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.

Sweet servings of waffles and hope

Well, the great food experiment did not roll out quite as smoothly as hoped for. The boys rejected most of the new foods, either based on texture or quantity (a cup of curry walnut sauce, for example, is a lot when your tummy is very small…). I asked A&A to bear with me as we tried a few different approaches and techniques with the food, and we found some winning combos, some duds, and a lot of lessons learned. Don’t judge me when I tell you nothing was too weird for me to try to get the food in, and thankfully, Ari indulged my crazy: one of his favorite concoctions was a pecan waffle sandwich with turkey, mayo and pickle inside. (Direct quote: “This. Is. AWESOME.”) The pickle has a strong enough taste that it masked the nuts, resulting in waffles down the hatch. If it works, don’t knock it. The clear winner of the new items was the pecan waffle, followed by some pecan crusted chicken bites. Both sauces were rejected, and the dip was eaten a few times, but only when smothered with something else (usually in a wrap with cheese). The hazelnut & walnut crackers were good in that they allowed for a ‘two-fer’, but were too crumbly.

While Tom is going back to the cutting board to rework the recipes (heeding Aviv’s cry of “more cheese!” and my request for more dairy and flour to bind things), we did our best. Orr was away all week (allowing for my crazy food combinations to occur; normally the kitchen is his domain and I stay out), but he returned today and turned the hazelnut & walnut crackers into crust for beautiful little quiches. (Thank goodness he's back!) While the particular recipes in this first round weren’t big hits, what was an important lesson to learn is that the ability to separate out dose by nut enables mixing and matching and variety, which means greater satisfaction for the boys (although WAY more time in planning out the day’s meals for me). Instead of being bored and tired from 3 nut-combo brownies per day, Ari was able to eat a waffle with honey for breakfast, trail mix, hazelnut milk, a turkey/pickle/waffle sandwich, a broccoli quiche and a few chocolate covered walnuts (as well as regular food) today, resulting in a much happier boy. Aviv stayed mostly in his brownie comfort zone, but branched out for the pecan waffles. I am hopeful and confident that Chef Tom will hone the menu and be able to come back next week with some items that hit the tummy, or mark, for the boys, and continue to be grateful that he’s taking on this challenge.

We added a few new food firsts this week, when Ari, ostensibly joining me for errands, ended up eating his way through town. We've determined that he's a big fan of wraps (previously off limits due to nut ingredients in some of the wraps) and chocolate covered almonds. If only almonds were one of the nuts he needs to eat each day, but it isn't. That would be too easy.

I also felt fortunate this week to have Dr. Nadeau in our neck of the woods… she came to speak to medical professionals and community members at our local community hospital about the amazing work that she and others are doing to recognize and treat food allergies. It was such a treat to meet several of you who I’ve emailed with or shared information with over the years, and I was thrilled that some many doctors and parents came with open minds and great questions. The work that is occurring - researching genetic linkage, developing a better way to test food allergies than the current method of scratching the skin with claw-like devices, working with the FDA on having so many trials approved, bring to proof of concept (near treatment-ready) gelcap treatment of peanut allergies – is just mind blowing. Avoidance will not need to be the only answer for allergy families in the future. For those of you living with the stress of food allergies: there is hope, and it is real.The data is bearing out at various trials around the country that the desensitization protocol works and is safe; the challenge is figuring out ‘the next edge’ - how to maintain it short of 4grams/day. She spoke of prevalence and higher risk situations, for example a child  born to one parent who has asthma or food allergy has a 65% chance of being allergic to food allergies, and a child born to two parents with that criterion has an 85% chance of being allergic to food allergies. Wow. She’s also interested in what the data will show down the road for the next generation of kids of individuals (like Aviv) whose DNA was modified through desensitization.  (I’m guessing he and his data will be followed for some time…)  Some really big movement is happening exactly when it needs to – that is, NOW, when both the prevalence of food allergies and their severity has increased so dramatically – and we are very lucky to have Dr. Nadeau working fast and furiously (but always cautiously!) to learn more and get the word out. She also shared that she is actively recruiting for 3 studies right now: an oral immunotherapy wheat trial, a peanut patch trial (a dermal patch; no ingestion), and a peanut trial for kids under 48 months old. If you or anyone you know fits the criteria of those open trials and are interested, contact SAFAR asap. 

