But I was wrong.
Last week we all went to Colorado while I attended a work-related meeting. We flew Southwest which serves peanuts on the flight, along with another snack. Of course, we didn't give Mitchell the peanuts, and he did find on the way out. But on the return flight, he started getting itchy legs soon after the peanuts were served. We looked for bug bites, then my husband realized that it was probably a reaction to the peanuts.
I had a small first aid kit that a couple of items with lidocaine, which we tried but didn't help much. We asked the flight attendant if they had hydrocortizone or benadryl, which they didn't. They seemed surprisingly unfazed when we said he had a peanut allergy. One mentioned that I could ask them ahead of the flight not to serve peanuts, but otherwise didn't seem at all prepared to deal with any sort of first aid or worse emergency. I'm not sure what would have happened if he had a more severe reaction. (I had 3 epi-pens which theoretically would give us 45 minutes to get him to an ER.)
A woman suggested an ice pack, so we used that and it helped a little. It was mostly his legs, but occasionally he rubbed his eyes and other places on his face, which made it a bit scarier. It was a very long 2 hours, and it didn't help that our younger kid was quite restless too.
My husband figured getting him off the plane as soon as possible would be best, so we asked a flight attendant if there was a way to get off quickly. She moved the two of them to seats at the front of the plane as we were getting ready to land so they could get off first. We landed after 11 pm so nothing was open in the airport.
After we got our bags, we stopped at a gas station and gave him two types of histamine blockers. Halfway home, we stopped at a WalMart to buy a pulse oximeter to monitor his heart rate and oxygen since he fell asleep in the car, occasionally scratching. When we got home, we gave him a bath to wash off any remaining peanut proteins, slathered him in hydrocortisone creame, and gave him some benadryl and steroids.
We continued to worry that he could still have a bad reaction and were afraid to go to sleep. We thought about monitoring occasionally with the pulse-ox, but one time his heart rate went up from what it had been. We tried calling our allergist, but he doesn't really do overnight call. I knew he would tell us to go to the ER, so we did (at about 3 AM).
The ER doctor was mostly concerned about the way the rash looked on his arms. Since we had been hiking in Colorado, there was some discussion of Rocky Mountain Spotted Fever. The typical MO for kids in the ER is to run every test possible to make sure nothing is missed. So he had a chest X-ray, he peed in a cup, and they wanted to put in an IV to get blood work and then have access for giving medicine later.
Yeah, putting an IV in a 5 year old who is already afraid of getting shots is interesting. The nurse was really nice and tried to make him calm by showing him everything she would be using and talking about everything. He was really brave as she put the needle in his arm, then kept asking when she was going to take it out. Unfortunately, the needle went through the vein, so then we had to tell him that he would have to do it over on the other arm. He bawled and said he wanted to go home.
My husband held him and said that we couldn't go home until we got his blood for the tests and finally convinced him to try again. Another nurse came in to do the needle this time. We were all around him, trying to calm him and take his mind off what was going on. This time it worked and he watched as they collected several tubes of blood. They taped and wrapped it up so he wouldn't mess with it. The nurse gave him a stuffed animal for being so brave and he went to sleep.
The labs trickled back. My husband and the doctor discussed that we could have him admitted if we wanted or could go home if the labs were all okay. So he decided to go home and take a shower while we waited for the rest of the labs, then come back and take a nap at the hospital until he started his 12 hour shift for the day. I sat on a chair next to my kid's bed and leaned forward to lay my head on the pillow next to him to try to sleep.
They gave him a dose of antibiotics through his IV and an oral dose of an antibiotic that fights the Rocky Mountain Spotted Fever. When the labs had all came back, the doctor gave me the choice of admission or going home, and we chose to go home.
My father in law had gone with us on the trip and was at home with my youngest kid and watched the kids after we got home so I could get a few hours of sleep. It's hard to recover from an all-nighter at this age!
While we're on this subject, I'll post an essay I wrote about the peanut allergy last year. I had submitted this to my favorite magazine, Brain, Child, which, unfortunately, is closing shop (and interestingly includes a debate about nut-free schools in the final issue that I received today), but they did not select to publish it. I wrote it after reading an essay in that magazine called "Sweet Somethings" about getting treats from the ice cream man. The same day I read that article, an ice cream truck came by. At the time, I hadn't checked to see whether there was anything peanut-safe to get, so I worried about taking my kid to the truck only to find we couldn't get anything. As he has gotten older, he understands his allergy and that there are limits on what he can eat. He generally asks if there are peanuts (although doesn't always understand possible contamination or when there's no label to check). And we have checked and eaten ice cream from the ice cream man!
