So Now We Know (A Food Allergy Freak-out, and Back Again)
January 2, 2011
Kaspar got the clean bill of fat-happy-baby health at his most recent well-visit—our first time meeting with our new doc here in Austin-- despite obvious full-body eczema, which we’ve been “managing” since he was just a few weeks old. “Management”, unfortunately, is the approach that most parents must resort to, or settle with, given a dearth of real solutions; eczema is notoriously persistent, and its causes equally elusive. A pediatric dermatologist back in New York confirmed that it’s itchy, but not dangerous, and that we’d just have to moisturize the lil’ guy and ride it out (most kids outgrow this particular affliction). I’m not sure any mom ever really accepts a situation in which her child is uncomfortable, though, so I’ve continued to research and experiment with endless treatment methods in search of our magic bullet. I’ve tried topical creams of all kinds, probiotics, Omega fatty acids, hazelwood necklaces, salt baths, oatmeal baths, humidifiers, de-humidifiers, soy formulas, and on and on and on. Some things have helped a little, some have made it worse, but nothing has stood out from the crowd as truly effective. So, we’ve “managed” the dry, patchy skin, and continued looking.
Kaspar has, for his part, seemed generally unfazed by his eczema… except for occasional and completely mystifying fits of agitation during which he’s rubbed and scratched at his face so aggressively that I’ve had to hold his limbs down (distressing, to say the least). When this has happened, he’s cried out in inconsolable discomfort that I’ve been unable to alleviate. Aaron and I have just sat there in frustration and wondered “What is this?” aloud.
I’ve asked about these episodes before, too. I’ve explained to Kaspar’s doctor that his skin would look totally fine, but then he’d rub it so aggressively that, within seconds, it’d end up red and chafed. I’ve asked if the face-rubbing in these instances might be a sign of some other discomfort, but “He has eczema,” has been the consistent response. “His face itches.”
Before wrapping things up with our new pediatrician, however, she asked if we had any questions we’d like to run by her. Having already briefed her on our management routine (and briefly described these other symptoms), and not really expecting to hear anything new, I asked if she had any ideas on addressing Kaspar’s eczema. She thought for a moment, and then asked if we’d considered testing for allergies.
We’d been told that food allergies are rare, as a rule, and very infrequently eczema’s cause. But, since we’ve been playing an ongoing guessing game for as long as these “flare ups” have been happening (“Maybe it was the avocado? Maybe it’s dust? Maybe it’s the cold? The heat?” Etc.) I was finally game for a little blood draw. At the very least, we could rule out the usual suspects. I hoped, though, that we might even hit upon something. Dairy’s doing it? Great—nix the dairy, problem solved. Dust? Fine, let’s clean daily. Whatever it takes. This no-man’s-land thing was getting old, and waiting it out wasn’t working for me. I wanted answers.
As a short side, syringes freak me out. Yes, I have tattoos (I know, I know…), but I cry like a baby when I get blood drawn. The idea of someone drawing blood from Kaspar’s arm makes me downright dizzy. But, as these weird face-rubbing fits recurred, I came to the obvious conclusion that a four minute needle stick would pale in comparison to this ongoing, mysterious discomfort. It was worth trying. I steeled myself, Kaspar took the blood draw like a champ (I seriously wish we’d done this sooner), and then we waited to see what turned up.
It took five days for the lab to run its tests. I got the call back on Christmas Eve, as soon as the results were in (I’d been harassing the receptionist with daily inquiries).
“Well, he’s definitely got some allergies.” Our ped said over the phone.
Aaron and I had talked ourselves over to the ‘happy just to rule things out’ side of the line, so this was better news than I’d expected. I was going to have something to work with, something tangible with which to solve this problem. “Lay it on me,” I said.
“Well…,” our doc continued. “There are four levels here, in terms of how allergic people are to various foods or substances. Low, moderate, high and very high. Very high is a seventeen. Kaspar got a sixty-seven on cat dander.”
“We have two cats.”
“There you go.” She said.
“Okay,” I said. “We’ll have to find them a new home. That’s... really good to know. Wow.”
“There’s more,” she said.
You ready for this, readers? Kaspar also cleared that very high marker four times over on wheat, soy, corn, peanuts, walnuts, and egg whites.
“Um, holy sh*t.”
“I’m going to call a prescription for an Epi pen into your pharmacy. If he shows any signs of difficulty breathing, use it.”
“Right, okay.” I said.
“Let’s talk on Monday, and I’ll give you a referral to an allergist.”
