Trifecta!

Amazing news all around: Ari’s skin test results all improved, and Aviv went negative to a third nut! The skin reaction for Ari for his three nuts went down to 3mm each (from 4.5-6.5mm, respectively), and Aviv continued to show negative for walnut and hazelnut (as he did six weeks ago) and now pecan, too! I kept watching his arm during the test, incredulous at what I didn’t see. The fact that their DNA can change at all is hard to believe, and that it has now happened with 3 different nuts for Aviv in such a short time is truly miraculous. While the blood test results (to confirm) aren’t back yet, Dr. Nadeau assured us that negative skin test results are 99.9% predictive (positive skin tests less so), so we can feel free to celebrate. Aviv is THRILLED at the news and seems very proud of himself, and it again energizes all of us to keep moving forward with the daily doses.

Based on the mild skin test reaction to pistachio last time, we considered giving Aviv an oral challenge to pistachio. Pistachio is the nut that Aviv was allergic to, but couldn’t be included in the trial as it hadn’t been approved by the FDA. There was speculation/hope that a ‘bystander effect’ would occur, as pistachio’s genetic makeup is very similar to cashew (which he was desensitized to), and we wanted to validate that desensitization was occurring vicariously, as the previous skin test seemed to indicate.  As his skin test results to pistachio this time stayed flat (no decrease or increase from 6 weeks ago), we decided to hold off until the next appointment.

In addition to the great news of Ari’s tests trending in the right direction and Aviv showing another nut just who runs the show (a lesson he teaches us every single day), it was just such a smooth appointment. The boys were so easy going, showing what pros they are now, directing the location of the skin and blood tests, holding the tubes, and seemingly (almost) enjoying their appointment time. Tina even commented that it didn’t feel like she was with the same scared, crying boys who were there 10 months earlier.

Meanwhile, at home, Chef Tom’s creations are continuing to be well received and eaten without argument, both as delivered and as modified by Orr. Aviv called me to share his exciting news that he liked the peanut pesto that Tom made (green food – that was a big stretch for Aviv), and Orr had to actually stop Aviv from eating too much of the cheese bread he made from cashew ricotta. We’ve learned that there are different varietals of certain nuts (such as hazelnuts) that are sweeter; that soaking nuts softens them to enable a creamier taste (but don’t soak so long that they ferment, altering their protein makeup); and that nut flours (available online from places like Byrd Mill and nuts.com) provide a much finer consistency for improved taste. Thanks to Tom’s perseverance (and almost daily discussions re portion size, food math, etc.), the boys have actually had a few days now where they were able to eat all or most of their dose without having to rely on nut brownies and cookies; they can eat (quasi) regular food instead. I feel like we’re moving toward normalcy (albeit a new normal, but as close as we’ve been in the past six months) where our kids can hopefully resume the healthy eating habits they once had.

Regardless of form, the daily dose has brought with it many unwanted side effects – altered eating habits, undesirable focus on food, high fiber/fat intake that replaces regular meals, emotional stress, decreased enjoyment of food – and a recent visit to their pediatrician noted a higher BMI for both kids. It’s not surprising, considering the amount of fat/calories they’re taking in via their daily dose, combined with the fact that they have less time for outdoor activities (as they’re trying to finish their dose after school). To add another layer of complication, Aviv’s environmental allergies flare up when on grass or around pollen, which is normally managed well through antihistamines, but at certain high-allergen times of year (like now), even 20mg of Zyrtec/day may not be enough to hold him together. We’re going to work on increasing their activity (apparently active play dates are more productive, from an exercise standpoint, then organized sports classes) to try to offset the increased caloric intake, while remaining diligent about monitoring Aviv’s risk factors and carrying his medications.

So whether we’re watching them eat peanut pesto or pecan waffles or cashew mac & cheese or hazelnut crackers or even regular food, all that keeps running through my mind is a desire to shout from the roof tops and dance with joy about the significant progress and amazing results A&A are seeing. Aviv will have his next six week appointment in November, and Ari won’t return for tests for three months. That should give me enough time to figure out the word that describes a run of four wins, as I’m hopeful that "trifecta" won’t be enough then.