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

In the beginning...

Things started out pretty well. We had a beautiful baby who was very healthy, not overly fussy (for an infant) and really had no issues that were alarming. There was the occasional eczema patch and the one incident with full body hives after using a new lotion (I rack my brain now to remember what I ate that day), but everything else was normal. I remember checking my daughter into the nursery at church for Mom to Mom and being surprised at the question, "Does your daughter have any allergies?" I happily answered, "No, but thank you for asking!" Then I felt sad for those who had a different answer. I saw an episode of Dateline, or one of those news shows, when I was in grad school 10 years earlier. The story was about a child who had died when the babysitter made a PB&J for one child, wiped off the knife and made a different sandwich for the allergic child. The residue from that knife was enough to cause an anaphylactic reaction in that child. He died. I never forgot that story and the horror and confusion I felt as I realized that food could kill.

Skip ahead with me to the day our idyllic existence was shattered. (If only we had realized and appreciated how spontaneous and fun our life had been!) We went out to dinner. We still did that back then. My daughter was about 13 months. I had not given her a ton of table food, but she had a widely varied baby food palate. We had pizza for dinner and tiramisu for dessert. My daughter ate her own food for dinner, but we decided that we would let her have a small taste of the cream from our dessert since she had had dairy before. She took a bite and refused another. Then she started rubbing her eye. We didn't really think anything of it at first. We were paying our bill when we noticed her eye looked funny and she had a couple hives on her face. I knew right away what was happening. I remember asking the people at the host stand if they had Benadryl as we rushed out. I'm not sure why I thought they would. We got in the car and headed toward the nearest hospital as I called the 24 hour emergency line for the pediatrician. They asked me about trouble breathing and if this had happened before. The hives were moving around her face and her right eye was pretty swollen, but thankfully nothing else was happening. When we got to the ER, they did an intake pretty quickly and took my daughter's BP and had us wait in the waiting room. The swelling was a little better, but those hives were still traveling. It was very bizarre. We got called into a room, and it was at least 45 minutes before we saw a doctor and we were given Benadryl. The hives cleared up very quickly after that. The doctor confirmed that it was most likely an allergic reaction and suggested we follow up with our pediatrician to try and figure out what my daughter reacted to. We were released shortly thereafter. It did not seem like the ER doctor was overly concerned.

The next day we followed up with the pediatrician. She told us that she was going to prescribe an EpiPen because "that was actually a pretty serious reaction." I remember being surprised by her saying that. The ER doctor was really not that concerned. It seemed like we just needed Benadryl to stop a reaction. She explained to me that reactions can be worse each time. We discussed what could have caused the reaction. She said that raw eggs are often in the cream of tiramisu. I had forgotten about that. She sent us to the lab for blood tests for egg, dairy and chocolate and called a couple days later with the results. Eggs. It didn't make sense. My daughter had eaten a few things with eggs in it, but she told me that some people with an egg allergy can eat things with eggs as a baked ingredient. We would need to avoid raw or undercooked eggs as well as straight up eggs. I was bummed about my daughter not getting to experience the joy of raw cookie dough (I know, I know, probably just as well) and was a little freaked out, but relatively ok. We were advised to avoid peanuts and tree nuts since there was an increased chance she could be allergic to them. I was thinking that our instructions were relatively simple, but I began to realize that raw and undercooked egg could be found in things like salad dressings and condiments. It occurred to me that I had to be careful when making eggs for my husband and myself. I was beginning to realize there was more to this than I thought.