah came from a healthy pregnancy. I ate all foods while pregnant with Noah, including the top food allergens. I was not on antibiotics. He was a vaginal delivery and did not receive antibiotics during my delivery process. He was a healthy baby who did not receive antibiotic therapy for any illness. However, looking back, I can see some warning signs common to those with kids who have food allergies. He had terrible skin as a baby. His baby acne slowly turned into severe eczema. The eczema spread to other parts of his body including behind his knees and patches on his legs, arms, and torso. Through the breakdown in his skin, he was exposed to many common food allergens. We were a home that ate all allergens on a regular basis. We touched him with our peanut butter-soiled hands. I drank milk with my tea most mornings and would kiss his “owies” with my dairy-laden lips.
Was this the start of his allergies? We will never know, but perhaps. Perhaps his immune system was reacting to the allergens through the open wounds on his skin, the largest organ of his body. Perhaps his immune system began attacking what should have been a non-invader (milk, peanut, etc) as an invader.
I kept on nursing him and eating a diet full of all foods for the first four months of his life. He grew well and was a content baby.
The recommendations in 2011 were to start your baby on rice or infant cereal around four months of age. We followed the doctor’s instructions and started rice cereal when Noah was closer to five months old. At his first feeding, Noah had his first food reaction.
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We were your typical parents, armed with a camera and ready to feed him. He took a few first bites and quickly I put the camera down and started to study is red and blotchy face. The redness grew to hives and soon covered his body. Recognizing that he was having a reaction, I hastily gave him a dose of Benadryl and watched as the symptoms subsided. I called the doctor’s office, who asked that I bring him in for an assessment, but by that time, his reaction was resolving. I knew there was little that needed to be done. We avoided solid foods until we had another visit with the pediatrician and discussed the situation. Our doctor found it quite odd that Noah had reacted to rice cereal and in fact, seemed to diminish the reaction all together. After all, it is not a common allergen and certainly not one of the top eight. He didn’t think it necessary to refer us to an allergist at that point in time because, maybe it wasn’t what I suspected, a true food allergy.
We went on oatmeal cereal instead of rice and he did well with that. We started introducing one food at a time and he again seemed to do well. Sweet potatoes, apple sauce, pears, avocado, etc. One by one we trudged forward.
When Noah was about 7-months-old, our family went the zoo. Noah was riding side by side with his sister in our double jogging stroller and his sister, Hannah was enjoying peanut butter crackers. Unbeknownst to me, she kindly started sharing a cracker with her brother. He had the peanut butter cracker in his hand and was sucking on it when I noticed the event. I wasn’t worried about her sharing with him, until I spotted the hives on his face. Maybe I was wrong. “Don’t blow this out or proportion”, I told myself. I calmly asked that she keep the crackers to herself, but before I could pull the baby wipes from my diaper bag, his hives were spreading across his face and his little lips were swollen. I wiped him down and gave him a dose of Benadryl. His reaction subsided, but a spark was lit in my concerned-mom’s heart.
I knew something was a miss with my boy when it came to food. The list of foods he was eating was growing, but another list had also been growing. Many foods he would get hives, reddened face, swelling in his mouth. The “Do Not Feed Noah” list included: rice, bananas, tomatoes, pineapple, mango, kiwi, fig, mushrooms, etc. We had not yet to try any of the top 8 major food allergens at that point.
Around his 9-month check-up, our pediatrician suggested that we try Noah on cow’s milk when he was 10-months-old. I gave him cow’s milk with his breakfast and almost immediately he began to break out in hives. His face was red and swollen. Then, a new symptom occurred that we hadn’t seen before. His nose became very snotty and his little nasal passage seemed to narrow. You could hear each breath he took trying to squeak in and out. I gave him Benadryl and covered his body in the steroid cream we had been prescribed, trying desperately to alleviate some of his itching and discomfort. His reaction subsided, but the spark in my concerned-mom’s heart grew to a full-on fire as I realized that he most certainly did have food allergies.
I shed my first tears over food allergies that day. What did this all mean? Could he outgrow these? Why was this happening? Had I done something to cause this? I was flooded with the questions and concerns any allergy parent first experiences. I called the doctor and got an appointment with a board-certified allergist.
It took a month to get in for an appointment and in that month, I kept Noah on the foods I knew he could eat safely, adding nothing new to his diet. I took Noah by myself to his first appointment with the allergist. My sweet, bouncing, 11-month-old, baby boy went along having no idea what would take place that day. Your first appointment with an allergist is long. To begin, there is an extensive interview with the allergist. After determining the possibility of food allergies, the skin testing then follows. Noah’s back was marked and one by one the top food allergens, as well as a list of suspected food allergens, were pricked into Noah’s back. A baby’s back is small, and the pricks are confusing to a baby and let’s be honest, painful. He cried. I teared up and tried my best to soothe him. The timer was then set for 20 minutes and we were instructed to wait until the timer went off and they would be back to measure the prick sites. Within a few minutes Noah’s back was very inflamed. You couldn’t determine one hive from another. He was struggling and itching like crazy. Soon, I realized that he was beginning to get hives on his face and neck. I opened the door and called for the nurse. When she saw Noah’s face she immediately got the doctor and another nurse. Together they gave him Benadryl, washed his back, and rubbed it down with steroid cream.
