Elena was born in December of 2008 and we couldn’t have been more thrilled with our happy baby girl. Aside from some minor bouts with fussiness, reflux, and eczema, she seemed to be the picture of perfect health. She was never sick and was growing like a weed. Some prescription cream and occasional use of Benedryl cleared up the eczema and the reflux went away on it’s own in no time.
Elena did well with food when she started on veggies at around 6 months. She seemed to love everything and had a healthy appetite. We were eager to try new foods, but tried to stick to the guidelines given to us by our pediatrician. We knew dairy shouldn’t be introduced until 1 year, but we had read that yogurt could be introduced a bit sooner than other forms due to the probiotics and live cultures. We decided to try it a couple of days before her 9 month appointment so we could report any findings to her Dr. We gave her a bite of organic, full fat, plain yogurt and she immediately spit it out. Within minutes her face around her mouth and hands where she had touched her mouth began to swell with tiny hives. We washed her skin and took photos for the Dr., which we brought to her appointment. These photos, along with her history of eczema, prompted the Pediatrician to run bloodwork for food allergies.
The experience of having blood drawn from a 9 month old was horrific. As her Mother, I was asked to assist in holding my baby down on a table while the nurses attempted to draw several vials of blood. The hope was that it would be less scary for her if she saw me rather than a stranger, but with three adults working together, we could barely keep her still enough to successfully complete the task. I remember feeling dizzy and dazed after the experience. I felt numb walking out to my car as a nurse helped me by pushing my stroller out as I carried my sweet baby who was still crying. She told me that there might be bruising on her arm later because she had to grip her so tightly to keep her from moving. I cried all the way home, wondering if bringing the photos was a mistake. I was certain we had put her through this for nothing. I was certain these tests were simply a formality to cover our bases, but what were the chances that the findings would be significant to us? How could I be so neurotic that I forced the Pediatrician into ordering such a painful and horrific test for a baby?
I’ll never forget the message on my answering machine from the pediatrician’s office revealing the results. The nurse leaving the message said Elena’s results showed severe allergies to...eggs....milk....peanuts....tree nuts...wheat...and dog. With each additional item, I felt my heart sink deeper. The list seemed to go on forever, although it was only six words. She added that we should avoid any and all foods with these ingredients and that we would be referred to an allergist for an appointment. This was my intro to food allergies. Initially I felt confused. In an attempt to calm myself, I kept repeating in my head, “it’s only food”. After all, some children live with terrible illnesses that impact them every day. This is just food, right? Wrong.
Since Elena was only 9 months old, she had never eaten most of the foods on her list. I, unfortunately was eating all of them, and because she was still nursing, she was ingesting trace amounts through my milk. I cut all of them out of my diet and we began to see changes in her. First and foremost, her skin issues virtually disappeared. She also seemed happier in general. The only food she was eating on her allergy list was wheat. We found Oatio's to replace cheerios and a few other replacements. We cut out bread because we never found a desirable substitute for wheat bread. I on the other hand underwent a dramatic change. I struggled to find safe foods while trying to wrap my brain around what this all meant. We scheduled an appointment with the allergist and a month after getting our test results, we finally got some answers.
We went in and sat down with the allergist a little over a month after making our food changes. He interpreted our test results and answered a sleuth of questions. We found out that the wheat levels were low and since she had tolerated wheat in the past, we could reintroduce it. He told us to carefully read all labels and avoid any food that is processed with one of her allergens, even if it doesn’t contain one as an actual ingredient. He also told us when to use Benedryl and gave us a prescription for an EpipenJr. With all of the information, our heads were reeling and we went home to attempt to process it all.
I was quickly figuring out the ‘food’ challenges of having a child with food allergies. We had a lot of decisions to make without a lot of information to base them on. I decided to continue nursing and follow the no-allergen diet, which ultimately helped me learn a lot about food options before Elena was even ready for them. I would later be glad I did continue nursing because the following winter was the year of the Swine Flu epidemic. Elena’s egg allergy made vaccination very difficult. The pediatrician and health departments were not comfortable administering the vaccination to her due to her egg allergy since the vaccination could contain egg. Her allergist, who was comfortable giving it to her, could not get any because there were limited supplies and the vaccinations were not being distributed to allergists. In the end, I got the vaccination and continued nursing through cold and flu season in the hopes that the antibodies would reach Elena through my breast milk.
