What it’s really like having a child with anaphylactic allergies.
*disclaimer: I am not a doctor, a nutritionist, or an expert on anaphylaxis. These are my personal experiences. If you have any questions regarding your health or that of your child, please consult your physician.
According to the dictionary, a haven is a place of safety or refuge. While much of my blog is devoted to sharing how I make our home into a retreat for my family, today I am sharing more of an insight into what it takes to keep my family safe; in particular, my son Sam.
Sam on the day we moved into our new home in Albuquerque this past summer.
My husband and I have long been fans of all kinds of nuts. It seems so arbitrary, really. Who cares, right? That love was passed on to our girls and we always had cashews, pistachios, pecans and walnuts at home. We used them in salads, in baking and even on our fish! One day in August, 2011, my girls were snacking on cashews. My son, who was 19 months at the time, put one in his mouth, started chewing it, but immediately spit it out. I remember laughing and saying, “I guess he doesn’t like them.”
He was toddling around our on-post apartment and playing with his sisters. He left the living room for a minute and when he rounded the corner back in, I noticed he was hoarse. I assumed he was getting a cold, but I thought it was strange how it came on so suddenly. Shortly after that, I went to lay him in his crib for a nap. When his head tilted back, I could see welts forming all along his neck and under his chin. My mind flashed immediately to allergies.
I picked him back up and called the nurse advice line. We were living in Germany at the time and this was something provided to us by the military. The nurse I spoke to advised me to give him Benadryl and keep an eye on him. I gave him Benadryl and he took a two hour nap in my arms. I did not want him out of my sight. Knowing what I know now, he should have been taken to the emergency room and been given epinephrine immediately. I thank God every single day for His protection over my baby that afternoon.
Food allergies have become somewhat of a controversial thing lately. With the surge of food “intolerances,” it is easy for the subject to become muddied. For example, I have several food intolerances. I have abstained from eggs, lactose, and gluten for three years. If I did eat one of these ingredients, I would be struck with a migraine that would leave me bed ridden and useless for upwards of five days. It sucks, but eating one of those ingredients would not kill me. And I did not have to worry about cross contamination at all.
With someone who has a food allergy, such as my son, ingesting even a microscopic amount of that food can quite literally be deadly.
After the cashew incident, we had blood tests done and they revealed my son did indeed have an allergy to cashews and pistachios. We re-tested several times over the next few years in hopes of him outgrowing the allergy. Unfortunately, his allergy only grew to include all tree nuts. Tree nuts are any nuts that grow on trees including cashews, pistachios, walnuts, pecans, macadamias, hazelnuts, and Brazil nuts. We are extremely fortunate that his allergy does not include seeds… for now.
So, what does this mean for us as a family? And what does it mean specifically for Sam? For starters, he obviously cannot eat or use any product that has any type of tree nut in it. Do you realize how many shampoos, conditioners, lotions, etc have macadamia and almond oil in them? I never paid much attention until my child was diagnosed.
Sam also has to abstain from anything processed or manufactured in a facility that also processes tree nuts. Like I mentioned before, a microscopic amount of a nut protein can send him into anaphylactic shock. This means we are pretty limited when it comes to foods we buy and restaurants we eat out at. Even bread is getting tricky to find. I used to prefer organic, but it is impossible to find one that is not processed in a facility where nuts are used. All of these things are inconvenient, yes. But they pale in comparison to the terror of an allergy scare or the anxiety I feel anytime we eat out or travel.
Sam looking out over Lake Michigan.
We recently flew to Chicago for a family vacation and the idea of being 20,000 feet in the air away from any type of emergent medical care terrified me. Yes, we had two epipens with us, but they have been known to fail. I am so thankful we did not have to use them. Either I or my husband pre-boarded the plane to wipe down the entire seat, armrest, window, tray, anything Sam may touch. We have no idea what was eaten in that seat before us and the airlines will not guarantee our safety.
Speaking of safety, there is a grand misconception about epipens. I admit, I did not understand until I had to. Epipens are not always guaranteed to work. There have been landmark cases of children losing their lives after several epipens were administered. Sadly, I read these stories several times a year.
Because of these incidences, the standard protocol for an allergic reaction has changed. Doctors used to say if an allergen was ingested, take Benadryl and monitor. Then epi, and finally go to the ER if necessary. Now, they have learned if epinephrine is not given as soon as an allergen is ingested, it may not be effective. The guideline now is “Epi first, epi fast.”
I am thankful for that guideline. But there have been several times recently where it caused me and my son great distress. What do you do when you don’t know if he had ingested an allergen? Two times this fall, I was struck with this impossible situation. You are literally trying to make a decision between grossly overreacting or letting your child possibly die. It sounds dramatic and it is. If you don’t use the epipen and it turns out they have in fact ingested an allergen, there is a risk the epinephrine may fail. But if they didn’t actually ingest it, well, you’ve injected your child with a powerful steroid and they still have to be taken to the ER and be monitored.
After these two occurrences of possible reactions, I made myself have a clear plan of what I would do in the next case. First of all, we got a lot more strict about what is in our home and what we allow Sam to eat.
My superhero.
The first scare was at a resort in Taos while we were on family getaway. My husband and Sam got up super early and had coffee and a bagel at a local shop. We didn’t think to ask the shop if that bagel was produced in a nut free environment. Hours later, Sam started complaining of an itchy throat. I will tell you the next couple of hours were terrifying. He ended up being fine and did not have any anaphylaxis, but we stayed near the hospital in town for the remainder of the day.
The second incident occurred in our own home. After Sam brushed his teeth, he used one my anti-aging lip serum capsules. The problem with this product is that this specific formula had been retired for almost two years and I could not find the ingredients anywhere. I knew without a doubt the new formula has macadamia oil in it and that is why I never bought it. However, I could not recall if the old formula did. When I purchased that serum, I was not nearly as educated on his allergies as I am now. Again, the next several minutes were grueling as I tried to find an ingredients list so I could make a decision to use his epipen or not. We also had to have a hard discussion about never eating, drinking or putting anything on his body without running it by me or my husband first. This resulting in hysterical sobbing from him and his sisters as they feared for him. I finally found an old box with a full list of ingredients and thank God, it did not have any nut ingredients. I still slept with him that night and hardly slept. I cancelled all my plans for the next 24 hours just to be with him and make sure he was okay. Since that evening, we’ve gone through all of our toiletries, skin care, everything. We are much more strict about what is allowed into our home. As I said, my goal is always to make our house a safe place and a refuge for everyone in my family… especially Sam.
I cannot thank you enough for taking the time to read this. If you are a fellow mom of an anaphylactic child, please reach out to me. We need all the community we can get. If you know someone who has food allergies or has a child with food allergies, give them a lot of grace. It’s a scary road to navigate.
