May the force be with you

I am not a fan of the rain, and being out in it is something I actively avoid. Tonight, however, I gladly put on my Princess Leia costume (we do family theme costumes each year), tightened up the belts and boots on my fellow Star Wars characters, and took the kids trick or treating, in the rain, so that they didn’t miss their first uninhibited Halloween. No more fears of touching or accidentally eating unsafe candy; the only fear tonight for us was stepping on Aviv’s long, soaking wet Darth Vader cape. The kids felt free to accept any candy they were given, and when we came home, they engaged – for the first time - in the age-old tradition of pouring out all of their candy on the counter and touching, sorting, tasting, discussing and reveling in the sheer, innocent, childhood-ness of it all together. Ignoring the sugary artificialness of it all, it was a beautiful sight to see, and I found myself stepping back, watching them, and smiling. Hard to believe that only one short year ago, Halloween was still – like birthday parties and unannounced treats at school – an anxiety inducing event. No more, young Jedi; no more.

Faux ricotta, ice cream toppings and antihistamine... oh my!

As another week winds down, leaving in its wake hours and hours of baking, some firsts, some fights over dose, hours spent on ‘lunch box math’, some new discoveries in this ever-expanding field of research, some new hurdles to overcome, some feelings of accomplishment and wonder, some tough moments, and the ever present exhaustion, I continue to be amazed at how densely packed each week is on this journey.

First, the firsts! We took the boys to Ghirardelli Square. Ghirardelli was a brand they recognized early in their lives as being unsafe for them (due to cross contamination risk), so it seemed especially satisfying to go into the Ghirardelli factory (where chocolate/nut-palooza is an understatement), order a huge sundae, and go to town on it. And it was. 

As if that wasn’t enough chocolate and frozen dessert for one month, they also went to a nearby frozen yogurt store that is known for its extensive pile-it-on-yourself topping bar.  And they did. It was all I could do to hold them back from having an entire cup of toppings.

The sweet moments: Hearing Aviv proudly tell a friend who he hasn’t seen in a while that he isn’t allergic to nuts anymore. I didn’t have the heart to correct him on the technicality. What would that even sound like? “Well, you’re not allergic to 3 of the nuts anymore, but the other two you’re technically still considered allergic to until the study is over, although you’ve been desensitized to them. Don’t even get me started about pistachio which isn’t covered by the study…” No. I was letting him have his moment of pride. That kid deserves it.  We also went to a few people’s homes for meals, and marveled at being able to break bread together over nut-filled appetizers and meals.

The tough moments: there are many. We’re still not without fights over dose; they're just smaller and less frequent. Ari has let us know that he feels he’s getting the short end of the stick now (as he hasn’t gone negative to any nuts yet). When Aviv finishes his dose for the day, he asks for, in his words: "food, you know, FOOD food. Real food." All the prettying up in the world still doesn't help them feel like they're eating normal food, but at least they're sticking to the daily dose. We’ve also been through several nannies in this process (just started another new one this week) for a variety of reasons, but the specificity and criticality of getting the dose in each day, and the boys’ accompanying moods, certainly factor in.

Baking, freezing and lunch box math: The kids are still working with Chef Tom’s creations, although they want more variety. He started making ricottas out of the nuts which Orr has been using to make additional creations… lasagna, calzone, cheese bread, etc. To counter the boredom that comes from lasagna, hazelnut milk and pecan waffles every day, Orr (in his few days home between business trips) has spent hours upon hours baking additional items so that we can mix and match. I, in turn, then spend yet more hours labeling and freezing so that we can pull out the different pieces periodically. 

The real pedal hits the metal when I stand in front of their lunch boxes each evening, cursing myself for thinking that by going to law school, I could avoid math problems. 2/3 pecan waffle, plus 3 small cheese breads, plus half of a hazelnut cookie, plus ¼ lasagna equals… you get the idea. (Pic of one day's dose for Ari - and the note to keep it straight! - is to the right.)

New discoveries/hurdles: There’s a possibility that there may be a linkage between those who are seeing success in the trials and those who regularly take antihistamines. Aviv – who has had amazing trial results to date (going negative to 3 nuts!) – is on a pretty high dose of antihistamine (20mg of cetirizine, the active ingredient in Zyrtec) per day to keep his environmental allergies in check. Connection? Who knows, but we’ve decided to give some to Ari daily to see if it helps him progress. The new hurdle du jour? The product that we give Aviv (CVS’ generic version of Children’s chewable Zyrtec) has apparently been discontinued. (Really?? I needed that right now??) Zyrtec stopped making their children’s products in 2010, but CVS has made a great generic since then that works really well for Aviv. (You may remember from a few weeks ago, the fiasco that occurred when we tried to switch Aviv to Claritin, which apparently doesn’t hold a candle in efficacy for his particular body.) 

For some reason, CVS has stopped production on their children’s chewable tablets, and no one else makes an equivalent chewable. (There are children’s liquids, and adult tablets, but neither have been great fits for us.) We have several boxes of the pills, but we go through 25mg/day here (we just tallied it up – it’s almost $1000/year on antihistamine alone!), so our stock will be depleted quickly. Upon cleaning out the entire existing stock at a few CVS’s in Marin, San Francisco and Boston (Orr went from one CVS to the next on his recent business trip there), and coming up empty handed at many more, I sent an SOS email to friends in other locations who are – as I type – hitting up all the CVS’s in their areas to find and buy the last remaining stock. As back up, I’ve already planted the seed with A&A that they’re ready to start taking pills the grown up way (no chewing; just down the hatch with water). If they can handle that, we’ll just switch over to adult tablets and call it a day. Never a dull moment.

Finally, to end on a high note: We have another first coming up! We realized that this Halloween will be the kids’ first real trick or treating, and our first without gut wrenching anxiety. In the past, we’ve alternated between trick or treating inside a friends’ home (each door had a different adult with safe candy behind it; that worked when they were very young but quickly was outgrown), to going to parties with safe/pre-approved candy, to finally having to give in to trick or treating in public with agreed upon rules: no touching/opening any candy, no hands in your mouth, frequent hand wiping, and then a complete trade-in at home where we exchanged their loot for safe candy. The anxiety was palpable for us from the last week of October through the first couple of weeks in November, when mini-Snickers, M&M’s and Reece’s Cups seemed to pop up everywhere. This will be the first year where our concerns can be limited to the standard garden variety of sources. I’ll raise a pumpkin to that!

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.