Study #2: the adventure continues

I can’t believe three months have passed since I last posted.  Ari & Aviv had their final appointment in the Xolair/multi-allergen oral immunotherapy study in August, where they did final skin and blood tests. All was good: the skin test showed tiny dots of redness for Aviv on cashew, peanut, walnut and pecan; hazelnut didn’t show anything (amazing!) and pistachio had a small dot. Ari’s test had a tiny dot for hazelnut, and nothing at all for pecan and walnut. (Woohoo!) Since there’s no magic formula to look to yet (regarding exactly how much of each nut is needed in the maintenance doses), we talked it through with the staff and agreed upon a cocktail for each kid that may be altered in the future as we watch the skin/blood tests moving forward. For the past 3 months, Aviv has been having 4 grams of peanuts, 2 grams of cashew, 1200 milligrams of walnuts, 2400 milligrams of pecan, 300 milligrams of hazelnuts and 800 milligrams of pistachios in his daily dose since graduating, and Ari has had 4 grams of hazelnut, 1200 milligrams of walnuts and 2400 milligrams of pecan in his. While still a good sized amount, it’s so much smaller than what they used to have that it feels very doable for them. The boys don’t argue about dose anymore, other than to occasionally complain to Orr that they liked one batch of dose cookies better than another… Chutzpah! [I finally tried one recently – delicious! High protein, gluten free and filled with chocolate – YUM! I wish he’d make more so that I could eat them, too…] The funniest, most unexpected part of the daily dosing has been the reaction of their friends. Aviv’s class is very jealous of his dose (who wouldn’t want yummy cookies for lunch?), and I’ve heard from parents of classmates that their kids ask for dose in their lunch, too. Ah, the irony!

We had our second worry-free Halloween, and I watched the boys collect and sift through candy with awe and delight. They still aren’t familiar with a lot of the brands, and they asked a lot of questions as they explored this still-newish world. They ate 2 pieces each that night, and that was it. The next morning, Aviv reminded me that we needed to bring the candy to school to donate to the student-led candy drive for the troops, and there it went. No more Halloween candy in our house. I guess one of the silver linings of them growing up with food allergies is that they never learned the seemingly-ubiquitous ritual of gorging themselves on candy long after the costumes are packed away.

I don’t think Ari & Aviv think about their new reality much anymore – kids are resilient and these guys have just adapted to their new world – but I still do. I drove carpool on a field trip recently and quietly noted the circumstances in which Ari might have felt ‘different’ had he not been able to participate in the snack handout, food tastings, etc. They run freely at friends’ homes, make themselves plates at buffets, eat everything served at birthday parties, and enjoy new restaurants and adventures without fear. They occasionally ask us when they can stop having their dose, or why they still carry EPI-pens, and don’t seem impressed by our responses of, “we’re not sure; for now we need to…”, but that’s the best we have for them right now. As for us, we regularly talk to other families who reach out for advice on how to manage either dosing (if they’re in a trial) or the ongoing risk (if they’re not). We’re happy to do so, so please don’t hesitate to reach out if you think we might be able to help offer you some hope or practical tips.

We’re headed back this week for our first appointment under the new “Understanding Allergies” study that the boys were enrolled in (to allow the SAFAR team to keep monitoring and supporting them, and to provide some long term data), hoping that the maintenance dose that they’ve been eating was sufficient for their bodies, and that their tests will continue to show great results. There are no guarantees, of course, when you’re in a clinical trial… no years of data to point to to assure us that the boys will continue to be desensitized, no guarantee that if they stop eating their maintenance dose that their bodies will continue to remember all the hard work it’s done... The current belief is that the longer they take the maintenance dose, the higher the likelihood that the body will really remember, so until told otherwise, they’ll continue to have their daily dose. Viva la chocolate chip dose cookies!