The bigger they come…

… the harder they fall. As euphoric as I’ve been the past two weeks over our newfound freedom from things that are made in a facility with nuts, I hit a pretty hard wall today at the boys’ updose appointment. They’ve now moved to 5800mg of nut protein/day and are on track to get to the end goal of 4000mg of nut protein PER NUT they are allergic to, by the end of the study. For Ari, this means ingesting 12,000mg (12 grams) of nut protein, and for Aviv, this means 20,000mg (20 grams) of nut protein per day. An incredibly large number of nuts are needed to meet those numbers. I actually ran some quick math, and I believe we’re looking at – caveat: math is not my strong suit – around 55 nuts/day for Ari and 102 nuts/day for Aviv at the end of this study. That's not a typo. I am hoping that my math is as bad as I’ve always believed it to be, as I can’t fathom how we logistically make that happen. What caused me to hit a wall today was the realization that we need to get 5800mg of nut protein into them each night. More specifically, it was watching Aviv struggle with choking down his 7.5 dense pecan halves and 4 bitter walnut halves (on top of the 5 peanuts, 6 cashews and 6 hazelnuts that he likes more, but were still too much for him). He was angry and lashing out during the updose appointment, crying and yelling how much he hates the nuts and he’s not going to eat them, and that they taste terrible and that he’s too full to eat any more… it was pretty miserable for everyone on the ward that could hear him. I couldn’t blame him… In addition to the bitter taste, I don’t know that I could eat that many nuts in one sitting with my grown up-sized tummy; how could he do it with his little 5 year old tummy? To mask the taste of the nuts, some are dipped in chocolate, some are mixed into puddings… each of these techniques adds sheer bulk/volume, which just means more to cram into their tummies. Don’t even get me started about the amount of sugar they’re now ingesting daily (in the evening) as part of the chocolate enrobing, just to mask the nut taste.

So as I sat there fighting with Aviv, my heart sank and my head raced as I felt overwhelmed. Where did the euphoria go? Was it going to be this rough every day? How were we going to make the walnuts and pecans (in particular) more palatable without bulking up on unnecessary volume? How could they possibly eat dinner after this (and I certainly don’t want them eating dinner before, and filling up their tummies)? Was Aviv going to get so frustrated that he’d turn his determined (read: stubborn) energy into fighting this, and jeopardize the work that has been done to date? And while this volume is huge, it’s going to get bigger in 2 weeks, and bigger still in the weeks that follow… was treatment of this many allergens simultaneously even logistically doable for kids this age? I finished forcing the last of the dose into Aviv (Ari wasn’t thrilled either, but he’s a rule follower, so he finished his dose without a fight), put on a movie for them as a distraction while we watched them for reactions for the next hour or so, and went to talk with the SAFAR staff. Maybe this just seems harder than it is, I thought, and I just need to talk with another family that’s further along in treating walnuts and pecans to learn from them.  Well, it turns out that we’re charting more new territory than I thought… no one else is treating 5 nuts simultaneously (some are treating 5 allergens, but not all are nuts, and they have much less volume to ingest with dairy or egg, for example), and no one is ahead of us with pecans and walnuts. So when I ask the question of whether this is really doable, any response is necessarily based on assumption and speculation… no one has actually done this with this many nuts. It also turns out they’re seeing some ‘soft’ needs with the families in the Xolair trial (that they haven’t seen with families in the standard/non-Xolair trial) around nutritionist/dietician support (to figure out how to get these amounts into our kids without jeopardizing their health in other ways) as well as therapy (to deal with the surreal changes that are occurring). It makes sense - our trial is moving and changing people's lives so fast that the emotional and operational parts of our brains are having trouble keeping up with the physical changes. One of the pieces of data that stuck with me from our months of interviewing doctors about oral immunotherapy/desensitization before joining the trial is that the only reason that there isn’t 100% success with desensitization trials is that not everyone can handle it; the protocol works, but some drop out along the way because it can be very hard to stay with it. It may sound crazy to say that, after the 2 over-the-moon weeks we’ve had, I was doubting myself about whether we could really stick this out – not just for a few more months, but forever. The reward for continuing is so huge, but the amount of nuts we’re talking about is daunting, and the struggle that occurred with Aviv today can’t happen daily; it’s just not sustainable.

After a short cry there with the SAFAR staff (I was overdue for one, really) and my emotional tornado finished passing through, I took a deep breath and started brainstorming solutions for where we can get some solid nutritionist/dietician assistance. So many questions... does the nightly dose replace dinner, for example? Should other proteins be removed from their diet? What can mask the nut taste in as low volume a way as possible? Can we use the nuts in their dinner, like coating chicken with them, instead of drowning them in pudding? I started emailing specialists and resources in our community tonight, trying to line up help. Making lists and  executing on game plans is comforting for me, actually, and this was a time where I needed some comfort. I know that we’ll figure this out, even if it feels bigger than us right now. As I tried to calm Aviv down this afternoon, I reminded him of his own words from last month - “I’m brave, and I know that even if it’s scary, I can do it.” As is often the case, Aviv’s depth surpasses his age, and I’m taking his words to heart, as well.