If I’d written this a year ago, my perspective might have been a little different than it is today. Our son Kevin is 11-years-old and severely allergic to dairy, eggs and peanuts. We used epinephrine on him only once in those 11 years, and were very proud of our track record, especially with his list of severe allergies. After all, how many times a day do we eat? Three meals, snacks, parties, holidays – OK we eat continually. Then we had two back-to-back accidents within three months that threw everything we thought we knew out of the window.
When I read accounts in the past of children who died because the EpiPen wasn’t given immediately, I silently wondered how that could happen. Why would anyone hesitate? After all, it’s easy to use, it barely hurts, it does no harm if used when not needed (caution is advised for certain heart conditions), it helps severe asthma attacks, it can save a life. Now I understand. Now, we have our own tales of near misses to share, causing people to look at us the same way.
Our son has asthma. Each time he was exposed to an allergen in the past, he had a sudden, severe asthma attack. Mind you, those exposures were mostly caused by his allergens being cooked in the same room, not by ingestion. The two times he got a sip of milk as an infant, he also threw up violently and immediately. Each of those reactions was turned around with antihistamines and albuterol.
When he was 7, a cheese slice touched his food. He didn’t eat the cheese slice – it just touched his food. Sudden asthma attack. Albuterol and antihistamines barely made a dent this time. We rushed him to the doctor where he was given a shot of epinephrine and steroids. We had an EpiPen with us – we didn’t use it because we were looking for more than asthma. Big mistake. We were lucky his symptoms turned around.
Flash forward five years, with no reactions in-between. In the back of our minds, we were silently wondering if he might be outgrowing his allergies. He outgrew several by age 5; maybe the allergy tests were wrong? That turned out to be wishful thinking. A few months ago, we gave our son a new product that was dairy/egg/peanut free, or so the ingredients indicated. He took a few bites, and then left the room. Being the paranoid, overprotective, cautious type, I followed him. He took a few sips of water, and complained that his throat was bothering him. So was his stomach. That was all, nothing more. No asthma, no noticeable swelling, no throwing up.
I had that nervous feeling that only a parent raising a child with food allergies can understand – it’s sickening. I reread the label on the product about a dozen times – no allergens. But he was not behaving right. Where was his asthma? It had always been our early warning sign, but this time, his symptoms were different. So, being an educated person, I gave him the EpiPen anyway, right? Wrong. But we did take him to the ER.
At the hospital, they looked at me like I had a second head. The child didn’t appear to be in much distress, no asthma, blood pressure was fine, a bit of throat stridor, and he was moaning and sighing and his voice was funny. I handed them a copy of his emergency allergy plan, and explained our history.
So they gave him epinephrine immediately, right? Wrong again. Although I asked them to several times. (Where was my parenting skill? Why didn’t I just give him the shot I had in my purse?!) They took our son in the back where some doctors and nurses surrounded him and stared at him, pondering their next move.
Suddenly, our child’s symptoms exploded. He threw up violently, filling five containers, getting it all over him and a few of those around him. His throat closed. They ran for the EpiPen, and injected him immediately. They put in IV’s and started steroids, more epinephrine, and antihistamines. He was traumatized, but his symptoms improved and he fell asleep while we stayed there for hours, monitoring him.
We contacted the manufacturer later, to find out what might have been in the food that wasn’t on the label. They happily told us their plant was peanut-free. Yes, but what about dairy or egg? “No, no, we’re dairy-free too.” Egg? “Oh, egg is everywhere. High probability there was egg cross contamination. Is that a problem?” Unfortunately, yes, since our son is severely allergic to eggs. It seems that many people, including some manufacturers, don’t understand that other food allergies can be just as severe as peanut. That takes us to last (American) Thanksgiving. The extended family was gathered around eating dinner. My son took a few bites, got a funny look on his face, and said he wasn’t hungry. That nervous feeling started to grip my stomach … not again! We excused ourselves from the table, since he is now at that age where he is private, and doesn’t want a fuss. He said his throat felt funny, but he only ate some corn and potatoes. I ran into the kitchen and rechecked all the labels. Nothing.
I looked at him and his upper lip was starting to swell. This time, I told him, we’re going to use the EpiPen. He looked at me like all kids do when you tell them they’re going to get a shot. Then, to my surprise, he asked me to hand it to him. He wanted to do it himself. He did it flawlessly, holding it in place for the slow 10 second count, with a big smile on his face. It didn’t hurt, and he knew that what he had done was brave and mature.
We went to the hospital. This time, no drama, no IV’s. They gave him steroid pills, which he was able to swallow, and monitored him for a few hours. That was it. Because we (he) acted quickly this time, he was spared more trauma and misery. We left after a few hours and rejoined our family. It turned out there were two batches of potatoes, one with milk, the other without.
The lesson in all of this? Take food allergies seriously and do all you can to prevent a reaction. Read labels and avoid cross-contamination. Even with all of this, accidents will still happen. When they do, act quickly, and use the EpiPen immediately. As our son recently proved, it’s so simple to use, even a child can do it.
Kathy Lundquist lives near Buffalo, New York and is a member of the Food Allergy & Anaphylaxis Network’s Speaker’s Bureau. For more information, visit www.foodallergy.org or call 1-800-929-4040.
A Letter from Kevin
The following is a letter that Kathy’s son, Kevin, wrote in response to a question from another child about his experience.
Hi Curtis, The EpiPen didn’t really hurt. I felt better right away and I didn’t throw up. I was a little afraid to take it, but I wanted to do it myself. I don’t know why. If I get an allergic reaction again, I would not be afraid to use it. You should use it right away, because the longer you wait, the sicker you get. You should try practicing it with a play EpiPen. If you eat the wrong food, sometimes you can feel it in your throat. The last couple of times I had an allergic reaction, I always felt it in my throat. I can’t describe it, I just know how it feels. I had a little bit of a hard time breathing both times, too. Sometimes if you have the EpiPen and you have an allergic reaction, you should not be afraid to use it – then go to the hospital and get some steroids. They taste bad if you don’t swallow them fast, but they help you feel better too. Drink something you like to swallow them easier. You can leave your clothes on – the shot goes right through and you don’t get embarrassed from taking them off. After you take the EpiPen, you should put a Band-aid on where you did the shot.
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