We
experienced more joys this past week, such as getting an ice cream from the ice
cream truck at the park on a hot afternoon, eating baked goods from a booth at
a festival, and going to a new restaurant and ordering without interrogating
the staff. We love the freedom of each of those things, and we took the
opportunities to remind the boys of it… with as hard as the dosing is, it’s
important that we tie it back to the rewards they’re able to see/experience.
The
complexity of the dosing has increased along with the dose amount itself, as we
need to split the dosage up even more throughout the day. (Every 2 weeks is a
new puzzle!) It doesn’t help that Aviv has an ear infection right now,
increasing the number of things he must ingest daily by adding antibiotics and
probiotics to his new daily repertoire of 4 dose cookies, 1 container of
hazelnut milk, 9 peanuts, and 2 Zyrtec (to manage his environmental allergies).
Seriously – I wish a partridge would leave its pear tree and come over here,
just to help us keep track of the litany of items. As Orr experimented with new dose cookies last
night – these ones color coded French macaroons – I developed a medicine chart
for the boys where we can check off what has been given each day. While he
spent 3 hours in the kitchen weighing, measuring, mixing and creating beautiful
meringue (and countless hours prior, researching tips such as when making nut
flour, add powdered sugar to nuts in the mixer to helps prevent it from turning
sticky/into nut butter), and I developed their dose chart, wrote instructions
for our nanny on how/when to give, and handled other aspects of the
administration of A&A Incorporated, we got to talking about whether this is
something we would recommend for future trials/treatment. That is, if asked,
would we recommend that a child as young as 5 be allowed to treat 5 nuts
simultaneously. Honestly, I don’t believe it is very doable under most circumstances. I think either
part on its own could work… treat 5 allergens simultaneously (provided that at
least two of those are high-in-protein-density/non-nut allergens), OR if 5 nuts
are to be treated simultaneously, try to ensure that the subject is older, follows
directions (even when it’s very hard), has support (especially around food
preparation), and has strong stick-to-it-iveness. We have all possible things
going for us (well, except for a 5 year old that follows directions well), and
it’s been extremely challenging. I’m not sure what we would have done had Orr
not been as experienced and creative a cook as he is. There is one family in
the trial who told us that they just insist their kids eat their nuts plain -
without any sugar or fanfare – and we
watched in awe one day as that occurred. To be fair, their kids are older than
ours, only have a couple of nuts to treat, and aren’t as far along in the
dosing as our kids, so the wheels may get wobbly on their bus too. Even if they’re
able to keep it up, is it reasonable to expect a 5 year old to sit down and eat
102 nuts (Aviv’s final dosing amount) each day without throwing a fit? Maybe it
just depends on the kid. I believe that if he had to, Ari would follow
directions and eat however many nuts, in whatever form, we directed... he’s
just a rule followin’, stoic kind of kid, G-d bless him, and it’s not about age;
he would have done that at 5, too.
---
So after all
of that work last night, the boys came to the breakfast table this morning, saw
their macaroons and started complaining… too big, too high, too flaky… it took
a lot of restraint to not blow my top, after all the work that had gone into
them. Ari ultimately sat and ate one without another word, but Aviv dragged his
feet for the next 45 minutes, frustrating everyone. Splitting up the dose
throughout the day has been incredibly helpful, but it does mean that
breakfasts have effectively been replaced by dose cookies and that we often
leave for work (and they for school) having already gone to battle. We now have
situations that we always swore we would never let happen in our family, where
we’re fighting over food. We decided early on with the kids that we wouldn’t
force them to eat (“they’ll eat when they’re hungry… no kid that has healthy
food available to them will starve”, our pediatrician told us long ago), as
doing so sets up power struggles. Never say never, because here we are: the breakfast
table is power struggle central. The
irony, of course, is that after the morning tactics wore us down, Aviv
proceeded to eat the rest of his dose throughout the day without a fight. Hallelujah.
Another day done, with a flurry of check marks on the medicine chart (& two exhausted parents) to prove it.
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