Another decision we had to make was how to handle her allergies in our own home. We ultimately determined that our entire home should be allergen free. It has taken a long time to reach a point where we are comfortable with our level of safety in our home. We went back and forth on having “cheats” on the top shelf of the refrigerator or pantry. We also have had a hard time with people bringing in allergens. To some, knowing our home is free of allergens has been interpreted as, ‘bring your own’. Our intention was not that people should supply their own, but that they would forego consuming these things while in our home. As time has gone on, we have become more comfortable being upfront with our guests and letting them know that we feel strongly that Elena should have at least one safe place in this world, and that is her home.
As it turns out, living with food allergies is so much more than living without certain foods. It means every day activities can be dangerous. Simple pleasures like, going to the movies, attending a collegiate or professional sporting event, birthday parties, and holidays become dangerous and terrifying. Travel takes on unimaginable complexities. Attending school seems like an impossibility. Even simple play dates are effected.
My child cannot eat pizza, ice cream, cake, cookies, brownies, movie theater popcorn, most candies, fried foods, grilled cheese, mac and cheese, corn dogs, cheeseburgers, french fries, eggs, muffins, cream cheese, milk, peanut butter and jelly, trail mix, anything that has touched butter, mayo, cheese, or is fried in oil with these things, many breads, yogurt, quesadillas, creamy dressings, nachos, pasta made with egg, goldfish crackers, chocolate, pudding, whipped cream, hot chocolate, doughnuts, or anything made in the same facility as any of her allergens. Would you invite her to a party? Would you have her over for a play date or a sleep over? What in the world would you feed her? Would your child think it was worth it to give up their favorite snacks for a day in order to have her over? Would you be able and willing to administer the Epipen if needed?
Fear and Guilt
The emotions you go through as a parent of a child with severe food allergies are numerous and extreme, but by far the fear and guilt are the worst. The fear could easily consume me on most days. I know that at any moment, my daughter could take a bite that could be her last. I know that the simplest thing to most people, could kill her in a moment. I know that to most people, she looks perfectly normal, which increases the risk of an incident. Any time she spends out of my sight is excruciating. How do I let her live, and keep her alive? I know I have to do everything in my power to give her a normal experience of the world and to teach her to manage her allergies. I also know I have to trust other adults to place her safety above everything else going on around her. How can I trust anyone but myself to love her enough to do this?
The guilt is almost as debilitating as the fear. It comes no matter which choices I make. I have friends and family who go out of their way to provide a safe environment for Elena. I find myself resentful that they have to be so inconvenienced by us and that I have to ask for such special treatment. I know that I often send mixed signals. When someone informs me of a special precaution they took for us, I sometimes feel an overwhelming urge to play it down and tell them it wasn’t necessary. When someone asks me if it’s fine to serve an allergen to their child who is sitting beside Elena, I want so badly to act like it doesn’t matter. I want to convince myself that something so trivial could not possibly put her in danger. Sometimes I give in to this desire to feel normal. Then comes the guilt. How could I pretend that it’s not a big deal? Of course it’s a big deal. Because I needed in that moment to feel normal, will they think they need not take precautions next time? If I respond differently, the guilt comes anyway. If I ask for precaution, I am being unreasonable and difficult. Who will want to keep us around if they have to go to such extremes in order to accommodate us? Am I asking too much? Is all of this really necessary? What would be the price of finding out?
Sometimes as parents of allergic children, we let our guards down. We get comfortable and maybe we haven’t seen a reaction for so long that we think we must be going overboard. We have to remember that the absence of a reaction means we are making good choices. That is the goal. Sometimes we so desperately long to feel normal as parents and for our children to feel normal among their peers, that relaxing our precautions is tempting. We will be faced with these challenges every single day, over and over. We have to remember that the price of being wrong is simply too great.