It started with a little rash, just a few red bumps around his mouth, nothing we hadn’t seen before when trying new foods. As it was peanut butter, though, we were a little more attentive. The second time we gave our son peanut butter the rash was bigger, and appeared in more places on his body: the crook of the elbow, the backs of his knees, around the edges of his diaper, and of course around his mouth. He was a little under two years old, not really able to tell us how it felt.
So we went to the doctor and shared this development. Sometimes there is no worry; kids get rashes and they can be completely innocuous, no need for big alarm bells going off in mom and dad’s heads. Sometimes, though, rashes can be indicators of serious problems, like my son’s severe allergy to peanuts. So I took him to the allergist.
I don’t know if you’ve ever been tested for allergies, so I’ll give you an idea of what it’s like, because I’ve experienced this. First, the nurse uses a permanent mark to make dots up and down both forearms, numbering every fifth dot. Then a clear drop of liquid is dabbed onto each dot, followed by pricking the skin to make sure that the drop can react if an allergy is present. No matter what the nurse says, that pricking can hurt, on some parts of the arm more than others. Then there is the wait. Fifteen minutes. At least one spot, the control spot, will itch like mad, and no scratching is allowed because it can affect the results of the test. The more allergies are present, the more itching there is. My testing was for environmental allergies and both arms were covered in red, itchy, welts. Think poison ivy, chicken pox, bee stings, mosquito bites. Got it?
Try telling that to a toddler. You will need a way to distract this small child who has no idea why you are subjecting them to this torture. Books didn’t cut it for long – the attention span just wasn’t there yet. Eventually I invented a game for him where I would call out a color and he would jump to the corresponding colored tile on the floor. Amazingly, this game worked for well over ten minutes.
The results of the test were pretty clear before the doctor came in to check them, and I began adjusting to my life’s new normal. He is eight years old as I write this, and every now and then a new challenge pops up. What are some of the elements of my new normal?
Fear: My child has a life-threatening allergy. Even with immediate medical intervention, if he accidentally eats so much as a tiny piece of a single peanut, he could die. Every time he goes to a friend’s house, I worry. When he is at school (the allergy table is right next to a regular table with kids scarfing down peanut butter and jelly), I worry.
Uncertainty: He feels sick whenever we go to the movie theatre. Having felt sick to his stomach in movie theatres in three separate states, he has recently decided he does not want to go ever again. Is it because people eat a lot of peanuts and peanut products at movie theatres and they don’t clean the theatres well? Is there some other environmental factor at work here? Chances are, I will never know.
Flexibility: Airlines typically serve peanuts, and due to their air circulation systems, little flecks of the stuff can get everywhere in the plane. When we went to Disney World we drove to Lorton, VA and too Amtrak’s AutoTrain to Orlando. The boys loved sleeping overnight on the train, and they loved the food. As a bonus, we didn’t have to lug a carseat and a booster seat on a plane and put them in a rental car because our own car rode on the train with us.
Trust: It is possible to get an airline to put you on plane where they will not serve peanuts and will make an announcement that a child with a serious allergy board, so please don’t eat peanuts. That will not stop passengers from putting their own wants over the life of your child. I read about this happening once, and the plane had to make an emergency landing to get the little girl to the hospital. So I’m wary of situations where I have to trust strangers with my child’s life.
Heartbreak: It was a couple months into Kindergarten when I came to a realization. Maybe the reason my son did not want to attend any of the other children’s birthday parties was not inherited social ineptitude. It was the invitation to the pool party that tipped me off. He so clearly wanted to go, but told us no. I asked, and had my fear confirmed. He kept telling us he did not want to go to any of the parties because he was afraid there would peanuts there. Together, we worked out a way to make him comfortable. I quietly informed parents of his allergy whenever we got an invitation. Every single one of them was understanding, concerned for his health, and eager to make sure the party was safe for all children.
Public Scorn: You would think this wouldn’t be an issue, right? He’s a kid who can’t help that he has a severe allergy. I had a coworker who, when I requested it, refused to put on a flyer for a picnic that there would a child there with a severe peanut allergy. She told me that other people should not have to inconvenience themselves, and that my kid didn’t work there, so it’s not like he had a right to be at the family picnic. I’m just going to stop here on that one and let you fill in how that made me feel. Luckily, most of the other people attending knew about my son’s allergy and had no trouble making sure he was safe.
There are some benefits, too, believe it or not, and most people we encounter are very helpful and understanding. The chefs at Disney World come out to talk to him and explain what food is safe. Jake’s Wayback Burgers uses soynut butter in place of peanut butter in their milkshakes. You wouldn’t necessarily think there was a bright side to such a scary situation, but it is truly astonishing what we can find in life when we look for it.
Pride: To avoid hovering over him every step of the way, and to lessen some of my own anxiety, I had to teach my son to self-advocate at a very early age. Whenever he is in a social situation where food is part of the experience he asks an adult whether there are peanuts in any of the food and tells them he is allergic. He reads ingredients. He tells restaurant hosts and wait staff about his allergies. This ability spills over into other areas of his life. He is not afraid to speak up and make sure his needs are met.
Health: Being so very conscious of the potential effects of peanuts on his body has made him curious, and then remarkably aware of the health benefits and drawbacks of all sorts of foods. He limits his intake of sweets and snacks – he even refuses to bring dessert in his lunch bag because he would rather have healthy food. Recently, he complained to me that I was not giving him enough vegetables. He has his own garden.
Awareness: There are all sorts of difficulties that different children face. I had a conversation with a friend of mine whose daughter has albinism – totally and completely different from my son’s peanut allergy – and how our lives have changed because our children’s diagnoses. We pretty much touched on everything I wrote above. We are able to relate to each other in a way we might not be able to with other parents who do not understand. I am more aware of what parents who raise children with special needs go through on a daily basis, even though the severity can be drastically different.
Preparedness: Clothe me in olive green and call me a boy scout. Everywhere I go I carry an Epi-Pen. I have to provide Epi-Pen, Benedryl, and an official Anaphylaxis Plan to all schools and summer camps. I train babysitters in the administration of the epinephrine, just in case, even though our house is a peanut-free zone. I am vigilant at parties, church, ice cream stores, and everywhere else we go, whether or not we intend to eat the food there.
So what might you take away from this?
That little rash that pops up when you give your baby a new food to try might be nothing. You might just be seeing a touch of contact dermatitis. Or you might be seeing the development of a serious allergy. Record rashes and communicate in detail with your pediatrician.
Raising a child with a severe allergy is difficult, scary, anxiety-inducing, but also rewarding, fun, and eye-opening. My son is a talented swimmer, pretty good with Tae Kwon Do, ridiculously sharp when it comes to math, clever with word play, silly, smart, and has wild hair that leads me to call him my Hobbit. I would not change a single thing about him.
About The Writer
Sarah Hyson – Writer, Teacher, Mother of Two, Sci-Fi/Fantasy Enthusiast.
She lives in Westchester, Pennsylvania – USA