The most important thing that I want to say about today is that it was a HUGE success. (There was a part at the end that wasn’t so fantastic, but let’s focus on the positive first…)
We walked in with relatively low expectations for the day, and were amazed to watch both boys calmly proceed through dose after dose to finally reach the maximum, which means that each kid will start their nightly treatments at 1250mg of nuts. 1250!! It’s a long way, baby, from Aviv’s significant reactions at 1.6mg and 25mg in the double blind challenges, and that is all due to the Xolair. Were we in a standard protocol study (without Xolair), getting to 1250mg would have taken us 29 weeks of nightly dosing. This significantly shortens their overall dosing period, and starts them out in a good place for graduating in mid-July. Woohoo!
After groggily leaving the house in the darkness (thanks to both an 8:30am appointment and daylight savings time), we kicked the day off bright and early with a vitals check and then the 3rd relatively painful Xolair shot, after which Aviv announced loudly, “I need a drink!” As all medical staff eyes turned to Orr and I (with the thought, I am sure, that we must be lushes at home!), Aviv reached for his water bottle. Sigh… Another ding to the old reputation. : )
They then received hourly doses of their nuts (3 nuts for Ari, 5 nuts for Aviv) in increasing amounts, to see where to set the baseline. Each of their nut amounts was mixed (powder form) with something yummy to eat – chocolate pudding for Ari, and apple sauce for Aviv – and then the little cups were administered hourly. Forget the nuts for a moment; the sheer amount of chocolate pudding and apple sauce that was eaten today was a little disturbing. In order to effectively serve as vehicle and mask for the nut powder, Aviv had the equivalent of 7 or 8 cups of apple sauce today. By the last dose, I was pretty certain he was about to vomit, and not from the nuts; there’s just a limit to how much apple sauce anyone can eat in a 6 hour period, and he had reached it. Thankfully, with each round of little dose cups, Ari announced cheerfully, “I love doses!”, as he was thrilled to be able to get his hands on so much chocolate pudding. Aviv did not join in on the cheering, but wasn’t about to appear wimpy next to Ari, so he trudged forward.
At 2:30pm, after watching numerous movies (my kids think I’m VERY cool because I know the names of the characters in the Star Wars movies they’re watching) and fighting a bit (to be expected when you’re sharing a twin size hospital bed all day), they received their last dose of the day (1250mg total of their respective nuts) without any fanfare, so we waited the requisite two hours of monitoring that follows the last dose of the day, to make sure that no reaction is lurking. Mind you, the cumulative amount of nuts each kid had today (due to the multiple updosing) was 2380mg, so their bodies were filled to the brim. We waited the two hours, congratulated ourselves for reaching the maximum so smoothly, received our bags of carefully measured doses to give at home each night for the next two weeks until we return for the next updose appointment, and then left. We were so excited, and so amazed that it had gone so smoothly, that I tempted fate by sending out an email entitled “Success!” to a few people who I knew were waiting for an update. We then walked toward our car, through the beautiful blooming Stanford gardens. That’s when things took a turn…By the time we reached the car, Aviv sounded congested and seemed a bit red. I gave him some Zyrtec and we drove off. Within 10 minutes, he face had started to puff up, he skin was starting to get splotchy and he began wheezing. I gave him another Zyrtec, called the physician’s assistant who we had just left 20 minutes earlier (who told us to come back), and we turned the car around. By the time we got back to Stanford, Aviv’s face had swelled, his skin was moving from splotchy to hives, and he was wheezing so loud that I was truly scared. I ran with him in my arms back to the SAFAR area, where I was met by the most amazing medical team a mom could hope for, equipped with oxygen and a whole host of medications. We spent the next two hours there (with a team who stayed late with us to make sure everything was ok) medicating and monitoring Aviv, as he regained his ‘Aviv-ness’, that is, as he went from limp and quiet to taking apart medical equipment, negotiating how long he needs to keep the oxygen mask going, and asking for food. Ironically, none of us believe that it was the nuts that set him off. We believe that his body was so saturated with allergens, that when he was exposed to the wave of pollens outside (which he is also allergic to), it just pushed his body over the limit. His cup was full, so to speak, and that small thing caused it to spill over. It was scary, but a great reminder of a few things.
First, we are so lucky to have such and amazing, caring medical team; second, that this is an art not a science, and we need to remember to think about their bodies holistically; and third, that we faced a significant reaction and handled it well, which means the fear of ‘what if?’ has dissipated. Giving Aviv the Zyrtec immediately helped slow the reaction, and knowing when to call for professional medical help should not be underestimated.
Everything is fine now. The boys are sleeping peacefully. We have some revised guidance about how long to watch them after each nightly dose. (It was going to be 2 hours; in light of Aviv’s reaction tonight, we’ll now get home and dose them earlier to allow for longer observation time, at least for the first week.) And more importantly, we have taken a HUGE step forward in this journey, and are that much closer to a different life.
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