Zax’s Food Allergy Story

(Originally posted in two installments (1, 2) in October of 2014.)

Zax came into our lives in October of 2008. He was a wonderful baby and, apart from a bit of eczema, was pretty healthy. Because of my own allergies (and particularly having heard the story of my own first experience with egg) we were very cautious about introducing new foods to him. We introduced one food at a time, spaced four days to a week apart, and watched carefully for any signs of allergy.

Things went fine until he was about 10 1/2 months old. I purposefully scheduled Zax’s first taste of scrambled eggs on a weekend when my husband would be home to keep me company. I also introduced the egg well before his first birthday, because there was no way his first exposure was going to be in his birthday cake. I wanted to know beforehand.

It's very hard to get a picture of red, blotchy skin

It’s very hard to get a picture of red, blotchy skin

After a handful of bites, we began to notice that something was wrong. Zax was fussy, more so than with previous foods he simply hadn’t cared for, and was rubbing at his face. We stopped giving him the egg and cleaned him up, including changing his clothes. He was starting to get a bit red at that point, but strangely that ended at the neckline of his shirt, like he was only getting red where he’d gotten the egg on his skin. We monitored him and he gradually improved, eventually taking a nap and having everything cleared up at that point.

We called the pediatrician, who immediately referred us to the Colorado Allergy and Asthma Center. We set up an appointment and took him in.

It later occurred to me how ironic the situation was. I have food allergies, and to be honest I almost expected a reaction from him, yet I didn’t have the slightest idea of what to give him. I’d never browsed the pharmacy for children’s allergy medication, and I’m grateful that his initial reaction wasn’t worse. If he’d gone into anaphylactic shock, I probably would have given him my own epi pen before racing off to the hospital, but fortunately that didn’t happen.

The allergist performed a skin test for the eight most common allergens. Zax bore it well, and didn’t fuss much. His results came back positive for egg, which we expected, and also for peanut, which we did not. The kid had never eaten peanut so it seemed strange that he could already be allergic to it. When I considered my own history of false positives on skin tests, I knew that at some point I would want to challenge the peanut diagnosis, but that would have to wait. Several years, in fact, until he was old enough to speak and mature enough to describe how he felt. For the time being, we would consider him allergic to both egg and peanut.

Even though I’d known he was allergic since the day he ate scrambled egg, I still felt disappointed by the diagnosis. In fact, my first thought when they read the results was “Really? He didn’t get the memo that he was supposed to take after his daddy?” It was short-lived though, as I was already rearranging things in my head, thinking of how to incorporate these new foods into my existing food-avoidance routines.

The staff at CAAC seemed surprised by my attitude. Did I have questions? Not really. This is my normal, just with new foods. I knew that they would be appropriately labeled thanks to the Food Allergen Labeling and Consumer Protection Act. I wasn’t even that concerned about finding substitutions for egg. I figured the internet would tell me everything I needed to know.

They brought in an EpiPen and tester and started to show me how to use it. I pulled out my own and said “You mean like this?” I declined to schedule a follow-up appointment a few weeks later, as they admitted it was just to address questions people encountered as they adjusted to an allergic lifestyle. I did, however, schedule a special appointment for them to test for and administer his flu shot, since the vaccine is incubated in chicken eggs.

Life went on from that point without too much fuss. Zax was still a baby, so we didn’t typically order him restaurant food anyway. Baking without egg proved to yield rather flat results (literally), but things still tasted fine.

We had a few incidents. At 20 months, a second cousin gave him a cookie which made him cough before anyone discovered he had it. At age 2 he stole a piece of pasta that had an egg-laden alfredo sauce, and that time, nothing happened. We hoped that meant he was outgrowing the allergy, but his next annual exam showed that his numbers had not diminished in the slightest.

At age 3, a few months after Kal’s birth, we were at JC Penny taking some family pictures. I had brought along some plain m&ms to ensure Zax’s cooperation and smiles in the photos. While many peanut allergic folks avoid plain m&ms due to their troubling “may contain peanuts” warning, we had had no problems with them. (My relationship with “may contain” products is complicated, and probably the subject of another post.) It was good we had them that day, because we needed a few bribes incentives to get Zax through the pictures.