Finally, I have to share a beautiful emotional moment I had on Monday at synagogue, but not during the prayers or for the reasons one might think. I brought the kids to the onsite child care, hoping to leave them there for an hour so I could have some quiet time in the service. I gave the check-in lady their names and some cursory info, and then she asked whether the boys had any food allergies. I froze. I had answered this question hundreds of times in their lives, including many times at this particular synagogue (probably to this same woman), but froze this time. I was standing next to a mom whose child was in preschool with Aviv, who knew of A&A’s journey through the trial, and we just looked at each other for a moment. She raised her eyebrows and started to smile, which gave me the courage to turn to check-in lady and announce proudly, “for these purposes, no… they don’t have any food allergies.”  It felt so big to say that in the same place that last year (and the years prior), I had launched into my safe cross-contamination protocols speech and EPI-pen training.  Check-in lady was not impressed by my pronouncement, marked a box on her form, and moved on to the next family, but I remained in my internal emotional swirl, profoundly aware of how far we’ve come. It was a sweet, reflective way to start the new year.

Days of awe, indeed

More good news to report! It’s actually been – relatively speaking – a good week. Both kids finished their dose by 6pm each day, which means they are finished by the time I return from work, enabling us to have a normal evening that isn't spent around the kitchen table arguing over the last few bites of dose. We actually get to hang out and enjoy each other, and it feels great! The boys have gotten into a groove where they have one piece of their dose in the morning before school, and then take two pieces in their lunch (without much else; a few bites of fruit, a cheese stick and maybe a quarter of a sandwich, but that’s it), and they are both finishing their dose by the time they come home. (Thanks, teachers, for encouraging them to eat their dose at school!) As part of my throw-all-previous-parenting-rules-out-the-window approach, I've taken a page from the corporate world’s playbook, and have incentivized my consumers. In kid speak, that means I've promised them that if they finish their dose by 6pm, they can eat anything they want afterwards and watch a few minutes of TV (previously reserved for very special occasions), and it seems to be working. While there are a few caveats (they need to have a vegetable as part of their ‘anything they want’, and must stop all eating by 6:45pm so that they’re not too full the next morning to start the whole cycle over again with their morning dose), they mostly have free range to choose, and what’s interesting is what they pick… chicken strips for Aviv (always; he insists the nanny text me on the way home to confirm that he’s finished his dose so that I stop at the store to buy him some) and sometimes a piece of dried fruit or a cracker, and real dinner for Ari (beef, salad, chicken, Chinese food, etc.). Neither of them want dessert, or at least not any baked goods. 3 big brownies or cookies a day can take the fun out of that for you.  

Not to fear the drudgery of daily cookies/brownies, however… Those days are (hopefully) soon to be behind us. Chef Tom said yes! He spent the past week doing an amazing job of researching nut recipes, running sample menus past us, and confirming details… apparently soaking nuts helps both the taste and malleability for cooking, but letting them ferment may  change the protein properties, so Dr. Nadeau drew the line there. In addition to the taste challenge, Tom also has to figure out how to make enough food for the week, in portions that match up to the daily dose requirements, with detail for us regarding which foods have which nuts (and how many), so that we can replace items if the kids don’t want to eat something on a given day. He’ll do a variety of items, with some sauces to give us the ability to change up the underlying food. For the first week, we’re looking at:

-Pecan waffles for both kids

-Cashew-peanut sauce for Aviv (to put on top of pasta or rice)

-Coconut curry walnut sauce for Ari (to put on top of pasta, rice, or meat)

-Hazelnut sweet potato cheese shmear for  Ari

-Hazelnut and walnut crackers for either

-Pecan-crusted chicken strips for either

If each kid eats the identified portion of each of the above, that should cover their daily dose. I am very thankful that Chef Tom has agreed to take on this puzzle, and Ari already told me how excited he is… “I LOVE sauces!” he exclaimed. Got to love that boy, but not to be outdone by Ari, Aviv announced that if Chef Tom can figure out how to get nuts into chicken strips, he would would like to give Tom all of the money that he has been collecting in our Tzedakah (charity) box. We’ll get our first food delivery Monday night, and will test drive Tom's plan on Tuesday. Fingers crossed.

