4000mg for everyone!

Aviv’s final updose went very smoothly, as has the past week. His body is tolerating the full maintenance dose of 4000mg/nut (20g of nut protein total) without any problem – woohoo! I did the math this week, and it takes 173g of his combination of nuts (about 1.25 cups of nuts) to get to 20g of nut protein/day. I often write about his emotional struggle with his dose, but we shouldn’t lose sight of the biggest news, which is that his body isn’t rejecting it… he’s had virtually no reactions in months, despite eating over 100 nuts/day now. Ari, too, is sailing along smoothly with his maintenance dose with no reactions and no issues. These are mindblowing facts and a testament to modern medicine and research.

We had some great moments again this week, such as going out for spontaneous dinner and ice cream (with cone and toppings!) after they finished their dose on Sunday. My previous parenting approach of no/minimal sweets has gone completely out the window as I want to incent them to eat their dose early in the day to avoid the end of day fights. Instead, I’ve adopted the ‘you get to eat [almost] whatever you want if you finish your dose early without arguments’ approach, and have found it to be very helpful in bringing some serenity back to our lives. We were never parents who fought over eating or bribed with food, but tough times call for tough measures, and maintaining the daily dose definitely qualifies as tough times.  (His meltdown on Saturday, tears streaming down his face, shouting, “I don’t want to be in the study anymore! I hate my dose!” solidified that.)  My favorite moment of the week, though, is when Aviv and I were walking past his Kindergarten classroom that still had the sign up on the door from last year that read “This is a nut-free classroom”. We stopped and talked about how his class won’t need to be nut-free next year because of all of his hard work in taking his dose. He enjoyed wagging his “oh no you don’t!” finger at the sign, and felt good about letting it know who the boss is now.

I had a bittersweet ‘aha’ moment this week. In laying out for Aviv the ‘pros’ of staying on track and eating his dose, I mentioned a number of activities that he could now do… go on play dates and sleep overs, eat whatever birthday treat is served at school, etc. He wasn’t impressed, telling me that those were all things he was already able to do. I realized that he believed that to be true because we had always worked hard to make sure he and Ari didn’t feel bad about their allergies, or that their allergies prevented them from living their lives. Most play dates occurred at our house or at a park (a limited number of families felt comfortable having the boys over), and their preschool didn’t allow families to bring in birthday treats from home. We brought great looking /great tasting cake to parties and avoided places where the majority of things were off limits, so as to shelter them from disappointment. Apparently we did a good job of sheltering (which I’m glad about), as Aviv didn’t feel there were substantive limitations in his life that warranted the daily dose ingestion. Had they felt the disappointment more all along, the daily dose ingestion might feel worth it to him. Ahh, the irony never stops around here!

Aviv continues to try new combinations to break the dose monotony. Pita-chips-on-dose seems to have bypassed chicken-strip-on-dose as the favorite concoction of the week; I don’t care if he piles dirt on top if it helps him eat it. He is on track toward his ‘week 24’, which will be different than Ari’s. The SAFAR team had to adapt the week 24 protocol (which was to test all the treated allergens by doubling the dose on one day) for the participants who are treating more allergens. As hard as it is that Aviv has to eat 20g of nut protein/day, it would truly be impossible for him to eat 40g in one day. Instead, his week 24 testing will be split into 2 days (a week apart, to give his body time to recover from the first day), wherein they’ll test 3 nuts at 6g/nut on one day, and the other 2 nuts at 6g/nut on the second day. He’ll also need to have his maintenance dose of the non-tested nuts for each of those days, which will amount to 26g of total nut protein on one day, and 24g on the other, plus blood and skin tests. Also, for 24 hours prior to any testing or updosing, kids need to be off of antihistamines (so we can see the body’s true, unsuppressed reaction). Aviv takes a fair amount of meds to manage his environmental allergies that need to be stopped prior to these week 24 days, the stopping of which makes him uncomfortable (itchy and congested) and cranky. No, I’m not expecting either of those days to be fun for anyone. August 21^st and 31^st are the upcoming party days; think good thoughts for us!