Food math and fingers crossed

Riiiing. "Hello?" "Honey - come quick and bring the albuterol!" My body froze. Orr was at tee-ball practice with Aviv, and I was home with Ari having some quiet time until Orr's call threw us into high gear. Without knowing what had occurred, I grabbed our bag of albuterol and other inhalers and other meds (antihistamines, topical and oral steroids, etc.), yelled for Ari to come asap, and ran to the car. Five minutes later ("It feels like you're speeding," Yes, Ari; thanks for pointing that out), we arrived and started getting Aviv under control. It wasn't the nuts that caused Aviv to start wheezing and ballooning up; it was plain 'ol environmental allergies triggering a reaction and asthma attack. He used to take significant amounts of daily medication to manage his grass/pollen/dog/cat allergies, but going on the Xolair at the start of this trial to suppress his IgE's (the things in our bodies that react to stimuli, such as food or environmental allergens, like pollen or cats), had the added bonus effect of enabling him to ratchet back his medication. (I just happened to find a note yesterday with his prior daily medicine regimen that must have been part of instructions to his nanny a year ago; I'm horrified at the laundry list of what it took to keep a then-4yo breathing well.) He still takes some antihistamines daily to help manage his environmental allergies (far less than in the past), but we had to stop them yesterday, as he goes in for his next round of tests at Stanford on Monday and shouldn't have any antihistamines in his system for 72 hours, lest they mask true test results. He was only out on the grass playing tee-ball for less than 30 minutes (with no antihistamines in his system) when he started wheezing. Lesson heard loud and clear: despite the amazing progress on desensitizing to his food allergies, antihistamines and inhalers are still very important for managing Aviv’s other allergies.

We acted fast and he was fine within a few hours, but it definitely put a bit of a damper on what was otherwise a fantastic dose day. Chef Tom’s reworking of recipes has paid off, with both boys being VERY pleased with the pecan waffles, the hazelnut crackers, and the mac-and-cheese (cheese sauce made out of cashews). Aviv even wanted seconds of the mac-and-cheese, and wolfed down his waffle. WOOHOO! That is certainly progress. They’re luke warm on the walnut pinwheels (liking them better as they're turned into mini pizzas), and Aviv rejected the peanut hot chocolate without tasting it, as the smell of peanuts was too prominent when he brought the mug to his lips. Neither kid wants to see, smell or taste the nuts they’re eating… I wonder if that will change with time. 

In the meantime, we’ll continue to work with Chef Tom on new recipes, and continue to engage in the nightly hour-long process of figuring out (and measuring out) the combination of foods that make up an interesting and complete dose for each day. For example, 1 pecan waffle + 1/2 pecan brownie = 1 full pecan dose; 1/4 cup cheese sauce with pasta = 1 full cashew dose; 2.5 hazelnut crackers with cream cheese + 1 hazelnut milk container = 1 full hazelnut dose; 1/2 peanut brownie + 8 peanut M&M's = 1 full peanut dose; etc.) The notes and lists that we make to keep track of all of this get more complex each day, but we're thrilled to get to see the boys enjoy some (sort of) normal food, instead of a string of big nut brownies.

Two 'take notice' moments since I last wrote...

I was disembarking from a plane the other day, and stopped cold in the aisle as I passed a row where someone had clearly eaten nuts and spilled half the bag on the floor. The boys weren't with me (and it wouldn't have been a problem for them even if they were), but I was horrified by the danger that this would have put our kids in previously. It actually made me a bit nauseous just thinking about it. I let the flight attendant know and asked that she call someone to clean up the spill as it posed a serious risk to people with nut allergies, but she didn't seem too concerned. Not having to fear those types of unexpected landmines again is a huge motivator for me in continuing to push forward with the boys' maintenance dose.

Finally, there was a bittersweet moment the other night when we were at friends’ home for dinner. The kids had finished their dose by 6pm, so they were free to eat whatever they wanted. Ari looked over the buffet table, and asked to have some of virtually everything that was on the table. And he did. And then he had seconds. Watching him enjoy the food (bought and made by various people, with no concern for label reading or from me), made me so happy; there was just a tinge of sadness that he’s – currently – only free to have whatever he wants when he’s finished with dose. When the day comes that the boys have no maintenance dose to worry about (or such a small one that it doesn’t take center stage in their mind), and can truly eat whatever, whenever… sigh... That will be amazing. I believe that we’ll get there. I’m wishful (but not wanting to get my hopes up) that when we go in to Stanford on Monday morning for their 6 week check (6 weeks since Aviv graduated; 12 weeks since Ari did), that we’ll see continued diminishment of skin test reaction and blood test numbers. The fact that Aviv has gone negative as to two nuts already gives me hope every day that they can go negative as to more. Fingers crossed.