But before open season on nut sauces and nut waffles commences, our family will be observing Rosh HaShana, the Jewish New Year. Rosh HaShana is the first of ten days (ending with Yom Kippur) referred to as the ‘days of awe’, in which we are supposed to take part in self-examination and repentance. It is a time of reflection of one’s actions over the past year, and commitment to how one wants to live their life in the coming year. We eat apples and honey to symbolize sweetness and welcome in a sweet new year. As I look back at this past year (rereading this blog from the beginning for the details that have since run together in my head), I am truly awestruck by how far we have come. At this time last year, we were scheduled for our formal screening and first double blind food challenge with the SAFAR team, but nothing had occurred; we hadn’t even been admitted to the trial yet. We were hopeful about the research that Dr. Nadeau was doing, but had very little information to go on, and couldn’t even really imagine what life would be like, either during the trial, or after. Our biggest fear was that the boys would have reactions each night when they ate their dose, a fear that only came true one night – the first night! – but not after. We could never have imagined, as we reflected last year at this time, what this year in fact held in store… safety and fear, piece of mind and tears, opportunities and limitations, strength and exhaustion, freedom, questions, perseverance, bravery, growth, learning, and so much more. 

As I reflect on this year, what I want to do most of all is hug A&A. I’m so, so proud of them for persevering and trusting us. What must it have felt like for them the first time they were eating their dose, knowing they were eating something we’d always told them was so dangerous? I still remember Aviv lying in the hospital bed six months ago, staring silently at his first peanut M&M, before raising his eyes to meet mine, whisper to me that he was scared, and ask if I was sure it’s safe to eat. How truly awesome, in the intended sense of the word, is it that they can now eat anything? That this study worked? How far we’ve come in one year... How much we have to be grateful and thankful for… As I look deep inside myself at this time of year and put together my list of repentances, I hope that we’ve lived our lives in ways that have made the world a better place this past year, because the world (and so many special people in it, including so many of you) has certainly made our lives better. 

While apples and honey symbolize sweetness, nuts - which used to represent fear in our world - have come to stand for strength, health and hope in my mind. (We've 'taken back the nut', as it were.) As I make my traditional kugel this year for Rosh HaShana dinner, maybe I'll add nuts to the sweet mix to help ensure that they and their new attributes are a welcome part of the coming year. Warmest wishes from our family to yours, that you have a sweet, healthy, happy, strong and hopeful year.

The most powerful superpower

Great news to report! The last three weeks of Aviv having *only” 67 nuts/day have been infinitely easier than the previous weeks and months, and we are so thrilled. He’s doing it with only minor/occasional push back; nothing like the knockdown, drag out fights of the preceding month. I believe that seeing that there is something to work toward – that is, that his body might go negative to more nuts, thereby further reducing his daily dose – was motivating, and he’s back with a different commitment and energy. Ari continues to move forward with his as well, rarely complaining, but not thrilled. Both kids used to really, really enjoy food, and while I don’t hear any more cries to be freed from the study, the enjoyment of food is gone for them as they find themselves always full (from dose) or needing to eat more of it. Ari told us the other night that he was sad because it was 5pm, all he had had to eat that day was dose, and he knew that when he finally finished his last remaining piece, he’d be too full to eat anything else. “I just wish it could be like it was before, where I could eat normal food.” Ouch.  (I mean, great that he thought he was eating normal food before, but ouch that he feels the loss now.)