I heard the tinkling music briefly in the distance, but I pretended not to notice. I hoped nobody else had heard it. Jason was busy riding his tricycle up the street and Mitchell was talking to Sean, so they didn’t seem to notice. I breathed a sigh of relief that included a twinge of disappointment.
“I heard the ice cream truck go up the other street!” Evan, the neighbor kid, had noticed. Now I hoped Mitchell hadn’t heard what he said. I tried to talk quietly, “Mitchell probably can’t get anything from there because we don’t know if it has peanuts in it.”
“I’m going to go see if I can catch it.” Evan ran off down the street. Luckily he didn’t say anything more and Mitchell didn’t notice that he took off. He returned shortly, realizing that the truck had headed away from our street.
Ice cream trucks, ice cream parlors, cake at birthdays and weddings, trick or treating at Halloween, neighborhood Easter egg hunts, entire tables of desserts at pot-lucks. There are many things that I took great pleasure in as a child, and some that I still do, that I have had to keep Mitchell from because he has a peanut allergy. For most of these, he doesn’t realize what he’s missing out on, so it hasn’t been too difficult. There has been the occasional party, wedding, or church pot-luck where he has seen the treats that he can’t eat, but I usually have an alternative treat for him.
We first discovered Mitchell’s peanut allergy when he was 17 months. I was eating a PB&J sandwich and gave him a bite. Soon after lunch, we got in the car for a short meeting that I had with a colleague. While we were at her office, he sneezed a couple of times. Because it was one of the first nice days of spring, we went outside and he continued sneezing, repeatedly. After the meeting we got in the car. Mitchell fell asleep, but sounded completely stuffed up, breathing noisily through his mouth. That evening I mentioned to my husband, Sean (an internal medicine doctor), that Mitchell must have pretty bad seasonal allergies and I described his profuse sneezing. He replied, “He can’t have seasonal allergies yet, he had your immune system last year.”
My heart sank when I remembered, “I did give him a bite of peanut butter today. Is sneezing a possible allergic reaction to peanuts?” We jumped on the internet, hoping that it wasn’t, but found that allergic reactions to peanuts could manifest as a multitude of different symptoms, including rhinitis.
The next day I made an appointment with an allergist and cleaned out all of the items with peanuts from the kitchen. Sean gave me detailed lectures on endocrinology and how doctors think allergies develop. If your body decides a certain protein is harmful, it creates an antibody against it. This can happen at any stage of development, including in utero. I thought back to all of the Snickers bars that I had eaten during the twice-weekly non-stress tests that I had leading up to Mitchell’s birth, and the PB&J sandwiches and Massaman curry that I had eaten while breastfeeding him. I felt like I had ruined my child.
When we finally got to see the allergist, I told him the story. He tried to be comforting, “We’ll test him, but I don’t think he’s going to have a peanut allergy.” They pricked Mitchell’s back in three places: one with peanut protein, one with histamine that would definitely react, and one with saline that should have no reaction. Then they told me to keep him from scratching his back for twenty minutes.
What? Keep a toddler from touching his back that itches for 20 minutes? We went back out to the waiting room, Mitchell shirtless, and I tried to keep him occupied with crayons or looking at things in the room, but not leaning against a chair or the wall, or scratching that itch on his back. And not only was the histamine spot red, but I could see the peanut spot turning red too. After twenty long minutes, we were called back into the room where the nurses measured the size of the red spots with a ruler. The allergist came back in and told me what I already knew.
The allergist told me that only a small percentage of kids outgrow peanut allergies, that there were trials in progress to desensitize kids to the allergen but they weren’t ready for mainstream use (one child in the trials had recently died!), and showed us how to use an Epi-pen with the tester.
“Take off the cap and stab it into his thigh, then you have 15 minutes to get to the ER. Make sure you don’t put your thumb over the end just in case you get flustered and have it upside down-you don’t want to stab your thumb and waste the Epi-pen. Don’t leave the Epi-pen in the car-it can’t get hot or cold.”
He wrote a script for four Epi-pens so we could keep some at home and some at daycare. When I went to pick them up, the pharmacy had only filled two. “Your insurance doesn’t pay for these and we weren’t sure you would want to pay for all four because they cost $160 for two.” Yikes! I bought the two they had and later called the insurance company and was told the only injectable they cover is insulin. Sean wanted to call them to ask if they would rather pay for intensive care, but knew after many phone calls to insurance companies that it would be a waste of his time and breath.
