All of the tweaking of the dosage worked! At the boys’ last
visit at the end of May, Dr. Nadeau looked at their skin tests and confirmed they
went negative to all of their nuts. ALL OF THEIR NUTS!! It’s hard to believe. So
in the vein of ‘trust but verify’, the results were checked against their blood
test – also negative! – and then food challenges. Since they’ve dropped their
daily dose to somewhere between 300mg and 2G per nut, Dr. Nadeau wanted to make
sure that the boys’ bodies could still tolerate a full 4G dose. All but one of
the nuts have now been challenged, with no reaction to any of them. Triple
validation, it is! Never has a determination of ‘negative’ felt so positive to
us. We are still supposed to carry EPIs
and rescue meds (Benadryl, etc.) just in case, as this is still a clinical
trial with data being gathered and analyzed all the time, but there is a
feeling that the boys are in a steady state of being negative to nuts, which is
like a dream come true.
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Speaking of EPIs, we just replaced our army of them (6 twinsets!)
as we do annually, leaving us with a bag full of expired EPIs. We decided the
kids are old enough that they should be more familiar with how to really use
the pens, so we let them each practice responding to an allergic reaction and
deploying an EPI on a lemon. (Citrus fruits are good to use for this, as their
peels are strong enough to simulate skin, but not so slippery – like an apple –
where the needle can slip.) They both seemed very proud of themselves to be
able to do it themselves, and took turns practicing what to say to 911, how to use
the EPI, etc. How they’ve grown and matured along this journey has been
inspiring.
In addition to the big news, some firsts and sweet moments
over the past month…
-the boys tried their first CrackerJack, and joined
generations of kids before them in being confused by the strange prize inside.
-classmates’ families brought us meals to help us out during
a tough time, and we were doubly grateful, realizing we never could have
accepted that type of help (of food from contaminated kitchens) before.
-Daily dose continues on without any hitches or arguments. Aviv
has continued his exploration of things to eat with his dose, finding that
lemon curd is an excellent topping to a dose brownie. Orr also made him dose
crackers that go well with melted cheese, apparently. Ari alternates between a straightforward
dose cookie or dose brownie, leaving topping creativity to Aviv.
As excited as we are about each ‘first’ and the overall
results, the boys seem quite blasé about it now. A friend – who had us over for
the first time, and admitted that she didn’t previously because she didn’t feel
she could make her house safe for us – watched Aviv eating his nuts and said to
him, “It’s a miracle! You’re a miracle! Do you feel like one?” In response, he
barely raised his eyes up from his snack to shrug, “Neah.” While he may not feel like a miracle, he is
aware of the importance of this work as being bigger than the two of them. Every
Friday night we have dinner together as a family, and each person answers three
questions: what are you grateful for that occurred this week; what was hard for
you to do this week, but you did it anyway; and what did you do to make the world
a better place this week. To the last question, Aviv recently answered that he
gave blood for Dr. Nadeau’s study to help other kids not be allergic, too.
Making the world a better place, indeed.
