Tuesday’s updose went very smoothly, in large part due to
Orr’s brilliant idea to split up the dosing, that is, to give the boys their
usual (past two weeks) dose prior to getting to Stanford, and then just give
them the additional (updose) portion there. I’m not sure that it’s standard
protocol to do that, but we’ve had such a struggle with getting the whole dose
into the boys in one sitting, that the SAFAR team gave us approval. That made a
huge difference in the time and ease of our appointment. The boys are up
to 11,200mg now each day of nuts (with no reactions!), and – if you can believe
it – they only have one more updose appointment left! While there have been
days (really, meals) that felt as if they dragged on forever, the truth is that
this has gone incredibly fast. The plan is that they will have their final
updose appointment on June 19th, and then their big test day (“Week
24” – the final week, as it’s known in the protocol) will be all day on July 2nd.
I spent some time with the SAFAR nutritionist exchanging
tips on how to serve/deliver the nuts to make them more appealing. A few useful
new tips were learned (including blanching walnuts and hazelnuts to remove
their bitter skin, and that a defatted peanut flour exists commercially), and I
shared with her the high nut/low flour cookie approach we’ve been using. She reminded
me that we’re the furthest along in this (treating so many nuts
simultaneously), so just as we’re learning from them, they’re learning from us.
There was some surprise expressed at the fact that all the kids in the Xolair
trial have been able to updose according to the hoped-for schedule, and
especially that Aviv has been able to go so far in this at all… as the only
person in the country doing 5 nuts at a time – and being only 5 years old, to
boot – they apparently weren't sure if he really could. (Tell me about it,
sister…)
The deflating moment of the appointment came when I asked my
big Wishing Wall question, that is, are the boys considered allergic or not
allergic for purposes of camp this summer and school next Fall. I was told that
until they’re done with the study, they need to be considered allergic, with
all the protocols that that brings with it. So for camp this summer, we need to
maintain DEFCON 1 status (nut-free camps, reviewing snacks provided by the
camp, training the counselors in how their reactions present, getting a letter
out to the other parents, EPIs everywhere, etc.). I understand why, and know
that I need to be patient… I just don’t wanna. : (
I can even get my head around camp, as the
boys’ testing (on July 2nd) is after camp begins, but what about the
coming school year? Do we need to start another school year with the boys
carrying the ‘allergic kid’ label that gets in the way of them being invited
over for play dates (among so many other things)? And if so, at DEFCON 1, or at
a less scary-for-people level? I’ll revisit this topic with the SAFAR staff
after we see the July 2nd test results, but my current understanding
is that they’ll go through a bunch of tests on that date (including being given
amounts higher than the 4000mg/nut maintenance dose), and then if all looks
good, the boys will be released to follow a maintenance regimen, and then come
back 3 months later for blood tests to see if the body has maintained its resistance.
I believe that only after those tests come back clean will they be considered
not allergic. (I’m hedging as the protocol is a moving target, informed by
other research and trials taking place around the country.) I intellectually
understand why we need to maintain the safeguards until various rounds of
testing prove that their bodies have really changed, and know that it is
infinitely better to be safe than sorry. I just had in my head that they would
be able to start the next school year without their labels, EPI-pens and signs
in the classroom, and just need to revision the timeline. I still believe that
the day will come when we ceremoniously take off the Medic ID bracelets and
have ourselves a bring-your-favorite-nut-product party; it just looks like it might
not be before the Fall semester of classes begins.
Whining aside, let’s step back and wrap this on a high note:
the protocol is working. The boys' last Xolair shot was a month ago, so
the fact that they aren’t having reactions to their daily dose (and updoses)
indicates that their bodies are really being desensitized and doing all the
work; the Xolair isn’t there as a buffer anymore. That is an amazing result in
such a short period of time, and in all of the tough or slightly disappointing moments,
that is what we need to remember. We were at Aviv’s preschool graduation today –
milestone! – and several of the parents were asking about how the clinical
trial is going, and upon hearing, just hugged me and talked of how much of a
relief this must be. I was overwhelmed by the reminder of how lucky we are to have been at
schools with amazing teachers, parents and kids that have been so supportive of
the boys and their needs all these years. Thank you to all of you. We are very blessed.
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