Learning Curve

I think that most families who get thrown into the food allergy whirlwind experience a pretty drastic learning curve. For some of us it is gradual and some are thrown into a fast curve through mistakes that have results ranging from disturbing to drastic. Misinformation from doctors, even allergists, can slow the learning process.
We began our awareness with the egg allergy confirmed by our pediatrician. We actually had a great pediatrician at the time who understood allergies, but she did not suggest we see an allergist, so it never crossed our minds. We carried the EpiPen with us, as instructed, but we were terrified of it. Benadryl had been the only medicine administered at the ER, so that was the go-to drug in our minds. I realize now how lucky we were.
Things went pretty well for a couple months after the diagnosis. Then there was an incident at a party where my daughter was eating the pretzels out of a chex mix where we noticed she was getting hives and some minor swelling. We gave her Benadryl and quickly left the party and watched her. Luckily she was fine after that. Shortly thereafter was the dinner at Olive Garden. I was a little more aware, and I spoke with the chef about the food. We told them of the egg allergy and that we were avoiding peanuts and tree nuts just in case. We settled on plain pasta with olive oil for my daughter. When the waitress asked if she wanted freshly grated parmesan cheese, we said yes. A couple hives on her lips and a fast departure later, we realized that the grater had likely touched the house salad dressing that is made with eggs. Again, Benadryl was our friend.
Then came a scary one...
We had driven about 5 hours to a friend's house and arrived just prior to her daughter's first birthday party. We were spending the night, so we had a suitcase, but we decided that we should just grab that after the party. After saying hello to everyone, I caught a glimpse of the cake. Since I had been decorating cakes for fun since 4th grade, I knew this frosting did not look like American Buttercream. I asked my friend what was in the frosting, and she told me it was made with egg whites and warm corn syrup. I told her that my daughter could definitely not have that, but we would just give her something else at cake time. This was back in the days before the thought of kids covered in my daughter's allergens sent me into panic mode. I was pretty calm. Everyone ate lunch, and my daughter ate the food I brought. (I at least knew to bring along guaranteed safe food back then.) We sang "Happy Birthday" to the birthday girl, and I went about preparing a safe dessert for my daughter. I probably had my back to her for 2 minutes. That's all it took for a well meaning adult to give my daughter a piece of cake. My friend's mother overheard my earlier conversation and alerted me to the fact that my daughter was given the cake. It was too late; she had taken a bite. I was a little panicked, but I said, "They told me that kids usually outgrow the egg allergy, so maybe she will be ok." As if on cue, the projectile vomiting started and hives began to pop up all over. My daughter was nearly two, but she was very healthy and I had never seen her throw up before, let alone projectile. I yelled to my husband to get the EpiPen that I suddenly realized was left in the car. He didn't answer. My friend had some Benadryl, and we gave it to my daughter. Minutes later the vomiting stopped and the hives began to subside. My husband, who had been unable to come when I was calling, now showed up with the EpiPen, but she was looking normal again. I was shaken up but kind of happy that I hadn't given her an unnecessary jab with the EpiPen. I called the doctor's 24 hour line and left a message for nurse triage. We put my daughter in the tub to clean her up, and I got a call back from the nurse. She said to give the EpiPen NOW and call 911. She said my daughter was very allergic and even a molecule could kill her. She said my daughter could start reacting again. She scared me to death. I hated her. I told her that my daughter looked completely fine now and the nearest hospital was at least 20 minutes away. She said that I had to watch her and give her the EpiPen if anything else happened, and I had to give Bendryl every 4-6 hours for 24 hours.
I hung up the phone and cried and rocked back and forth. The phone rang again. It was a different nurse who did not know that the call had been returned already. He said I did not need to give the EpiPen if she was fine now, but I did have to watch her. I liked him better. I stayed up all night and watched my daughter and dosed her with Benadryl around the clock. Thankfully, she was fine.
That first nurse's words rang in my head and still do most of my waking hours. I hated her so much. I blamed her for the anxiety that developed since that day (more on that another time). It is really only very recently, since Natalie Giorgi's death, that I have grown to appreciate her. She was right. We were experiencing anaphylaxis. Two systems were definitely involved. Anaphylaxis is actually extremely common. Fatal anaphylaxis, thank God, is not. The kicker is that there is no way to know what you are dealing with. If you wait too long, it may be too late. Benadryl will not stop a fatal reaction. It just won't. An EpiPen can, most of the time, pause a reaction until you get to a hospital for appropriate treatment IF it is administered early enough. Additional doses may even be necessary to keep that reaction at bay.
I am willing to bet that most of us are extremely fortunate that all anaphylaxis is not fatal. I would be telling a much different story if it were. God grants us mercy on this. Out of His mercy, we must be willing to learn and prevent a future tragedy. EpiPen first. Always.
To learn more on the signs of anaphylaxis, please check out this great reference page. Six That Save Lives