There is an increasing number of individuals and families in the world who are learning to cope with the struggles of food allergies. This entity is not partial to race, religion, socioeconomic status or gender. It has no determined age of onset, it has no known definitive genetic trigger or cure. It is simply something we, as families, are just trying to survive on a daily basis….and, along with scientists, physicians and many other advocates, are working hard to understand and rectify.
Since a significant portion of this blog is meant to center around our family’s journey through life, many of those steps already taken carry the food allergy imprint. To help you, the reader, understand from where we are coming on this part of the adventure, I felt it was important to share a little of our story with you so we can hopefully find yet another way to connect through experience.
~ Let’s start at the beginning ~
Our story starts with our first son. B’s delivery was rough, but his infancy was near perfect. He was a healthy, happy, stubborn and curious little boy. Around the age we began to introduce foods, we did notice that B was developing eczema and, when given his first turkey sandwich with mayo, he had some angioedema around his lips. It was a friend who mentioned her thoughts about food allergies and she referred us to Allergy at the Milwaukee Children’s Hospital. That was our first big shock as we saw skin testing reveal that he was allergic to eggs, wheat, peanut, milk and a slew of other items. We were floored, devastated in fact. We had no idea what to do. At that point, we felt caught off guard and near depressed. We were worried that there would be nothing for him to eat as we learned about disclaimers, hidden ingredients and the potential hazards of cross contamination. What we didn’t realize was how easy we actually had it with our first son. We had no idea what lie ahead of us.
Our first son’s allergies followed a pattern to resolution. By three, he was able to tolerate wheat and dairy, and the onslaught of other foods that were perhaps Class I or II reactions. By four, he was able to eat peanuts and, by five, we added eggs back into his diet. It seemed like his allergies had resolved and we were able to bring peanut butter back into the house. Yeah, peanut butter!
Our second son was fine. He had a few minor allergies within the first year of his life; however, the physician was so concerned over his thin appearance (though he was still very healthy, just had a very high metabolism and still does), he requested that we slowly try to reintroduce dairy….and then oat, the only two things for which he proved positive on skin testing and RAST/IgE (the most common lab studies utilized to determine the potential for allergic reactions within the blood stream). A was going to be just fine…..and peanut butter stayed in the house.
~ Here Comes Trouble ~
Then came our third son! His dramatic tale truly begins with conception as I constantly refer to him as the boy who started causing trouble in utero. It was a very difficult pregnancy for both of us, riddled with blood pressure issues, the fear of a pulmonary embolism, several preterm labor episodes, gestational diabetes and, ultimately, an early birth by a semi-emergency c-section. Fortunately, we held him in until 36.5 weeks, but he was already 8 lbs 6 oz at that point. Thank, God, we got him out! However, right from birth, we noticed that his skin was not quite all pink and soft. He had already developed eczema and he was extremely fussy.
Nursing was a complete nightmare with L and we began to notice that he was frequently gagging, his tongue was sticking out and he was vomiting often. His eczema flare was so bad, his skin was cracked and bleeding. I was terrified to leave him alone in a room to sleep, afraid he would scratch himself and bleed to death. Doctors chalked it up as regular baby cradle cap and eczema, barely listening to my mommy intuition that told me something was wrong. Based on our experience with B, I began to think about the potential of L having food allergies and tried to wean things out of my own diet to see if we could change his reaction during nursing. This was, sadly, to no avail. He continued to struggle and I continued to grow more and more depressed.
~ The Battle For Answers Began ~
I fought hard for an Allergy referral, but no medical professional felt a child under the age of one should be seen by an allergist. Instead, they sent me to four dermatologists, all with differing opinions and various methods of treatment. One even wanted to do a skin biopsy to test for some type of cancer! We tried Aveeno, hydrocortisone, Aquaphor, vaseline, etc. Nothing worked! I eventually decided to stop nursing and use a formula we had used on our first son when he had eczema (of note, B’s eczema was nowhere near this point of worry).
As time went on, L cleared up a bit….until we began to introduce foods. Even though he was Baby #3, we still waited until the recommended age and took the standard new food every few days approach. We really needed to see if foods were the cause of his skin condition. It felt impossible to determine. Finally, our pediatrician, skeptical beyond all get out, allowed us to go see Allergy for an opinion. Allergy would only allow us to test three foods – milk, wheat and soy. Milk and wheat tested positive, but they considered L very dermatographic, so they didn’t rely on the results. Instead, they had us go for RAST/IgE testing to confirm.
To our amazement, the labs proved negative! In fact, they were 100% negative and the doctors told us that L had no food allergies and, with the results of his IgE, would likely never develop them. They were under the assumption that L’s skin was simply just highly sensitive and that we just needed to keep his skin lubricated. Okay – well, that was somewhat of a relief, but I didn’t quite think it was accurate. We instead continued our vigilant attempt to determine what was causing our son’s discomfort. By this point, his skin looked like he had chemical burns and his tongue was constantly hanging out of his mouth, as if it didn’t fit inside.