So we moved into action, once again, to try to regain some normalcy for the boys. We’d talked of hiring a chef previously, but talked to a few who said they weren’t up for the challenge (or didn’t understand what we needed), and had decided to move forward with Orr’s amazing baking. He’s done an above-and-beyond job at hiding the nuts in 3 brownies/cookies per day, but the kids are missing real food… pastas, chicken, waffles… ahh, the waffles that they used to savor. Finally, this weekend we heard: “I think it’s doable.” Ahh, such sweet words! Those came from the mouth of a personal chef we met with, after asking him to do the near-impossible: make normal food that the boys will want to eat (real food; not chocolaty treats), that has their full dose subsumed (not visible), AND be able to tell us how many nuts per portion so that we can manage the numbers. He specializes in cooking for people with food allergies and he definitely understood the challenge, spent a lot of time with us to understand all of the parameters, and while he didn’t give us a 100% “Yes, I’ll do it!”, he seemed optimistic and intrigued by the challenge. He’s going to do more research and get back to us, and I’m keeping fingers crossed. He spoke of mac and cheese (with the cheese being made from cashews), and lasagna (with ricotta being made from nuts), and waffles (made from nut flour)… this could really help the boys feel like their lives aren’t as crazy as they really are, which would help everyone’s emotional state. When we shared the news with the boys, Ari lit up and said it would be “like we’re back to how it was, but eating nuts!” Stay tuned and keep your fingers crossed for Chef Tom to come through.

We had some sweet moments and more firsts, as well, over the past few weeks:

-At a Bat Mitzvah for a dear friend, the luncheon afterwards featured a dessert table. As if the food theme was ‘nutpalooza’, it seemed every dessert contained, or was covered in, nuts. In the past, we probably would have felt so uncomfortable (even though we would have brought our own food) based on the risk of contamination from all of the other kids touching the desserts and then touching the tables playground equipment, that we would likely have left. Instead, we felt comfortable staying and even let the kids choose anything they wanted to eat from the table; that definitely blew all of our minds. The yummy goodness that are cake pops also blew Ari's mind...

-Bringing home the Chinese chicken salad that I used to love, but hasn't been in our home for years, due to the slivered nuts. After his initial pause upon realizing that there were nuts inside it, Ari loved it. He pushed the nuts to the side of his plate and ate the rest of the salad, but at least he ate it.

-We went to one of our favorite neighborhood restaurants, where they know us and automatically let the chef know (when we walk in) that we’re there, so that he can begin cleaning utensils and pans to ensure that no cross contamination occurs. (Shout out and thank you to Harmony Restaurant in Mill Valley.They have always gone out of their way to make sure we felt safe letting the boys eat there.) As we sat down on Saturday, Ari perked up and said, “Hey! They don’t need to do anything special for us! We can eat anything!” While that may sound obvious to you, we are still internalizing this new world of ours, and hadn’t made the connection until he said it. We called over the head waiter and were so proud to share our good news with him, and he was so excited for us. He had already, of course, let the chef know we were there, and said he’d be happy to tell him he could take it easy. The food never tasted better there than it did that night.

-Beginning a new school year, and being so aware of how different things are from last September. No special protocols in the classroom, no wipe down of the school bus seats, the (virtual) confetti that was thrown when the teachers announced during orientation that there weren't nut-based restrictions on lunches, and the genuine happiness that we felt from other parents and teachers when we told them the boys had been desensitized... not happiness because they could send PB&J's, but happiness because they knew how stressful things used to be for us.

Finally, for a little insight into the 5 year old perspective on all of this… Aviv was explaining to Orr yesterday about Green Lantern’s superpowers. “His power comes from his ring,” Aviv explained, “and it’s very powerful. Like if he had allergies, then his ring would make it so that he doesn’t have allergies anymore, without even needing dose!” That really is the apex of superpowers for Aviv… not flying, or x-ray vision, but being able to make allergies go away without needing dose. We’re doing our best to be (or find) that superhero, guys; just hang in there!