We were on vacation last week – as far away as we felt we
could be during the trial, which was to Lake Tahoe – and for the most part it
was great. The ability to stretch their doses out throughout the day (since we
were with them all day) was incredibly helpful. There was still frequent resistance
from Aviv, who continues to not want to eat his dose. The promise of being able
to eat any breakfast food (after morning dose), any lunch food or snacks (after
afternoon dose), and any dinner food (after evening dose) is motivating for
Aviv, and that’s what kept him on track. Ari continues to eat his dose on
schedule, because that’s what he’s supposed to do, and that’s the kid that he
is. He was very surprised when a conversation about his ability to eat any
nuts, any time, came up… “You mean I can eat anything? Even something with nuts
in it?”, he asked incredulously. I reminded him that he graduated from
updosing, and was now in maintenance mode, which meant that he had to have his
dose each day, but also that he could eat anything else. I could almost see the
wheels turning in his head as he processed this information. “What do you want to
eat? Are there things with nuts you want to have?”, I asked. “I don’t know…”
was all he could meekly reply, backing away, a bit overwhelmed by the
possibilities.
Ari came running into our room tonight, excitedly calling to
me, “Ima! Can I take off my bracelet now, since I’m not allergic to nuts anymore?”
I looked from his expectant face to his worn Medic-ID bracelet that he’s had on
his little wrist since he was two, which informs the world of his allergies,
blood type and to call 911, and my heart sank a bit for him. He’s still trying
to figure out what all of this means, what his new ‘status’ is, what he can do
now… and who can blame him? I’m trying to figure it out, too. I told him that
Dr. Nadeau wants him to keep wearing his bracelet until more time passes and he’s
been through more testing, so she can confirm that his body continues to
remember what it was taught about not being allergic. He asked if that meant he
had to wear it until he was 9 – two years (the length of the study) from now. I
told him it was a great question and that he should ask her when he sees her
next. He nodded and then asked when the study would REALLY be over, as he doesn’t
want to have to eat his dose forever. Who can blame him? I told him that Dr.
Nadeau and others are doing lots of research to figure out how long people need
to keep eating their dose, and until then, he needs to keep eating it. That was
not what he wanted to hear, but that is certainly the state of the medical
research.
Speaking of, you may have seen stories recently about food
allergy desensitization work (or oral immunotherapy “OIT”) in the news, as a
new study was published last week in the New England Journal of Medicine by a colleague of Dr. Nadeau’s (and pioneer in this space), Dr. Wesley Burks,
about the egg allergy desensitization trial that he conducted. The story was
picked up by CNN,
Time and others, all of whom presented the research as very exciting and a
cause for optimism. I couldn’t help but be excited, too, thinking this treatment
path is finally ‘reaching prime time’, which means both the recognition of its
efficacy, as well as support, will hopefully increase. Even the Mayo Clinic’s website (under Food Allergies: Experimental Treatments) discusses OIT as looking ‘promising’ as a treatment. As I read aloud the
articles to Orr and others last week, Ari & Aviv listened intently. We know
firsthand that OIT works; we live it every day! That’s not news to us. The big
wildcard is whether the immunity can be sustained without the daily dose. In
Dr. Burks’ study, after desensitizing 75% of the patients who did the egg OIT
over a period of 22 months, the patients were then told to stop taking their
daily dose (or any egg consumption) for 4-6 weeks. After that, only 28% passed
their oral food challenge. So while it appears that some continued ingestion is
needed to maintain the immunity that can be built up through OIT, only time
(and more research) will tell how much and how often. So where does that leave
us? For now, continuing on with large daily doses, to be sure. It’s still a
little unclear to me how we’re to handle school in another month… assuming Aviv
graduates into maintenance mode next month without issue, do they need a nut
free classroom, or not? Can they eat any food given to them when we’re not
around? So far Dr. Nadeau has recommend that we don’t change the protocols in
place at school, but it could be confusing for some (including A&A) to send
them to school with their doses (as we’ll need to do, in order for them to
spread out the doses throughout the day), but then have other restrictions.
This is an area we’ll continue to explore with her. It’s not just an issue of
confusion or logistical challenges; it’s one of inclusion and fitting in.
Safety first, to be sure, but we’d like to ease the restrictions for them where
we can.
---
A friend who I hadn’t seen in a while asked me today if we
decided to stay in the trial. Last time I spoke with her, we were in the middle
of an especially rough patch with the boys’ ingestion and we weren’t sure we had
the strength to continue. In explaining to her why we decided to persevere, I
told her that while sticking with the daily doses is hard, living with severe
food allergies is harder, and if I have to pick which hard thing to do, I’m
going to pick the hard thing that protects them, rather than the hard thing
that puts them back at risk with every touch of a library book or door handle.
Such are the decisions we make all the time, right? Which hard choice is the
best one for our kids/our families? That’s the most important job we have as
parents. So with that in mind, tomorrow Aviv heads back to Stanford for another
updose - likely a 25% increase from 14,000mg to 17,500mg – and I can only
imagine how he’s going to react to eating more. The good news is that while he’s
intellectually opposed to the doses, his body seems to be tolerating them just
fine, without any reactions. There’s so much that he understands beyond his five
years, but this is one of the areas where we just have to make the tough
decisions for him, push him to continue, validate his emotions when they spill
over, and encourage him along the way until he’s able to understand the value
and motivate himself.
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