Monday, September 7, 2009

Voyages with the Hyper-Sensitive

My son, Castor, and I share many bonds. Our eyes are the same color and shape. He also has my nose (although it looks better on him). We both adore reading and music. Although my tastes are a bit more mature, we both enjoy a good literary romp with Dr. Seuss or a tune with Julie Andrews. As early as nine months old, Castor was plotting to steal my beloved iced tea and he’s recently taken to absconding with my chai tea lattes. We both are in a quest for fairness, although my hope is more for global compassion for one’s fellow human and animal whereas Castor’s is seeking train-sharing equity. Castor would like to marry a good bowl of Aunt Scully’s popcorn and have its babies, if he could. Hopefully, popcorn is into non-exclusive relationships because I have designs on it as well. He is my first-born - coincidentally, I’m also his first mother. Castor is one of his dad’s biggest fans, but at this point in his life, he’s still my Mini Me.

We also share allergies, although he’s worse off. Whereas I exist with the knowledge that the pollen Mafia has a seasonal hit out on me, Castor’s little body is in perpetual war with almost all nuts and sesame seed. If I drug myself heavily and live like a Morlock for four or five months, I might survive the year in minimal agony. But Castor (and us as his parents) have a year-round struggle against nuts and seeds of all kinds.

To be honest, we have it pretty easy relative to other families whose children have dietary allergies. Whereas some children would disintegrate into a non-breathing, swollen pile of goo at the merest inhalation of peanut dust, Castor needs to actually ingest it. In our home, we have a bottle of sesame oil and peanut butter on our highest kitchen shelf. I’ve been known to have a little sesame vinaigrette dressing on my cucumbers with Castor sitting next to me, and nothing terrible has occurred. In fact, we do some of this intentionally. Based on what we’ve read, it doesn’t seem like putting a child in a hypo-allergenic bubble reduces his or her sensitivity, but there is some evidence that extremely limited exposure (generally under medical supervision) can at least ensure a child will build up a modest immunity to small amounts of their respective Kryptonite. While we’re not participating in any of those clinical trials underway, we practice this a little at home – not by allowing Castor to eat any of the foods, but by allowing the occasional chocolate covered pistachio in the house or letting him eat Honey Nut Cheerios (made with almond meal, and almond being the only nut to which he is not allergic).

This is actually how we learned of his allergy. One night, I was tossing back a few chocolate-covered pistachios for dessert when I gave Castor one to see if he’d like it. Within minutes, he was vomiting and a half hour later, his stomach resembled the scaly underbelly of a Gila monster. Even after a dose of children’s Benadryl, Castor resembled a victim of the mumps. A later allergy test confirmed what we’d observed: anaphylaxis to nuts. When six months later, he had a bite of his dad’s noodle dish and grew lips that would make Angelina Jolie envious, we had him retested and added another item to the list: sesame seed and its oil.

Fast forward to today: We have four Epipens available at all times (1 for home/backup, 1 for car/travel, 1 at school, 1 at after-care). We’ve yet to use one and every year we need a fresh set of four. Health care system abuse watchdogs? Meet the Willowbottom family, wasters of four Epipens a year. But, what is the alternative? Based on everything we’ve read and learned from the experiences of others, there will someday come a time when Benadryl won’t cover it and that adrenaline shot will be what makes the difference.

There’s a lot to be said for preventative care. Ideally, neither Epipen nor Benadryl will never be used because a child’s exposure will be eliminated. That’s a happy thought, but impossible in reality unless you live in the bubble that (in my opinion) parents ought to strive to avoid. So we do the best we can: we keep those verboten products on the top shelf, we let Castor go to school with other children realizing there is risk, and we go out to eat occasionally.

It’s actually that last activity that prompted this post. During a recent road trip, we stopped at a restaurant for a quick bite on the long trip home. I ordered the easy dishes first (husband’s and mine, no alterations needed). Then, I ordered both kids’ dishes. Even though Pollux doesn’t have any identified food allergies, we realize the boys often share cutlery and food so we try to keep them both allergen-free.

Me to cashier: “Is there any nut or seed product in any component of the kids’
rice/noodle bowls?”

Cashier: “No, just noodles, rice, tofu, and vegetables.”

Me: “What about the oil used to cook it? Any seed or nut oils?”

Cashier: “No, we normally use a spicy oil with a bit of pepper in it but no nuts or seeds.”

Me: “Is the oil derived from nuts/seeds or is it like a soy or canola oil?”

Cashier: “It doesn’t come from nuts or seeds.”

Alrighty then. So I complete our order, the meals, kids, and husband come to the table and we dive in. About 10 minutes into it, Castor complains of his throat being “spicy” (translation: tingly and itchy). A tummy inspection shows clean skin but his eyes are a little bloodshot. Fatigue or exposure? Tough to tell. We wait a couple minutes until it’s clear that it’s definitely exposure. An Epipen is always our last resort and only if there’s clear evidence of breathing difficulties. Swollen eyes and lips, splotchy skin, whining not related to brotherly torment, and that’s cause for Benadryl.

Within moments, it’s obvious that Castor has ingested something to which he’s allergic. Husband goes to the car to hunt for the Benadryl and I go up to cross-examine the cashier. She had previously assured me no nuts, seeds, or their byproducts were in their food so this episode could be evidence of a previously unknown food allergy.

Me to cashier: “Hi, remember when I asked you about the nuts and seeds and
nut/seed oils? Can you tell me what else is in those dishes?”

Cashier: “I can’t tell you everything that’s in them because it’s our proprietary

Me: “Well, I don’t plan on selling your recipe or making this dish at home. My son has had an allergic reaction to something and I need to figure out what was in that dish.”

Cashier: “I really can’t tell you because that is our company’s recipe.”

Me: “If I need to take my son to the hospital, I need to know what he ate. Who can tell me what was in that dish?”

Cashier: “Cooper,” gesturing to the line cook, “come here.”

Cooper: “What d’ya want?”

Cashier: “Just come here.”

Cooper: “Are you going to sexually harass me again?”

Cashier: “You know you like it. Just come here.”

Cooper: “Okay, I’m coming over but only because I like it.”

[Author’s comment: While it was delightful to watch their 20-something pubescent flirting, I had a son being carried to the car who more closely resembled a blow fish than a child.]

Cashier to Cooper: “Can you tell this lady what is in the kids’ noodle and rice

Cooper: “Uh, no. That’s our proprietary recipe and we can’t tell people what’s in it.”

Me: “Look, my son is having an allergic reaction to something that was in that dish. I’m clearly not looking to replicate it. What are the ingredients?”

Cooper: “Well, there’s soy sauce, walnut oil, sesame seed…”

Me to Cashier: “I asked you specifically if there was either nuts or seeds or their oils in their dish and you said no.”

Cashier (smiling): “I’m sorry. I didn’t know that.”

Me: “I’m sure you are sorry but I asked you an important question and my son is allergic to both nuts and seeds.”

Cashier: “Well you didn’t tell me he had an allergy. If you had, I would’ve asked.”
With crystal clarity of thought cradled in a red sea of rage, I clean off the table, collect my other son and things, and go to the car where husband awaits with my puffy-faced son. We stuff him with a double-dose of Benadryl, flip a U-turn, and head back to the highway home to see how far we can get before he begins vomiting (answer: 89.1 miles).

The final rub? When we did the U-turn, we saw the back side of the restaurant’s marquee which proclaimed in bold black letters: “We don’t use nuts or seeds in any of our dishes!”