After the photo shoot, my husband and I were looking at the results while Zax watched the movie in the waiting area. After a while, he came running up to me asking if he could have some m&ms. Knowing that waiting was boring for a 3-year-old, and that we still had a while to go, I said “yes” and reached into my bag for the m&ms. To my surprise, instead of eagerly awaiting my offering, Zax ran off. He went up to a strange woman in the waiting area and held out his hands, and I watched almost in slow-motion as a very fat m&m disappeared into his mouth.

I charged across the room calling “Get that out of your mouth! What kind of m&m is that?” Zax obliged, looking rather shocked at my behavior. The woman looked sheepish as she told me it was a peanut m&m, and, “I did tell him to ask!”

I pretty much ignored her after that, because I was focused on Zax. The m&m he’d given me was still intact, but since those things break in the bag all the time, I figured the candy coating ought to have peanut residue aplenty. How did he feel? Was he doing okay? I didn’t want to scare him, and also didn’t want to guide him towards giving me certain answers, so I started asking all sorts of silly questions alternating with important ones. How did his nose feel? How did his mouth feel? How did his toes feel? His throat? His belly button? His eyes? His tongue? His knees? His chest? He was giggling by this point, and reporting that everything felt fine.

You have to remember that at this point, the peanut allergy was unconfirmed. He had positive test results but had never eaten any. So while I continued to keep a close eye on him for the rest of the day, and asking him how he felt at random intervals, part of me was hoping that maybe the peanut was a false positive after all.

At 3 ½, when Zax was getting ready to start preschool, and I decided it was time for us to know more. Specifically, I wanted to know two things:

  1. Could he tolerate egg in baked items? (Many egg-allergic people can.)
  2. Was he really allergic to peanut?

Zax’s allergist was more than willing to grant him a food challenge for a baked item with egg in it, but she pushed back hard when I suggested we do a peanut challenge. “His skin test is a 4,” she told me. “It’s very inadvisable.” I told her I understood her arguments but asked her to listen to mine. In the first place, I wasn’t comfortable calling him peanut-allergic indefinitely without a clinical reaction. If he wasn’t allergic, there was no point in us living such a paranoid lifestyle. Some people might be content with just test results, but that wasn’t me. In the second place, I knew, not only from the internet but from personal experience that false positives on those tests are relatively common, and since his genes were partially my genes, it seemed plausible that he might have inherited the propensity for them. And lastly I mentioned the JC Penny incident. Yes, it wasn’t conclusive since he hadn’t bitten into the peanut m&m, but since nothing at all had happened I thought it was worth a closer look.

I think it was my final argument that swayed her. Grudgingly, she agreed to the challenge, after wanting me to understand again (and again, and again) that she still advised against it. I understood, and we went forward.

We scheduled the baked egg challenge first, figuring it would be less traumatic if both challenges were positive (and we didn’t want his fears/behaviors to get in the way of the test results.) They asked me to bake something that required two eggs, baked at 350 degrees for 30 minutes, and bring one piece (1/12) of it. A box of brownies did the trick.

The day of the test, we got situated in our allergist’s food challenge room (which, fortunately, was filled with movies and TOYS!) The aides started by checking his vitals and examining his skin. Then they cut the brownie in 1/4ths and fed him them at fifteen-minute intervals. Shortly after he ate his second small serving, he reported that his throat hurt. The aides checked him over and saw no visible symptoms, and then told me that while they weren’t seeing anything, his report told them he was starting a histamine reaction and that if we kept going, it was only going to get worse.

I was surprised that she seemed to be expecting me to push for more, and that she sounded willing to do so if I insisted. “I was done,” I told her. “I’ve felt that feeling, I believed him, and I knew exactly what it meant. All we wanted to know was whether he could tolerate baked egg, and now we had our answer.” They treated him with Benadryl. Then we waited (and played) for observation before heading home.

He later told me he’d started to feel funny after just ¼ of the brownie, but he had wanted more chocolate. He hadn’t wanted any more by the time we called the test quits. Doing the math, that means he was reactive to at least 1/24th of an egg, and had sounded the alert at 1/12th. Not that it matters, but I’m a numbers person.

