Kaspar went into anaphylaxis last Sunday afternoon, a week ago. His lips swelled like balloons after eating some lentils and goat cheese, and I stabbed myself clear through the thumb (in the pad, out the nail) with the first Epi pen before getting it right with the second. Aaron called 9-1-1.
The ambulance arrived within minutes, and although Kaspar’s lips were still huge when it arrived, the EMTs taking his vitals-- while I held him, and told them what I just told you, trying to keep it together-- said his breathing and heart-rate were right where they should be; the Epi had worked, and we were headed to the hospital. Aaron followed in the car as Kaspar and I rode in the ambulance; he was strapped into his car seat on one side of the vehicle while I was belted in just across from him. I tried to reassure him, through my tears, and simultaneously tell the EMTs everything I knew about Kaspar’s allergy history, which is an incongruous mess of test results and conflicting opinions.
We’d indisputably done exactly the right thing after seeing Kaspar’s lips swell—shoot the Epi in his leg and call the ambulance—but were kept in the hospital under observation for six hours, regardless (anaphylaxis can rebound). Kaspar, for his part, made himself comfortable (as in, exuberant and active) as soon as we arrived there— he repeatedly pulled his monitors off, and flirted relentlessly with the nurses. We’d been taken to a children’s hospital, so were given toys for him to play with, though entertaining a one-year-old in what’s basically a human-sized fish-bowl for hours on end is definitely a challenge, with or without toys (we all gave up on the monitors after several hours). Aaron went home for a while to get some work done, and I stayed with Kaspar in our little room, got him to nap for some time, lay there next to him, wrapped around him, watching him breathe and trying to breathe, as well. Inhale. Exhale. He’s okay. He’s okay. It’s going to be okay.
He’d had an intense histamine reaction after eating some organic baby food containing peas and carrots just the day before, at the grocery store; we’d had to cut our trip short and book it to the nearest pharmacy for some Benadryl, which worked almost immediately. Since our appointment with an allergist, who’d focused on Kaspar’s eczema rather than allergy test results (but also run more tests of his own), we’d followed the doctor’s instructions and avoided the major common food allergens—wheat, soy, eggs, cow's milk, nuts, fish—and followed a tapered topical steroid treatment plan intended to beat the eczema properly into submission. As soon as we’d finished the steroids, however, the eczema returned, and Kaspar continued to vomit more frequently than a person probably should, and occasionally had histamine reactions along the lines of what I just described. We’d started keeping a food diary, which only reflected the daily roller-coaster of a guessing game we were living around all of this, but didn’t point to any obvious, consistent triggers, and just left us more mystified (and exhausted).
We’d gotten to a pretty calm place, however, with both the eczema and vomiting. Kaspar has been pretty much baby-business-as-usual (if rather itchy) throughout our saga; growing, laughing, developing, and being a happy, delightful little guy. Western medicine’s approach, for us, boiled down to a “good-luck-guessing”, and “hopefully-he’ll-outgrow-it” bottom line, with questionable doses of steroid and antihistamine medications sprinkled in. We weren’t about to give up on looking for solutions, but we weren’t going to make ourselves crazy, either, having come up against only walls in seeking them. We planned to continue living and enjoying our lives, as a family, while we continued to seek solid ground in this respect.
In fact, we’d taken Kaspar to a naturopath, someone a friend recommended, just before the grocery store trip last week. After spending two hours with us, she came up with a low-dose treatment that’d hopefully help Kaspar’s system—which is clearly maxed out on some level— start to pull itself back into balance. From the inside out. This sounded right to me, theoretically, and we were willing to give it a go. I was optimistic (I am chronically so); Kaspar was being totally normal, I was feeling normal, and there we were being normal and shopping for our groceries… and then we had to leave and get some Benadryl in to our kid, who’d broken out in hives after vomiting all over the cereal aisle. Oh, right. Things are not normal for us right now. (I don’t place undue value on normalcy with respect to, you know, other people… I mean normal here in terms of what feels natural and right in our respective lives.)
Anaphylaxis is a game-changer, though. As our ER doctor told us upon our discharge (and as this fascinating article in the New Yorker recently touched on), “We don’t know much about this stuff, but we do know that it’s very dangerous. Life or death.” Not exactly the comforting words of reassurance a terrified mom wants to hear after seeing her kid’s face start to swell and then jamming a needle into his leg before hopping a ride to the ER in an abulance. But, he was telling the truth. He also said that we should give our allergist another try, and that if we didn’t feel like a solid relationship was forming, we should find someone else.
