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!
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