A few hours and a Benadryl-induced nap later, the reaction came back for round two in the form of a horrible stomachache and diarrhea. While I’ve heard that allergic reactions can cause these symptoms, I’d never before seen or experienced them as part of a reaction to food allergy. My theory is that I, personally, had never been able to ingest enough nuts for them to wreak havoc on my digestive tract on the way out, and Zax never had before either. This time, however, since he’d eaten a significant amount of the egg, it was going to have to go all the way through him. He also reported that his throat hurt again, but a different hurt, and when I looked into his mouth I saw that he had several canker sores. We called the doctor (who said canker sores were possible but rare after allergic reaction), and we re-dosed with more Benadryl and Zyrtec. He had a painful few hours, but finally it was over.

The next step, a few weeks later, was the peanut challenge. I was relieved that the ladies performing the test weren’t giving us any flak that would make us feel like bad parents. We needed to know, so there we were. Despite his reaction to the egg, Zax was thrilled to be back in the food challenge room because it meant he could play with the cool toys again.

The peanut challenge was done more incrementally. The first step would be to rub a dab of peanut butter on his lips, and if nothing happened, we would move forward in larger and larger doses. My husband and I brought along chocolate chips to eat with the peanut butter, in case he didn’t like the flavor on its own.

Once again the ladies took all his vitals, and then they placed a dab of peanut butter on Zax’s lips and rubbed it around like chapstick. He licked at it a bit and said “Mmm!” “Good sign,” I thought. Once again, the ladies said they’d be in the next room if we needed them.

Less than a minute later, Zax was screaming. “NO!” he kept repeating, and saying he didn’t like it. He wanted water. I told my husband to run and get the aides while I carried him to the sink. He tried to rinse his mouth out when the ladies came rushing back. They looked at him and his mouth very briefly, and then whipped out the epinephrine. He was scared of the shot and knocked the aid’s hand away, so she had to stick him twice. After the epinephrine, they also gave him Benadryl, a 24-hour antihistamine, and a steroid that should prevent inflammation. Considering his complications the previous time, they wanted to cover all his bases. We stuck around for another hour, with frequent checks by the aides. Before long he reported that he felt fine, and during their final check he said that he felt good all the way down to his toes.

I wanted to make sure Zax understood what to look out for in the future, so after both of these challenges, once the smoke had cleared but the memories were still fresh, I got up close to him and asked him to remember what he felt like. “Remember hard, so you won’t forget it. And if you ever feel this way again, tell a grown-up.” Even an allergic reaction can be a teaching moment. To this day, if he starts to have an allergic reaction, (and he’s had a few minor ones) he reports that his mouth “feels like egg.”

Statistics say that kids are likely to outgrow egg as an allergy, but Zax is approaching his sixth birthday and hasn’t done so yet. I try not to get my hopes up about that. If he outgrows it (or any of his allergies), great, but if not it just means he’ll become an allergic adult, like me. And whatever happens, we’ll deal with it.

From summer 2014. Foods are on the right, egg and peanut are the top two and Brazil nut is the third

From summer 2014. Foods are on the right, egg and peanut are the top two and Brazil nut is the third

At one of Zax’s more recent allergist checkups, they tested him for all of the tree nuts instead of just a mix. Due to my allergies, he seldom eats them and has only tried a few varieties.  He came back with a smaller (but still present) reaction to Brazil nuts. We have not challenged that one, but I don’t think he’ll encounter them very often. After all, I’m allergic to tree nuts and when I saw that test result, I said “What the heck is a Brazil nut?” Clearly, I haven’t encountered them often either. (Although the Rio 2 movie brought them into better focus for both of us.)

So Zax has been learning how to navigate the world with food allergies. He knows to ask–an ADULT!–whether it has “egg or peanut or nut” any time he’s offered food. He knows that he isn’t supposed to have any if the answer is “I don’t know” or “I don’t think so.” He knows the rule “Never touch food on somebody else’s plate, and never put your food on somebody else’s plate.” He knows that he’s supposed to tell an adult if he feels himself having a reaction. We go over these safety routines on a frequent but irregular basis, to provide repetition and make sure they’re still fresh.

Zax is turning into a pretty good self-advocate. One day in kindergarten he hadn’t finished his lunch, and said it was because he needed to wash his hands so he ran out of time. Then he reported that he had to wash his hands because he accidentally touched his friend’s “egg pie.” I have no idea what the little girl was eating, but I was very proud of him–and told him so–for taking care of himself.

And that’s my highest hope for my allergic child–that he will learn to expertly take care of himself.