We saw the allergist the next day, and he took us seriously this time around. He asked lots of questions, and answered ours. He suspected that the peas and the lentils both cross-reacted with Kaspar’s (very real, as his rounds of tests turned up) peanut allergy. The goat cheese, too, which was cheap stuff-- the cheap stuff in the states is made with rennet derived from some gross GMO/soy-related alchemy that Europe won’t even legalize-- could very well have been the culprit. In any case, he suggested that we scale Kaspar way back to only brown rice, pumpkin, sweet potato and hemp milk-- all foods Kaspar can definitely handle-- for a week, and then introduce one new food at a time… very… slowly… according to what his test results showed would likely be safe (like, chicken came in at a “1” on his tests, while peanuts were a “79”—chicken is therefore probably okay for Kaspar to eat). Pretty straight-forward food elimination. He had a ton of blood drawn, too, so we could test for more foods and then meet with him, and a nutritionist, again in several weeks to round out Kaspar’s diet, safely.
Now, this all felt like a pretty direct flashback to our pediatrician’s tests and objectives back when this all began, which I mentioned, but this allergist’s tests are somehow different, more specific… and so far, so good. Kaspar’s just finished his week of brown rice, pumpkin and sweet potato, and he hasn’t thrown up once. So, we gave him chicken tonight. I sat there with my heart in my throat, staring at him as he ate it (and he ate it with fervor, occasionally noticing my staring, and flashing me a goofy grin). No barfing, no swelling, no hives. Inhale, exhale.
His skin also looks really good, without any steroids. Maybe the eczema has been food-related all this time, after all.
I’m not going to get all excited, thinking our problem’s solved. It’s not. It’s just currently eliminated (we do, however, know for sure that it's a food allergy problem. That's progress). But the kid has to eat. He has to eat more than pumpkin, chicken and rice. And every time he eats anything new, I’m going to be staring at him, re-living that moment when his top lip looked like it had a marble right in the center of it, and then, within seconds, his whole mouth followed suit. I’ll be re-living that for a while. I feel reassured that Kaspar isn’t in daycare just yet, that we have full control over his diet, that we know how to use Epi pens (well, now we do, anyway), that life is still pretty simple. In a strange way, having this worst-case-scenario play itself out launched us from the guessing game into the big leagues of finding out some facts; the lab tests give no guarantees, but do point to likelihoods… and obviously we won’t be re-introducing peanuts or anything else that’s clearly problematic.
I know we have a long road ahead, but I also know that others have gone before us—some of you have gone before us—and that the numbers of food-allergic American kids are growing at scary rates. In fact, I met a mom in the room next to us in the hospital-- we escaped our fishbowl for little walks here and there-- who’s middle child has multiple food allergies (she was there because her youngest child had the flu). I feel like every other person I meet these days is that mom, or knows a mom like her. This mom seemed pretty calm about the whole thing, though, having found her kid’s “new normal”, as some of you dubbed it after my first deer-in-the-headlights post on this topic.
I’m scared by the rates at which food allergies are increasing in American kids. Luckily, there are more and more moms out there who are making some intelligent noise about this trend; while we were speeding from the grocery store to the pharmacy last Saturday, Robyn O’Brien was speaking at TEDxAustin about how the American food industry is making us (actually, our kids) really sick. She’s an unlikely, and eloquent, advocate for major change. I have heard from numerous people— many of them without kids, and personally unaffected by food allergies-- that her talk at the conference stood out as the most compelling by far.
As for us, we’ll be watching all of this closely, and finding our way to our normal. I’m determined for Kaspar never to go into anaphylaxis again, now that we’ve been there once. I spoke on the phone with the naturopath once the dust settled; we’re going to continue working together with our original goal in mind, as we also work closely with the allergist. Everyone’s proceeding with caution. As we should. This week’s been great (if a little gastronomically dull) for Kaspar, though; you’d never know he’d landed in the ER. I’d have forgotten it myself, what with him playing and smiling and taking his first steps (!!!), except that we feed him several times a day, and then I remember.
Have you ever experienced a major emergency involving your kids? Are you on the allergy roller-coaster, like we are? Do you know anything about homeopathy (new territory for us)? Have you ever called 911? I’m looking forward to your thoughts and responses.