I never had any idea what life with food allergies was like – until I did. We found out with a tiny bite of a walnut at our kitchen table when our second child was ~18 months old. His face turned bright red, his eyes swelled, within minutes his voice went hoarse, his chest was welting up. We had called the peds after hours number and a neighbor with a son allergic to antiobiotics. We gave Benadryl and it did nothing to help while we were on the phone. The moment his voice changed we raced out the door to the local ER / Urgent care. That was the longest mile drive of my life at the time. Then came the epi-pens, strict avoidance, endless label reading, endless fear every time the phone would ring when he was out of our care. I became the hovering mom, the endless re-checker, the list maker, the epi pens everywhere, can’t have a babysitter, terrorized, running out of meetings to take a local phone call, stressed out allergy parent. People didn’t get it. We limited where we ate out, reviewed restaurants on allergy eats, called ahead, often brought our own food, grilled the waitstaff, grilled our family and friends.
And then one day when he was two and a half, it wasn’t enough. Again. We were at a funeral reception and the waitstaff/caterers told us twice that there were no nuts in anything. And they were wrong. Tried to give my son benadryl, he spit it out, I had to drag my parents out of a funeral reception, sprint to the car (in high heels), and get the heck out of there. A relative (who was a nurse) attempted to epi him as she had experience with the epi-pen, and she had it upside down, and epi-ed herself in the thumb. We didn’t know better at the time and didn’t use the expired epi-pen we still had and raced to an urgent care. (We also had to remove the epi-pen as it got stuck in the bone in the thumb of the relative!) Urgent care told us we would need to wait 15 minutes, even when I told them he was breathing abnormally. They wouldn’t budge even when I said anaphylaxis! So we got back in the car and raced across a highway to a huge ER in Virginia. At this point he was wheezing and I’m grateful he was still breathing. Sprinted into the ER, ignored the sign in people who were telling me to fill out papers, while I was yelling “Help he’s in anaphylaxis!” A triage nurse grabbed us and yanked us into the back where we were swarmed with doctors and medications and nebulizers with steroids, and you name it. So we learned that our safe wasn’t safe at all. That our son had uncontrolled asthma and biphasic reactions. That strict avoidance and trusting other people nearly killed him. That I gave him (again), a food that nearly killed him. There is no coming back from that ledge for a while. That night destroyed my faith in the social food community, in the capability of the world to protect him or of us to keep him safe from the world. Well meaning people keep giving him things he shouldn’t have and getting lucky. And I knew that one day he wouldn’t be lucky.
We intensified our efforts, changed all the rules, ate nothing we weren’t absolutely sure of. We stifled the childhood of an extroverted amazing little kid. We had to. Someone was going to actually make him stop breathing by doing the unthinkable act of feeding him something with intended kindness. Every party was a nightmare of following him around every moment. Every dinner with family and friends was a huge stress instead of being fun. I was miserable. We were miserable. He was thankfully young enough to be mostly blissfully unaware of everything that was going on in the background to protect him. We… we will never forget the days we spent in hospitals watching him struggle to breathe. How we stayed out of the epic breakdowns I’m not sure. Well, I guess we had them, but they were in private or with very close friends.
Our allergist pretty much told us nothing but here’s an Epi-pen, don’t eat walnuts, pecans, or hazelnuts – and that’s all you got. We started finding online support groups like POKWFA (Parents of Kids with Food Allergies) and Triangle Mommies, but I felt SO alone. I started talking about it more at work, and met another parent seeing a different allergist in Raleigh, and she told me her daughter was doing this thing called OIT for peanuts and was seeing progress in desensitization. I was amazed, I’d never heard of this, had no idea it was even possible (this was 2013). We were struggling with asthma and not getting a lot of help with our allergist on that front either. We asked the friend to ask their allergist if walnut was a possibility and eventually got a resounding yes. I called our usual allergist to ask about this amazing option and they flat out refused to discuss it and treated me like we were crazy. By this point we had searched and read about Stanford’s trials, and we knew about the Duke/UNC Devil study, so we knew it was working for other kids, but seemed very taboo. So we got a copy of our records and went to see the new doctor – Scott Nash – in Raleigh, NC. And turns out that “new” doctor had worked at Duke/UNC on those studies, and was following the known working protocol. And he was willing to do walnut/pecan/hazelnut with us. We agreed to do one at a time, and were hoping that walnut would help with pecan. We got asthma under control with some new meds (he was the first doc to actually get the asthma under control). And then oh so slowly, we started OIT for walnut. We went through so much, we didn’t know who to talk to, didn’t have all the amazing support groups that we found eventually. We were scared. VERY scared. And 99% of the time it was supremely BORING. Blissfully boring. Terrifying. And boring. To help my sanity, I blogged at www.thentherewerethreenuts.blogspot.com for two years. I need to update it, but it’s hard to open these doors again.