On Christmas Eve, a month after Mitchell’s second birthday, I went to the pet store to get dog food and treats. While I was picking them out, Mitchell was walking around nearby. He came over and I saw he was chewing something. First, I worried that he would choke. I started to grab the pieces from his mouth, but realized he’d already chewed it up and would be able to swallow it fine. Then I remembered seeing many dog treats with peanut butter in them.
I quickly went around the corner where he had been and found a display of open bins with dog treats. The two flavors on the bottom row were chicken and peanut butter. I frantically asked, “Which box did you get that from?” as if a two-year old would answer that. I didn’t want to freak if he’d eaten the chicken-flavored one. What could I do?
It occurred to me to smell his breath-definitely peanut butter. I quickly bought the dog food, got in the car, and headed straight for Sean’s office, adjacent to the hospital. I tried paging him, but he didn’t return my call. He must have been busy with a patient at the hospital. I could see in the rearview mirror that Mitchell was rubbing his eye. It was turning red and swelling up.
When we got to my husband’s office, I found him chatting with his office manager. “Why didn’t you answer my page?” I was pissed, as if he knew that this page had been an important one. He gave Mitchell some Benadryl and steroids and we kept an eye on him while he played in the office, just a few steps from the ER in case it got worse.
We didn’t use the Epi-pen. The thought of stabbing my child with a needle freaks me out. Sean has shown me the studies that show the statistics of better outcomes when using the Epi-pen, although he wasn’t reaching for it either. Okay, next time, we’ll definitely use it, we told ourselves.
When our first set of Epi-pens expired, I tried one out on an orange, as suggested by others on the peanut allergy message boards. The spring action that ejects the needle upon pressing the Epi-pen against the flesh sent a surprising jolt through my hand. I pulled it away from the orange to reveal a needle over an inch in length. Sean was surprised at the gauge of the needle. It seemed big enough to pass right through my child’s precious little thigh.
One afternoon when Mitchell was three, he was playing in our backyard. I looked out the window to see him sitting in the grass by the fence and I hoped he wasn’t sitting in a pile of dog poop. A few minutes later, he was still sitting there so I went out the door to ask what he was doing. “I found chocolate!”
I thought, “Holy crap, he’s eating dog poop!” and ran out to him. There in his lap was a plastic Easter egg and chocolate wrapper that he had found on the fence. The neighbors had had an Easter egg hunt and that one must have been overlooked. So then I had to worry whether that piece of chocolate had peanuts in it. What’s worse to eat-dog poop or a protein that could send you into anaphylactic shock?
Now at age 4, after much discussion and multiple readings of Allie the Allergic Elephant, he understands that eating peanuts would make him sick, and he often asks whether foods are safe. The difficult part is when someone tells him that there aren’t any peanuts in an item, not realizing that we avoid all items from bakeries because they all have the “may contain peanuts” warning.
I also usually avoid giving him items baked by other people unless I’ve had a detailed conversation with them about the ingredients in those items and any other items baked at the time. One Christmas, my sister-in-law baked several things and brought them to share, including peanut butter fudge and a cupcake made from a mix carefully checked to not include peanuts just for Mitchell. When he ate the cupcake, his face turned red. It was likely that peanut from the fudge had contaminated the cupcake, either during the baking or in transport to our house.
For now, it is relatively easy to keep him from peanuts. He attends a peanut-free preschool where one of the teachers has a peanut-allergic child, so she “gets it.” Otherwise, food is only given to him by a limited number of relatives and our nanny. I know that someday soon, he will have to become his own advocate and make smart choices about the foods he eats. Hopefully, nobody will ever have to stab an Epi-pen into his leg.
The day after I heard the ice cream truck, I was sitting in my office and my eyes rested upon one of several comics that I have taped to the wall. It is a Far Side comic of several scientists running out of the lab to the ice cream truck that can be seen through the window, leaving a beaker on the bench and unfinished equations on the chalkboard. That’s me in a nutshell.
I have to remind myself that there are other simple pleasures in life that I can share with Mitchell, and lots of tasty foods that are safe. Maybe someday he’ll even beat the odds and outgrow his allergy, or the desensitization tests will become a regular treatment. Until then, we’ll be sticking to soft serve ice cream cones, handing out peanut-free candy at Halloween, and hunting for Easter eggs in our own backyard.