My son has a severe tree nut allergy and I’m not going to lie, it kind of rules our lives. Food is obviously integral to our survival, a part of almost every social gathering, and a way something we think about at least three times a day. When I look back at how we’ve maneuvered through this phenomenon, there are distinguished “stages” I’ve gone through as a food allergy mom.
- Denial: This is what happens when you don’t wear underwear.
When my son was two he was diagnosed with a sesame seed allergy. He got a few bumps on his upper lip after eating hummus the first time. They cleared up quickly and without the use of any medicine. Because of this though, he was issued an epi-pen, and tested for peanuts. Peanuts came back negative. Fast forward about a year. We are at a park with friends, and another mom gives him some raisins and M&Ms that had been part of a trail mix. Shortly after, he throws up. The other mom, a nurse, says that the stomach flu is going around and attributes it to this. An hour later, he’s scratching his upper thighs. At the time, he was going through a phase of refusing to wear underwear. I told him this is why he was itchy. An hour after that, we are back home. He is playing video games. Standing in our basement, having fun and laughing, but making this noise like he’s clearing his throat. After awhile of this I called my pediatrician. The noise he was making was him reacting to the fact that his throat was closing up. Holy sh*t! I stuck him with the epi-pen and drove him to the ER. My son was having an anaphylactic reaction; and I, who was supposedly educated in food allergies because of his sesame seed allergy, did not realize what was happening. Start to finish it was four hours from when he ate the raisins and M&Ms until I administered the epinephrine. It turns out he also has a severe tree nut allergy, and there had been nuts in the trail mix. Although he did not eat a nut, the dust from them contaminated the raisins and M&Ms. In my mind, an allergic reaction like this would have happened quicker, and been more obvious. Each part of the reaction (vomit, hives, clearing the throat) happened with quite a bit of distance in between. And the vomiting and hives happened and then went away. While this was the shortest “stage,” it was the most important as it changed our lives.
- Paranoia: Hives? Slight cough? Stick him with epi.
For the next several months I watched him like a hawk, reading and re-reading the labels of everything he ate. We had a few false alarms where I administered the epi-pen for what I thought was an allergic reaction, when in fact it was not. One time he had hives because of a virus. I now associated hives with a food reaction. Another time he had a slight cough and I mistook it for his throat closing. That time I had asked him if he was having trouble breathing. He said “yes.” My husband, who knew it wasn’t an allergic reaction, responded with “wrong answer my friend” as I administered the epi-pen. Fortunately, and this is important for everyone living with food allergies to understand, it is better to air on the side of caution. Administering epinephrine will not kill you. But the alternative can. Each time we brought him to the ER during this stage, they assured me I did the right thing by giving it to him.
- Overcompensation: Why yes I will pay $10 delivery for a bag of candy corn.
I read everything I could about food allergies and joined every moms’ group I could find. I bought food and candy from expensive websites so that he could eat the same items the rest of us could eat. I did the best I could to make sure he didn’t think he was missing out, or was different from the other kids. To me this was the worst thing that could have happened. When in reality, of course, there were parents who had it much worse than me. But this was my reality. Eventually I stopped buying so many items online and became selective, as I accepted that there were simply some items that he wouldn’t be able to eat. The thing was, my son was more accepting than I was. He didn’t like the attention his new found food allergies drew to him, and he was fine staying on the sidelines while other kids ate what he couldn’t. He’d rather continue playing at a birthday party than being singled out and having his nut-free treats while the kids ate the provided treats. I was trying to keep things as “normal” as possible while he was already accepting his new reality and moving on.
- Lone Defender: Nobody can save you but mom.
I made it my personal mission to take full responsibility for his safety, and didn’t trust anyone to read labels, avoid cross contamination, etc. like I did. If I wasn’t going to be with him outside the house, I checked three times that the person that was with him had his epi-pens. There were times in the beginning that my husband would forget the epi-pens, and I’d be furious – how could this not be on his mind constantly, like it was for me? These instances would make me even more of a control freak. If my husband was just down the street with him, at the park or baseball practice, he’d think it was ok to not have the epi-pens and just not let him eat anything. This wasn’t acceptable to me and I’d run the epipens over. We had several arguments during the first few years of this new lifestyle. Shortly after he was diagnosed, my husband put some of the responsibility on my son to remember his epi-pens, saying that “he was the one who was going to die.” While this sounded harsh, his point was true; he wanted my son to quickly learn and take responsibility for having this life-saving tool on his body at all times.
- Guarded Acceptance: We will survive.
It’s been several since my son was diagnosed with food allergies. It’s something I still think about daily. Grocery shopping takes me forever, as I need to read every single label. Food producers often change facilities, ingredients and manufacturing partners – and therefore their allergy labeling often changes. We’ve been told he’ll never outgrow his nut allergy. Vacations, eating out and meals at other people’s houses still make me nervous. But I do my best to ask questions, feel comfortable and move on. I don’t stare at him waiting for a reaction like I used to. As he gets older and is away from me more and more, it’s even more challenging as he needs to make sure he takes his epi-pens with him (and doesn’t forget them at his destination). He has to have a bag with him at all times (boys don’t carry purses and it’s hard to make this a habit. Can the fanny pack become cool??).
While a food allergy lifestyle will always be a part of us, I’m not the crazed, paranoid, over-protective (some may argue this point) mom that I was in the beginning. We adapt and survive, am I right??