We didn’t complete the skin testing. He absolutely had food allergies and after he had calmed down and was deemed “stable”, the doctor began explaining the results and what this meant for Noah and our family. Noah’s food allergies were in the most severe categories. We had a new list: peanut, tree nuts, dairy, egg, shell fish, fish, soy. Of the top 8 food allergens, Noah had 7. Good news, he did not have a wheat allergy. The kid could eat wheat! Thank you Lord! The bad news, Noah was at a high risk for an anaphylactic reaction. He would have these food allergies, most likely, for life and because of their severity, he stood little chance of outgrowing them. The doctor explained that statistically Noah might outgrow dairy or egg, but peanut, would most likely stay with him for life. Our doctor didn’t mince his words and for that I am thankful.
I tried my best to absorb the information he was telling me. I needed to rid our home of all the foods to which he was allergic. I needed to pick up an Epi pen from the pharmacy immediately. He brought in a demonstration Epi pen and taught me how to use it. We role played sticking it into Noah’s chubby, little thigh. I left carrying an exhausted, Benadryl-drugged-baby, Epi pen prescription, and a follow-up appointment for a year out. End of story. Avoidance. “Try to keep him safe. Here is an Epi pen if you mess up and see you in a year.” I got in the car and sobbed my way home. More allergy tears.
I never went back to that allergist. Poor guy. He was so nice and such a wonderful doctor, but the news he had given me shattered my world and I hated him for it. Irrational, yes, but that was the reality of my state-of-being. I decided that I would never see him again and find a doctor who would help my son get well, not just give him a life-sentence.
In the days ahead, I devoured information on food allergies. I researched late into the night and during the precious hours of nap times. With any free moment, I would jump onto the computer and read article after article. Every single one of those articles said the same thing. “Avoidance. Try to keep him safe. Use your epi pen when…” There seemed to be little hope in 2012.
I turned my energy to finding recipes and foods that Noah and our family could eat. I visited special grocery stores and made new foods and recipes. I was determined to keep my son safe and growing, but I was also determined to let him live a “normal” life with great foods.
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This approach seemed to work for a few years, but soon his food reactions started adding up. We had countless rounds of Benadryl, Epi pens, hospitalizations. Around Noah’s 3rd birthday we had his yearly check-up with his allergist. We repeated blood work to evaluate his allergen levels. I had been praying and praying that his numbers would go down. We had been told that as a child approached the age of three, he could possibly out-grow his food allergies. If the child did not outgrow them by the age of three, the food allergies would most likely stay for life. It seemed like now or never.
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I awoke early a few days later and before I got out of bed, I checked my email inbox. The results were there. I couldn’t believe my eyes. Tears began running down my face. His levels had not gone down, in fact, his levels had tripled. He was not getting better. This was not all going to go away, but rather, we were in a battle that was only beginning.
Again, we avoided his allergens and tried our best to live our lives well, but the reality was the reactions seemed to come more frequently and each one seemed worse that the one before. Something had to change. There had to be a better way. It was during what I like to call the “Target incident” (a massive anaphylactic reaction from cross-contamination), that I realized we were not only trying to give Noah a quality life in the midst of food allergies, but we were truly in a battle to preserve his life.
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God answered my many prayers when my parents read a newspaper article from the Wall Street Journal, while on a cruise ship to Antarctica, about oral immunotherapy and food allergies. My dad texted and said I should read the article. For the first time in now 4 years, we had a glimmer of hope. Maybe there was an answer.
At the time, oral immunotherapy (OIT) was not offered in our state as a treatment option. It was offered in various research forms, but we didn’t want to take a placebo, nor wait 3 years to slowly obtain protection. We wanted treatment. We needed treatment NOW.
We traveled to Dallas, TX to start OIT for milk, the source of most of Noah’s anaphylatic reactions. We flew for seven months, each week to Dallas to complete a 24 updose protocol. Our lives began to change. There was hope. There is hope!
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Noah has since completed OIT for milk (dairy), egg, and is currently in the process of peanut. You can read more about OIT on my blog. If you are in the fight for your child’s life, you NEED to research this treatment option.
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Noah has outgrown some of his allergens and been desensitized to others from OIT. He still has severe allergies to walnut and pecan. He recently had two hospitalizations from accidental exposure to those pesky tree nuts. We hope to do OIT for them in the near future after he completes peanut.
If you are an allergy parent. I am here for you. I see you. I understand you. This is a unique club that we never chose to be a part of, but we would choose our precious children any day, and therefore, we choose to navigate life with food allergies.
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You are brave, your kids are brave, and what you are doing is no small thing. God is with you and with His help, we got this.