Partway through our OIT journey we found Private Practice OIT, and OIT 101 on Facebook. We had finally found our tribe. I love Triangle Mommies, and POKWFA, but we were so rare in both of those communities that people couldn’t relate. My “special needs” kid was nothing like theirs. Our treatment options weren’t available to them or they thought we were crazy. The things that were said to us were pretty terrible at times. Family, friends, strangers in “support” groups. Finally a place where other people across the country were doing what we were doing. Then we found Raleigh OIT (now North Carolina OIT) – and we found other parents and kids at the same office doing OIT. My world opened up, we had been down this road, we knew these fears, we could offer hope, and glean hope. These are the groups that understood. These are the groups where someone is online at 3am when your kiddo is coughing and you’re scared. That that pimple is probably just a pimple and not a hive. That throat clearing might be a sign worthy of calling the doctor. That you should use that epi, expired or not! These moms and dads became my friends, my confidants, my safe place. And slowly, I got my own sanity back.
We did updoses for a year and then held at a “maintenance” dose for a year. Then in May 2015 after a food challenge, we passed walnut! The next day we did pecan, and passed! A week later we did hazelnut and passed! At the time we thought maybe he’d never been allergic to hazelnut after all, but many years of reading and talking to others in PPOIT and OIT 101, I think we were “covered” by walnut. There is some precedent but not anything we understood at that time. Now the things I see coming out of Arkansas Children’s Trials suggest that we are not alone in this, which is wonderful. It’s complicated, and seems not to apply to everyone, but there are groupings of nut allergies that seem to work this way for some people. And walnut OIT in some new trials seems to cover various other tree nuts (not just pecan which we were hoping for). So what I thought at the time was just luck, I think turns out to be that we chose to DO something. We worked hard to make OIT work. We scheduled our lives around updoses, our meetings around appointments, our sports around the times we could make work. We took it low and slow.
And now. Now we have freedom. It’s not 100% absolute ridiculous freedom, but it sure tastes good. It was worth it for us. It was worth it for him to have a more normal childhood. It was worth it for our sanity. It was worth it to protect him from strict avoidance which looks a lot like teachers, family, friends, and staff constantly bending the rules on food because they don’t understand. It’s a glorious new place where we keep finding new bakeries, new candies, new ice cream in public. A million firsts for our kiddo (who just turned 7 and ate at Ben and Jerry’s for the first time ever). We have a community online – we have friends who understand. We have fellow graduates to talk to about maintenance and research. We have new folks to encourage. We have kids reactions who’s parents need big hugs and encouragement. We have hope. And we can offer it to others. OIT is not for everyone, but it sure as heck was for us. When Dr. Scott Nash closed his office I cried. I know I wasn’t the only one. But there are new doctors, new choices, there are options. He will always be our “applesauce doctor”.
And for me? I can be me again. I am an allergy parent, but I am no longer JUST an allergy parent. We used to skydive. We love to take photos underwater and scuba dive. I like to mentor kids in STEM. My husband likes to code lego robots. I’ve joined Rotary, I’ve grown at work, at home, and as a human. The freedom has given me back my life and my sanity, and my chance to give back. I will stay in OIT 101, PPOIT, North Carolina OIT. I needed that community when it didn’t exist and when I didn’t know it existed. There is hope in those places. Come and join us!
