Food Allergies, Part Two: Happy Ending Edition! (Prepare to be Amazed)
January 23, 2011
I wrote a couple of weeks ago about our pediatrician’s suggestion that we do some allergy testing for Kaspar, who’s been itching due to eczema basically since birth, and the shock and panic I felt upon hearing the results: that he’s highly allergic to wheat, soy, corn, walnuts, peanuts, egg whites and cat dander. I was afraid, with that list in hand, that Kaspar’s daily life would be drastically limited by life-threatening allergies, but your comments—and my subsequent research (the learning curve on this stuff is sharp, huh?)—helped me land in a solid, “We can do this” groove. I figured I’d just feed Kaspar whatever he can eat—no big deal—and I requested some further testing so that we could identify which foods would be safe. That’s when things started getting weird. And worse. Way, way worse.
That second test included twenty common foods, and Kaspar blew through the very high allergic marker on all of them, too. Almond, avocado, barley, cashew, chicken, coconut, gluten, lemon, lentils, mango, oats, oranges, peaches, rye, sesame, strawberries… You get the idea. Our doctor said she’d never seen a kid with so many allergies, and that she was unsure what we were going to feed him—honest, but not exactly reassuring for a mama to hear. She ordered a third round of testing (we’re talking baby blood-draws here… fine the first time, but by round three the little man was on to us, and not at all happy), to—again—try and find some green-light foods. “We’ll get this figured out by his birthday,” she said. “We’ll get him better by then.” I hoped so, but it seemed unlikely. We’d somehow, unwittingly, stepped on to a scary and slippery slope.
Meanwhile, we’d made an appointment with the allergist she’d referred us to, but it was over a week off, and Kaspar’s eczema and itching-- which had been worsening for over a month—were inexplicably out of control. We were living, working and parenting on two hours of sleep a night, max. The little guy was miserable. We all were. I was exhausted, and worried. What had happened to our healthy, happy kid? My jaw hurt from constant clenching. I felt like we’d descended into some kind of nightmarish hell-hole, without a rope in sight. I wondered how Kaspar would survive on pork and milk (the two foods he’d tested fine for) alone. One night, as he cried and I did too, I asked Aaron “Is he going to die?” It just felt so overwhelming. Our problem was growing bigger by the day, and even our doctor didn’t know how to stop it. I wanted more than anything for Kaspar to get some relief. I placed prayer requests with friends who talk to God, Shiva, the Universe—whoever. This was big stuff and I was more than open to a little help from the powers-that-be. It had to turn around. That’s all that mattered.
We were expecting the third round of allergy test results back the morning of our appointment with our allergist. As soon as nine a.m. finally rolled around (we’d been up all night), I got right on the phone trying to track them down. I was told the results actually weren’t expected in from the lab for another couple of days. “What?!” I said to the nurse on the phone. “We’re going to the allergist this morning. My kid is allergic to everything we’ve tested for so far. Without these results, we won’t actually know what we’re talking about with this guy. I was told they’d be in today!” No luck. I wasn’t any more pleasant to the allergist, either. He entered the room, for our appointment, talking while looking at his clipboard, instead of making eye contact with us, or acknowledging our child (his patient). I pulled out my list of questions (would a coconut-based laundry detergent be a problem? Could he recommend a moisturizer? Why had Kaspar’s itching gotten so much worse when I was only feeding him pork and milk? Should we be concerned about allergic reactions to immunizations? Etc.), and tried to get a word in as he explained that eczema is treatable but incurable, that it usually improves dramatically by age three or four, that Kaspar’s body isn’t making some protein it’s supposed to, and so on.
“Right, we know he has eczema,” I said. “But it’s because of all of these food allergies. Have you seen his numbers? He’s allergic to wheat, soy, corn…”
“I would take those tests with a grain of salt. I want to do some different testing to confirm what I think is going on here, but—“
“Are you serious? We’ve drawn blood three times. These are allergy tests.”
“I’ve seen the results, and I think this has been gone about all wrong. They’re testing for antibody levels to the proteins in these foods. Most people’s levels are at a twenty or so, but people with eczema tend to have levels around a ten or fifteen thousand, as a healthy baseline. So, yes, those people would test positive for all of those allergies. I doubt your son is allergic to those foods.”
“Kaspar’s skin is a mess, and he’s had allergic reactions to foods.”
“Like with egg white. He got all agitated and then broke out in red bumps and threw up.”
“Did his face swell up, or did he have trouble breathing?”
