It’s amazing how much we learn each day during this trial.
Every time I sit to write my next blog post, I look back at the previous one
and feel there’s so much to share, even though usually less than a week has
passed.
We learned more about the protocol and next steps this week.
While I was disappointed last Tuesday that Aviv wasn’t able to updose and move
on to his ‘Week 24’ appointment next week due to his upset tummy, it turns out
that he wouldn’t have been able to move to Week 24 even if all was well with
him. The original protocol for this trial was for treatment of 3 allergens, and
the updosing schedule was written for that. When we first began, we were told
that the boys could only be treated for 3 allergens each, and we weren’t sure
how we would prioritize Aviv’s allergies and what it would mean to treat 3 nuts
but not the remaining 3, when the risk of cross-contamination would remain. At
some point in the first month or so of the Xolair shots, the decision was made
to allow Aviv to include all 5 nuts that could be treated. (There is one more –
pistachio – that he’s allergic to, but the treatment of that one hasn’t been
cleared yet by the FDA due to lack of a clean source of pistachio protein.
Pistachio is apparently the close protein cousin of the cashew, and they’re
hoping that treating cashew will result in a virtual treatment of pistachio
through a buddy effect.) Anyway, while the decision was made to allow the
inclusion of all 5 nuts, the protocol was only written for 3, so none of the
schedules or processes account for 5. Since Aviv is the first to reach this milestone
for 5, the team needs to now amend the protocol and figure out the rest of the
details (updose schedule, Week 24 process, etc.). Hopefully, they’ll get those
details worked out by next week, and Aviv will continue his updosing. We are
guestimating (based on previous updose
percentages) that it will take another 3ish updose appointments for him to get
to 4000mg/nut, which means that – if there are no delays – he could get to his
Week 24 by the end of summer. Fingers crossed.
Speaking of the kids, they’re doing well. We seem to have
gotten into a better groove on doses, honing the right balance of dose cookie
or banana bread, plus hazelnut milk, plus one nut that is being given
separately for various reasons. As the boys discussed which dose vehicle they
each prefer the other morning, I heard them talking… “I like the banana bread
best,” said Aviv. “I don’t,” said Ari, “it makes me feel like I’m going to
throw up.” Aviv, with a calm maturity about him that I hadn’t been sure was
there, turned to him and said, “Yes, it makes me feel like I’m going to throw
up, too, but I know it’s helping me to not be allergic to nuts anymore, so I just
eat it.”
After a week of toast, apple sauce and probiotics, Aviv’s
tummy seems to have calmed down and he’s tolerating his doses well. To keep
things from getting too boring, Orr shakes things up every four days, so today Aviv
moved from banana bread to cookies with Reece’s Pieces on top, while Ari stuck
with French macaroons. Mind you, none of these items have any real flour in
them; all (or 95%) of the regular flour has been replaced with nut flour
(ground up nuts). If anyone is looking for a high protein, nutty treat, we’re
happy to share the recipes! : )
As for Ari, he’s sailing along at his max dose of
4000mg/nut. I had to take a picture of the bowl of nuts that Orr was putting
into Ari’s cookie batch; it was just so crazy looking. This bowl (along with 20
additional chocolate covered hazelnuts, that Ari wanted to eat separately) makes up Ari’s dose for the next 4 days. It weighed in at 13oz (without the 20
additional)! There was a sweet moment where we showed Ari the bowl and pointed
out that he used to not be able to stand next to nuts, and now he was able to
eat this whole bowl. He just looked down at it for a bit, then looked up with a
twinkle in his eye, clearly aware of the magnitude of the moment.
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People get excited about weekends for different reasons…
sleeping in later (not if you have kids!), time together as a family, lazy days…
our kids get excited about weekends now because it means they get to have a
regular breakfast. Instead of our usual schedule of pushing dose in them in the
morning before camp – without any other breakfast food, so as not to make them
too full for their dose - we have more time together, so they can leisurely
enjoy real breakfast food. Aviv (who has always been a fan of a huge breakfast)
reveled in cereal, yogurt, crumpets and waffles this weekend, happy to be back
to his old friend, carb-a-palooza. Such a small thing like having a meal that
didn’t start with (or be replaced by) his dose made him SO happy; I couldn’t
say no as he asked for course after course, knowing we’d have plenty of time
later in the day to give it to him. It’s
the little pleasures, and for a kid who used to put down half a box of waffles in
one sitting, he had sure missed this one.
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