~ Happy 1st Birthday, Welcome to the ER ~
Fast forward to Birthday #1! We made it! He was an entire year old! We dropped his brothers off at school and took him out for his first pancake at IHOP. THIS is where the worst part of the nightmare began (no fault of IHOP Restaurant – they did great!). My husband had innocently asked me if we should give L a bite of the eggs on his plate. I was nervous. We had no Benadryl, no form of epinephrine. I was a bit worried something would happen. My husband then reminded me that the allergist said testing was normal and that there was no potential for him to have food allergies. All right, he convinced me, so we did it. We gave L a dime-sized piece of scrambled egg. I mean, he had had no reaction to the pancake, so egg MUST be okay for him, right? WRONG! Within thirty seconds, he was breaking out in hives everywhere. His eyes and lips were swelling. His nose was running furiously. He was rubbing his eyes vigorously. He was obviously fussy and then it happened….he started to gag and choke! My baby was choking!!!
~ Grateful for Kind Hearts ~
An IHOP employee called 911 and, fortunately, there was a nurse inside the restaurant eating her breakfast with friends. She came over and helped us through it emotionally until the emergency medical team arrived. To be honest, I never saw medical personnel arrive to the scene that fast before! I turned around and they were there. Immediately, L and I were escorted to the ambulance and my baby’s vitals were taken, while I explained what happened. His oxygen saturation had already dropped below 90% and oxygen was applied. Okay, well, they attempted to be apply the mask. L was not really a fan, so we kept it as close to his face as possible for blow-by. His very first epinephrine shot was administered right then and there. Can you imagine how hard it was for me to keep it together? (L, meanwhile, was crying, but playing with anything he could get his tiny little hands to grasp).
~ Believe Me Now? ~
So, L’s first birthday will be remembered as the day he took his first ambulance ride to the hospital, received his first epinephrine injection and scared the living daylights out of his parents. We spent most of his special day in the emergency department (but the docs and nurses thought he was absolutely adorable). To sum up the story from there: We now had a documented allergic reaction. I called his pediatrician and said, “See? I told you!” and we were finally sent back to Allergy, where I said the same thing to them. Testing at that point, now that he had passed the one year old marker, demonstrated severe reactions to eggs, wheat, peanut, milk, fish, oat, corn, cat and dog. Nurses were coming into the room specifically to gaze at the size of his reaction to peanut. Yeah – that was devastating….but ironically a relief, as well. Mommy intuition was right…and now I had the experience and testing to prove it.
~ Where We Are At This Point ~
We are approaching the nine year anniversary of that frightful day as our youngest will be turning ten very soon. His allergy list has dwindled in number down to eggs, peanut, tree nut and shellfish (yes, we lost a lot, and picked up two), but the intensity of his reaction remains life-threatening. His story remains complicated by an airborne component, a contact component and several types of reactions that seem to vary by food. He has had perhaps three or four severe reactions, but, thankfully, nothing that has hospitalized him to this point.
His educational track has certainly been complicated as the public school system has not worked for him in the past (not even with the coveted 504). He was bullied by one teacher, criticized and ridiculed by many parents and haunted by the frustration of nurses, principals and teachers. The decision was made to homeschool until we felt he was strong enough to be his own advocate AND we could find a school educated and compassionate enough to handle food allergies well. After three years, we finally found a private school that takes such great care of him and has a proven record of food allergy safety! To this point, his first year back, we have had very minor issues and a great staff that watches out for him! (PS – the little stinker skipped a grade in the process!)
~ Just One Story of Thousands ~
Our story is one tiny little speck in the Food Allergy Community. There are thousands upon thousands of individuals, both young and old, whose stories either take a more tragic or dramatic turn or, otherwise, give us hope towards resolution and a cure. THIS is where our hope lies – in finding a way to completely eliminate the fear and dangers of food allergies, in finding a cure….in being able to walk into a room and not worry what in the air may be causing L’s ears to swell so quickly.
At current, we are facing no etiology, no concrete theories. In fact, L defies every theory out there right now, such as the hygiene hypothesis (he’s the third kid…really?), mom ate too much of an allergen during pregnancy (hate peanuts) or mom ate too little of an allergen during pregnancy (craved eggs morning, noon and night). At the moment, we are simply left guessing how did this happen. How do we keep them safe? How do we teach THEM to stay safe when we are not there to control the situation? And ultimately…..are they going to be okay?
This was just the beginning of our story and L is doing very well these days. I hope to share many food allergy successes and (fewer) lessons learned as time goes on (school, vacations, dining, etc) and I hope you find yourselves tagging along for the adventure.
Until the next step ~ T