“Okay, cool,” I said. “One question… is Kaspar one of those kids who can’t be in the same room as peanuts? Is that what we’re dealing with here?”
“You’ll have to kind of see how he does to know. That’s pretty unusual. Most kids grow out of their allergies, too. You’ll monitor it, and time will tell. But, don’t worry. Have a good Christmas!”
After hanging up, I delivered the news to Aaron. We talked about what to do with the cats, and started piecing together some of the past months’ mysteries-- adverse reactions to certain lotions, face-rubbing fits following Kaspar’s first forays into soy pudding and polenta. But, over the next several hours, our “answers” gave way to more questions: What can we feed Kaspar? What foods were on the panel that are okay (the doc had said cow’s milk and shellfish are fine, but what else)? His dairy formula had soy oil in it— was that a problem? Is Kaspar now more at risk for allergies to medications or vaccinations? How will we travel? I realized I’d inadvertently given him tastes of foods containing all of the above-listed offenders… he’d shown signs of allergic response, no doubt (we just didn’t recognize them), but never had trouble breathing. Does the fact that he didn’t go into anaphylaxis mean that he isn’t anaphylaxis-level allergic, or what?
I spent some time poking around online. I read an article by a mom whose son has multiple food allergies, and who’s learned to cook in a new way, who home-schools to ensure his safety, and sends him off to birthday parties with his own allergen-free slice of cake. I skimmed lists of household and food product ingredients that are derived from corn, egg and soy. My head spun; I don’t want to home-school Kaspar. I don’t want him to have to bring his own cake to birthday parties. I don’t want his body to freak out if he touches a peanut. I don’t want him to be in danger.
Aaron saw the mushroom cloud of doom and gloom conjecture forming in the air above my head; he urged me to close my laptop and go to bed.
We had a wonderful Christmas morning, unwrapping presents and playing with Kaspar’s new toys. Then my mother-in-law came into town and gave us some time off, so Aaron and I went to a movie. Still, I felt overwhelmed. As we bought our tickets, I thought “What if Kaspar can’t go to movies?” Everything looked different somehow. My chest felt tight. We saw True Grit, which was distracting—and good—but during a scene in which the protagonist cries out as her horse dies, I cried harder than she did… Yeah, I’m a softie, and an animal lover, but it wasn’t about that. Fear for one’s child is a very bad feeling.
I’ve done more research since that little low point, and gotten a more realistic handle on this situation (which is, as it turns out, far from the end of the world): I hit up my local mom listserv, and heard back from several parents whose kids have, in fact, outgrown most of their allergies. I heard from others who, armed with knowledge, new habits and experience, are dealing with existing allergies just fine. Aaron and I have compiled a list of twenty foods that we want to get Kaspar tested for as follow-up, and we’ve made an appointment with the allergist.
Kaspar’s happily chowing down on yogurt, pumpkin, rice, fruits and vegetables. I’m giving him whole cow’s milk and homemade rice milk formula (our pediatrician approved the recipe). Proximity to his allergens doesn’t appear to be a problem. His skin looks better already; he hasn't rubbed his face at all. And—fingers crossed—a friend of ours is probably going to take both of the cats. We’ll have visitation rights.
If there is one lesson that parenthood has taught me so far—and that this experience has driven home— it’s to stay present, take care of life right now, take it as it comes. Life right now isn’t more than we can handle. What’s overwhelming is something that isn’t real for us yet, and hopefully never will be— life-threatening allergies lurking around every turn. Sure, some people do have to bring their own cake to birthday parties. And if that’s Kaspar, I’ll learn to make a hell of a chickpea flour cake. But right now he eats pureed pumpkin. And now I know not to put lotion containing soy or egg products onto his skin (this stuff, however, works very well for us). This knowledge does make things easier.
Even if Kaspar never outgrows his allergies, I want him to live his life feeling confident and capable, knowing he can do anything (except, perhaps, eat peanuts). This is always my bottom line. I definitely don’t want him living in fear, or with a sense of limitation. Instead, I hope to instill a healthy respect for reality and an enduring flexibility that allows him to have his cake and eat it, too, whatever it’s made of. That attitude starts with me though, now, knowing we can handle this, and not freaking out.
So—deep breath-- we can handle this. So there.
Do, or did, your kids have food or environmental allergies? When did you find out? Have they outgrown their allergies? How has your family adapted to account for them? Are any of you dealing with really severe allergies? How do you make life ‘normal’ in spite of this? How about less severe allergies? This is all new territory for us, so I’m really looking forward to hearing about your experiences!