25 = freedom

What a difference a week makes. A week ago, Ari was unhappy and struggling to eat his daily dose and manage his bloated tummy. Today – after Ari went negative to two nuts last week, enabling us to drop his daily dose from 60 to 25 nuts – he’s happy, finishes his dose in one quick shot, and his tummy is returning to normal. On Wednesday night, at the end of his first day of his new/smaller dose, he hugged me and told me how happy he was to have a normal lunch that day. For the first time in as long as he could remember, he ate regular lunch food instead of dose. Such relief and excitement for him, in the form of a half bagel! Prior to Wednesday, in order to finish his 60 nuts a day, he ate dose for breakfast, mid-morning snack, lunch and afterschool snack. It was usually late afternoon or dinner time before he was able to eat anything ‘normal’ – not because it wasn’t safe, but because if he filled his stomach with anything additional, he wouldn’t have room for the dose. It’s a pretty small, 7 year old tummy, after all.

Now Ari & Aviv are able to finish their dose easily, usually by lunch time. Both boys’ dose now consists of their full, regular 4 gram nut protein dose of the one nut that they’re each still considered allergic to (fully desensitized to, but still showing up as a reaction during the scratch test), and then 2-5 nuts of each of the other nuts that they were previously allergic to, which amounts to approximately 25 nuts for each kid, per day. What a far, far cry from the 106 that Aviv used to eat, and the 60 that Ari used to have! It finally feels doable and sustainable. (It was technically doable for a while, but not sustainable.) Frankly, moving to 2-3 nuts of each of the nuts they’ve gone negative to is a bit of a leap of faith. Post-desensitization in the study, the job of the daily maintenance dose is to keep reminding the body of its desensitization so that it doesn’t forget. But what about when the chemical make-up of the body changes so fundamentally that no indication of the allergy remains? Does it still need to be reminded via a maintenance dose? There’s no instruction manual or data to consult regarding what happens next after a body is severally allergic, then desensitized, then goes negative… the best minds are on this cutting edge issue right now and believe that it reasonable to think that, because their bodies don’t reflect the allergy in their DNA anymore, they don’t need to eat the daily dose. We’re all a little wary of going cold turkey, however, as the stakes are so high, so we’re continuing to give each kid 2-3 nuts (depending on the nut protein composition) per day, per nut, just in case. It’s all relative… a year ago, ingesting 25 nuts would have been a very clear death sentence… now it feels like the miracle food that keeps them safe and gave them (and us) their lives back.

The boys were happy to help Orr make the lastest batch of dose tonight to reflect Ari’s new amounts. All of the careful measuring of nuts, multiplying times number of doses, adding chocolate and sugar to mask taste, then reweighing still occurs; this time, the final product is just so much less. His entire dose now fits into one cookie, and Aviv’s entire dose fits into one brownie. Unbelievable.

Speaking of unbelievable, we had the pleasure of arranging a speech by Dr. Nadeau in San Francisco last week to a packed room of allergy parents, kids and medical professionals. Orr was to introduce her and share our experience, and Ari decided he wanted to attend. (“Will she  talk about us?” Ari asked. Hearing that she would, he decided to forego a special movie night at home to come.) He met other kids his age who are in the same situation he was, and he told them that he’s not allergic anymore. While Aviv is still a bit young to appreciate the full magnitude of Dr. Nadeau’s research (and the huge impact on his life), it was beautiful to see Ari soaking it all in. He wanted to understand all of the details in her presentation and felt very proud afterwards that people congratulated him on going negative and getting to this point. To those who told us that it gave you hope to hear of SAFAR’s desensitization efforts and our success, we are so, so humbled and glad. I know how despondent one can feel, navigating life with severe food allergies, feeling like it’s only going to get worse… please know it doesn’t need to be that way forever. Dr. Nadeau and others continue to push the bounds of knowledge and research, and she is working with other facilities around the US to put forward a coordinated phase 2 of this multi-allergen trial. Other trials – including a peanut patch trial, twins research and sublingual trials – are progressing as well, helping to truly unlock this puzzle, and every data point and daily dose diary that we keep helps to bring this field closer to treatments and solutions. We are grateful that Ari and Aviv were able to be pioneers in this, and hope for more smiles, more trials and more amazing results for all.