Saturday, March 15, 2014

Our food-allergy journey, part 1

Today for breakfast, Abbott had blackberries and a toaster waffle with almond butter and powdered sugar on top. It was a meal three years in the making.
I'll start at the beginning.

<insert gauzy b/w flashback sequence, with obligatory bangs to make me look younger>

When he was four months old, Abbott got a little pink rash on his cheek. I can pinpoint the month because Jeffrey's parents were visiting, and I immediately blamed them, with their commercial cleansers and scents (we'd been using soap nuts and no fabric softeners for years). But they cleaned up, and it still got steadily worse until it spread to his chin and his skin basically started to disintegrate. It wasn't every day, but it was a lot of them.

February, 2011. The skin seemed to bother us more than it bothered him. Buddy.

Our pediatrician was hesitant to put him on topical steroids, so we switched to another one in the practice who had no such hesitation.
As we were trying to get the skin condition under control, we noticed that he was also having gastrointestinal problems and getting skinnier and skinnier. I cut dairy and soy out of my diet, and tried cutting other things out, too, but it was like fixing an old pipe -- tighten one connection and another one would spring a leak. It took weeks for everything I tried eliminating to clear from my system, and I was impatient. That was a bad combination for sussing out the problems.

So at about 8 months, our pediatrician referred us to a pediatric allergist. He tested positive for milk and tree nut allergies, both of which I suspected. So began our journey of extreme care and heightened anxiety. I read and asked questions voraciously, and cried just as much, wondering if I should quit my job to stay home with him. It wasn't realistic, but I tortured myself with the guilt of it anyway, wondering if he would die at day care because he and another kid mouthed the same toy. For the first year, we were able to keep him home with a nanny, but then we put him in a center. We packed all his food every night, and he was eating an extremely limited diet. Looking back, I can see that it wasn't the best, but it was the only thing we felt comfortable with. 

That place worked out well until I came to pick him up one day after about five months to find the left side of his face red and puffy -- and no one noticed until I got there. I dosed him with Benadryl and yanked him from the center. We looked and looked for a place that understood his allergies (no one seems to know what tree nuts are) and finally found a place we loved. The director's daughter has peanut allergies, and when he mentioned "tree nuts vs. ground nuts" on my walkthrough, I was sold.

That year at his allergy appointment, he tested negative for tree nuts but positive for milk and additionally positive for eggs (I thought he might). Since he had already tested positive for tree nuts, we stayed away from them. One night the next year I made some shrimp, which he loved and enthusiastically and happily downed. About 20 minutes later he had huge welts and was vomiting, so we stayed away from that, too. To this day I can't eat shrimp; just thinking about it reminds me of how heartbreaking it was for him to enjoy it so much and then have a terrible reaction.  

We settled into a routine that was never quite comfortable: Check every label, curse the companies (it seemed like all of them) that combine production lines with allergens; make the vast majority of your food yourself; bring food everywhere you go; keep treats at school so he doesn't get crackers when other kids get cake; inform people when you can; be grateful as heck for vegans, without whom we wouldn't have so many great dairy- and egg-free options; read up and worry, worry, worry. Road trips -- hell, any trips out of the house -- were a challenge, because we didn't know what we'd be able to eat, where. So they involved weeks of research and plotting. Thank goodness for Chipotle.
Then last May, at 2 1/2, we had a breakthrough. We did a baked milk food challenge (baked egg we'd discovered was OK before he tested positive for it) -- a square of regular cornbread at the allergist's office. Jeffrey and I were both nervous as hell to knowingly give him something that we had gone to great lengths to keep him away from, but we had to be calm in front of Abbott. He needed to eat the cornbread so that we could see the results, and he wasn't going to if he sniffed any nerves from us. So he ate, and we and the medical staff watched him carefully for hours. 

He passed. A couple weeks later he ate a hot dog, complete with bun, at a festival. If he saw me crying that day, he didn't let on. And damn if I don't get a little teary every time he's able to eat something out -- just like a normal kid would. 

For a year we've been eating baked milk and egg -- Goldfish and Goldfish knockoffs, homemade Cheddar Bay Biscuits, cookies, muffins, cakes. I still introduce each new thing very carefully, with at least 4 hours of time afterward to watch him for reactions. We still bring our own cupcakes to parties, since many frostings have unbaked milk in them, and we still order dairy-free pizza since that's not quite baked enough (but again, thank goodness for the vegans!). We've home-tested the toaster waffles and pancakes they serve at school, which he now asks for all the time. 

It's revolutionized our lives and eased a lot of fears, but the spectre of his tree nut allergies has always hung over us. Those are the severe anaphylactic reactions we read about -- the tragically young deaths. Even though he hadn't tested positive for that allergy since that very first time, we religiously stayed away, at our allergist's urging. I'd asked her about  studies about desensitizing allergies -- whatever was getting press that month. She looked me in the eyes and said, "that has resulted in dead babies. Dead. Babies." That was the end of that. 

We also knew the numbers, that a majority of children outgrow dairy and egg allergies, while a majority of people never outgrow tree nut and peanut allergies. We knew that we were in for a lifetime of worry.

But this week we went in for his third annual allergy exam. After consecutive negative tree nut tests, she tested for two specific ones -- almond and cashew. Both came up clean. I came prepared to ask for a clinical food challenge for tree nuts, but before I could, she told us to just give him tree nuts. At home. With our hands. He's not allergic to tree nuts, she said. Just like that. For a day, I walked around incredulous, untrusting. But this morning I casually pulled both of our downstairs EpiPen Jrs. out of their holders and served him the waffle with almond butter. I watched him eat, then watched the clock as 4 hours ticked by extremely slowly. Nothing.

I'm not quite ready to declare that I feel comfortable with him eating all tree nuts. I'm still blocking out 4-hour chunks in which I can try him on different nut products. I'm still waiting for a shoe to drop (whichever one, doesn't matter). But I never expected to serve him almond butter on purpose. It's huge. 
As I write this, I'm keenly aware of those who deal with far worse allergies, who have struggled more, who have lost loved ones. My heart goes out to them. Food allergies have always been part of my family, but I never understood them until they came into my home. It's made me ever more understanding. I am, and will always be, a strong ally.

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