“You should avoid eggs. I’d also avoid wheat, soy, nuts, fish. We’ll test for a few dairy proteins. These foods account for over ninety percent of food reactions in young children. The rest are fine. Chicken is a great protein source for him, for example.”
I was feeling burnt out on Western medicine, its practitioners and their conflicting diagnoses. I didn’t like this man (and he surely didn’t like me); I felt like he was blowing off my questions, like he was giving us some stock song-and-dance around eczema when we’d been through the ringer with it, tried everything already. We’d been told our problem was allergies. He was an allergist. What the hell?
“You haven’t ever been given an adequate treatment plan for the eczema,” he continued, looking at his clipboard. “It’s a condition that has to be treated aggressively and cleared up before it can be maintained, and then treated again during flare-ups. Your son’s been in a constant state of flare up. Your pediatrician has given you some bad advice around this, but you’ve been sent to me—and this information I’m giving you will help you.”
Aaron nodded as the doctor laid out a treatment plan—a several-weeks long daily dosing of creams, antihistamines and moisturization, with a calculated tapering off of the hard stuff (higher-concentration hydrocortizones) as things cleared up. I drilled the guy about the safety of hydrocortisone creams, and told him all of the moisturizers we’d tried and how they’d further aggravated Kaspar’s skin. He recommended something called Vanicream, and seemed generally unimpressed with my laundry list. I was infuriated by the way he examined Kaspar—he hardly acknowledged my baby as a human being, and just took his shirt and shorts off and turned him over this way and that, touching his skin and looking in his ears (I discovered later, looking at his credentials online, that he has a degree in Zoology, which might account for some of his weak points in patient interaction). Kaspar screamed, and I scooped him up. When the doctor said it would really be easier if Kaspar were on the table, I glared at him and said “I’m going to hold him for a moment and let him relax,” and then whispered in Kaspar’s ear (now this was immature, but I swear the doctor didn’t hear me) “I know, I don’t like him either.”
When he left the room, saying his nurse would be back with our prescriptions and to explain what we were to do with them, I said to Aaron, “He was awful!”
Aaron said, “Taylor, are you kidding? That guy just gave us the best information and advice we’ve ever gotten around this stuff. We actually have a game plan here.”
“He had a terrible bedside manner! He kept interrupting! He was so cavalier about the allergy stuff!”
“Yeah, well. I think he knew what he was talking about. I care less about bedside manner than about his expertise. And, babe, you were the one who was interrupting.”
Two days into the treatment plan, Kaspar was happily (an understatement) eating chicken, lentils, avocado and oats, and his skin looked amazing. He was—and still is, now a week in—also sleeping ALL night. Like a normal human being. Peaceful. Asleep. And by day, he’s even more animated, active and joyful than he was (amazingly… kids are so resilient, aren’t they?) through the constant itching. He is so, so much more comfortable. Our world has changed completely, for the better, in the blink of an eye. All of that misery seems like a blurry, distant dream.
And me? I stand corrected about ol’ Dr. Allergist man. His people skills may leave something to be desired, but I wasn’t exactly making use of my own (hey, sleep deprivation and an unhappy baby will wreak their havoc, as we all know), and this man has helped us out of our hole. He may have scared Kaspar, sticking things in his ears, but he has given Kaspar the gift of physical comfort, of sleep, and of food.
Funny how our perspective can change, isn’t it? That initial short list of allergens, which we’re still avoiding out of caution, now seems like NO problem. Piece of cake.
Mamas, thank you for sharing your food allergy survival experiences. I feel deep empathy for those of you who have landed in the hospital with anaphylactic kiddos, and great admiration for all of your creative, positive flexibility in the name of making your kids’ lives as easy and unhindered as possible in the midst of food restrictions. For those of you who are still figuring some of this stuff out—Funky Mama Bird, I think you guys are in this place?—I encourage you to see an allergist, proper. Our pediatricians have not been able to help us get the eczema in check, and have— of course with the best of intentions-- taken us in the wrong direction in terms of treatment (oral steroids? No…). Without those wrong turns, however, we’d never have ended up in the allergist’s office, getting solid help and solutions. Ultimately it was all for the best. And you know what? Kaspar’s birthday is less than a month away. And he’s better. We’ve got it figured out. Turns out our pediatrician was right about that.
Have any of you had a similar experience? How about those of you who're avoiding a bunch of allergens right now-- do you think they're really all a problem (granted, some people really are allergic to twenty-something foods)? Has it ever taken several different doctors and diagnoses to get to the bottom of a problem your kids are having? Looking forward to hearing what you think of this crazy saga and its ending.