At 3 ½, Zax was getting ready to go to preschool, and I
decided it was time for us to know more.
Specifically, I wanted to know two things:
- Could he tolerate egg in baked items? (Many egg-allergic people can.)
- 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 (see Zax's story part 1). 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 this summer. Foods are on the right, egg and peanut are the top two and Brazil nut is the third |
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.
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