It was 11 months ago – almost to the day – when we first met
Dr. Nadeau and took the first steps toward her changing our world. What a difference
a year makes, and what a big day today was… Ari has now graduated into
maintenance mode! He did a great job plodding through *8* dose cookies (each chock
full of 3 grams of nut protein) for a whopping 24 grams of nut protein today,
and he was totally fine. He had some difficulty swallowing at the end, but who
wouldn’t? He didn’t have any symptoms of a reaction, so it was deemed a clean
test. He also did a blood test and a skin test (both of which he stressed over,
only to say after, “Oh… it’s done? That was easy!”). They record the skin test
results in a really interesting way, where they mark the back and skin pricks
with a pen, circle the reactions, then put tape over it to capture the ink
imprint; that way they have a near perfect replication of the reaction. Because
of that, we were able to compare his skin test results today with his initial
one back on October 25, 2011 – there was almost no reaction whatsoever to pecan
and walnut today and they considered it a negative reaction. That was surreal
to see. He still had a skin reaction to hazelnut, but not that much more than
the positive control prick, which didn’t faze them at all. We were told that it
takes the skin a while to catch up to the body/blood, and that they expect
there to be about 6 months of maintenance before his skin test would show
completely clear; the fact that it did for walnut and pecan so quickly was a
pleasant surprise for everyone.
So Ari received his “Congratulations!” letter and moved into
maintenance, which means that he must continue having his 4 grams/nut/day to
maintain his body’s immunity to the nuts, but can have his dose at any time
without us needing to watch him or restrict activity. In addition, he can
freely eat things that don’t have nuts in them (but were made in a facility/on
equipment with nuts) without us around (that will open up a lot of relief for
him at school and play dates), and he can have foods with nuts in them (in
addition to his daily maintenance dose). We were warned not to let him go
beyond 8 grams/nut/day, as that is untested territory and may be too much for
his body. I’m sure that won’t be a problem for Ari, as getting to 4
grams/nut/day is hard enough, but we realized the challenge that accidental overdose
of allergens poses to others in the study who are being treated for items that
are very high in protein density, such as dairy or egg. For example, 1 egg
constitutes 4 grams/protein; that is someone’s entire daily dose. Have a few
slices of cake or pastries and you could easily go over 8 grams. We spoke with
one of the other trial participants who did just that last week, and
unfortunately had bad reactions. The grass is always greener… during the
updosing, it felt to us like those treating dairy and egg had it easier, but
now the risk of accidental overdose is much higher for them moving forward,
whereas we are unlikely to inadvertently cross the line.
Finally, before leaving, we were reminded that Ari is still
allergic, and must still carry his EPI-pen and wear his Medic ID bracelet, and
should still be observed for reactions when he’s eating nuts, especially during
the next year of monitoring. Until such time (if ever) that he can eat nuts
without being reliant on a maintenance dose (which is just medicine to support
his body), he will be considered allergic. That’s different than we thought at
the outset, and a bit sobering on an otherwise joyous day, but it makes sense.
It may be, down the road, that Dr. Nadeau or other researchers find that we can
decrease the maintenance dose and still maintain the immunity, but it hasn’t
been validated yet. They will continue to monitor Ari through periodic visits
(one in 6 weeks, then 6 weeks after that, then 3 months, and 3 months) where
they will do blood and skin tests each time, to track how his body is doing,
and we will contact them if anything goes awry. No more bi-weekly visits to
Stanford for Ari or keeping of dosing diaries each night. Truly unbelievable
that we are here in this moment.
As for Aviv, it was a big day for him as well. His updose
(to 14,000mg) went very smoothly, and while he has two more updoses to go
before his graduation day, the milestone that he reached today was surpassing
Ari in sheer volume of dose. While Ari will hold steady at a maintenance dose
of 12,000mg, Aviv moved beyond that to 14,000mg today (2800mg/nut), on his
journey up to 20,000mg. His body is being pushed to do things that haven’t been
done, and he’s so close to the finish. We had a talk with him tonight about
this big milestone for him, and tried to explain to him that he’s the only kid
in the world to be doing what he’s doing. That was hard for him to understand,
but when we told him Dr. Nadeau picked him to be the one, his eyes beamed with
pride. He has had such a beautiful connection with her from their first
meeting, and that connection has helped give him the strength to be brave. He also taught us all something new today,
stemming from his constant desire to ask questions and find alternate ways to
do things: apparently blood pressure cuffs don’t need to be worn on the arm;
the leg will work just as well (and apparently makes you smile more). Thank you Aviv, for always reminding us to
think outside the box about how to do things.
Finally, let’s not forget our two big patients… Orr and I
both had our blood drawn today as well for purposes of furthering research
around the hereditary aspects of food allergies. Aviv was proud to help Alicia with
the blood draw (he likes to hold the vials), and Orr managed to get through it (barely)
without Buzzy. With that, we close the chapter on Ari’s updosing, and look
forward to this next stage of the trial with a mix of excitement (finally!),
confusion (is this real and how do we explain it to people?) and trepidation (hey!
Where’s our co-pilot?). Stay tuned…
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