100% success rates - beat that!

I just returned from the most inspirational evening. The SAFAR Community Council (which Orr & I participate on) held an event tonight to share some of Dr. Nadeau’s research advancements, and we heard from families sharing their stories – both the challenges of parenting kids with food allergies, and the freedom that comes from being cured. We all listened, shed tears at some of the stories, and connected deeply with others who understand the weight of it all. I loved meeting people who I’ve only known through emails, who told me they read this little ‘ol blog, share it with others, and feel like they know Ari and Aviv from these stories.  I'm so touched. Your stories inspire me, too. Congratulations to John, whose daughter is about to graduate from the peanut non-Xolair trial after two years – such a long road and a huge accomplishment! Also to Bernie, whose daughter, after 3 years of waiting, is #37 of 40 slots that have just been opened up for a new multi-allergen non-Xolair trial, thanks to a grant of funding that SAFAR has just received. Dr. Nadeau told us there are 800 families on the wait list to get in to one of her trials… if you are among them, hang in there. SAFAR is the only food allergy research center west of the Mississippi, and the only one in the world doing multi-allergen studies. 100% of the children who have finished Dr. Nadeau’s studies are cured. 100%. If you haven’t yet given to support Dr. Nadeau’s amazing work, and you are able to, please consider giving: https://www.supportlpch.org/SAFAR . Lisa, a teenager who graduated from one of Dr. Nadeau's earlier trials, shared her experience tonight as well, and talked of the treatment as being “possibly life saving; positively life changing.” Couldn’t have said it better myself.

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For those of you who were concerned about how we’re doing, we’re good. A friend gave me a book yesterday: Don’t sweat the small stuff for Moms – it’s a must for busy moms (and which moms aren’t?) who want highly concentrated humor and life lessons all rolled up into short vignettes. I loved the authenticity of the first vignette where the mom tells her child, after a not-so-pleasant incident, “I’m not ok, you’re not ok, but it’s going to be ok.” It is definitely going to be ok. (“Y’hi’yeh beseder”, for the Hebrew speakers out there.) We’re tinkering with and figuring out the doses, getting nutritionist referrals, and the entire SAFAR team gave me a hug tonight and affirmed for me that this is hard, that we’re all in this together, and that we will get through it. I trust them implicitly and look forward to moving forward and blazing some trails to make this easier for our kids and the ones that follow them. “Possibly life saving; positively life changing”… we’re all in.

Bouncing back

You may have noticed that yesterday’s post was on the darker side; not the usual optimistic, celebratory posts that I’m used to writing, and I questioned whether to share it. It was a tough day and the emotions of overwhelm (good and not) collided. I guess some of those moments were bound to happen. Ultimately, I decided, this blog is about our journey, and not all stops along the way are fun or scenic; some are rough and you wish you could just keep on driving by, but you document those too, if only to help you remember where you’ve been and where you don’t want to go back to. Yesterday was definitely my ‘Toto, we’re not in Kansas anymore’ epiphany… the moment when I came face-to-face with the not-so-shiny side of being in a clinical trial and to being among the first people to try out this multi-allergen, accelerated protocol. Not all the answers exist yet; there are just hypothesis that we are among the first guinea pigs to validate or disprove, and we need to be ok with that uncertainty. I feel like there are a couple of important unknowns for us at this point… whether it is truly doable logistically (not just medically) for a child to desensitize 5 nuts simultaneously, especially when the 5 include varietals that are low in protein percentage (like walnuts and pecans) and thus require ingestion of larger volume, and what type of support (Emotional? Nutritional? Other?) is needed to sustain participants in this accelerated process.

I have to admit that we were in denial from the beginning about the amount of nuts the kids would need to ingest at the end of the trial. I mean, we weren’t told it would be 100+ per day, but we were told, at a high level, that it would be hard (in fact, we were told straight out by another doctor that the reason he wasn’t desensitizing multiple allergens at the same time was due to the impractical ingestion volume that would be needed), but we were so excited that we half ignored the warning/half decided we’d deal with it when the need arose. Time to pay the nut-dispensing piper; the need has arisen. With every incentive in the world to make this work (and a taste of what a normal/not–anxiety-filled life is like), we will throw ourselves into figuring out how to do this, and hopefully can help others that follow us, as well. I have feelers out to find a great dietician/nutritionist to advise us, as well as a therapist to help the boys process all of this. (Any recommendations from you, gentle readers, are certainly welcome.) I also need to talk with Dr. Nadeau about this wave of concern; she is always so honest and reassuring and I know that she’ll help us figure it out.  I’m grateful that she – along with all of you - are part of our support team as we bounce along this windy, rocky road. Thank you.

The bigger they come…

… the harder they fall. As euphoric as I’ve been the past two weeks over our newfound freedom from things that are made in a facility with nuts, I hit a pretty hard wall today at the boys’ updose appointment. They’ve now moved to 5800mg of nut protein/day and are on track to get to the end goal of 4000mg of nut protein PER NUT they are allergic to, by the end of the study. For Ari, this means ingesting 12,000mg (12 grams) of nut protein, and for Aviv, this means 20,000mg (20 grams) of nut protein per day. An incredibly large number of nuts are needed to meet those numbers. I actually ran some quick math, and I believe we’re looking at – caveat: math is not my strong suit – around 55 nuts/day for Ari and 102 nuts/day for Aviv at the end of this study. That's not a typo. I am hoping that my math is as bad as I’ve always believed it to be, as I can’t fathom how we logistically make that happen. What caused me to hit a wall today was the realization that we need to get 5800mg of nut protein into them each night. More specifically, it was watching Aviv struggle with choking down his 7.5 dense pecan halves and 4 bitter walnut halves (on top of the 5 peanuts, 6 cashews and 6 hazelnuts that he likes more, but were still too much for him). He was angry and lashing out during the updose appointment, crying and yelling how much he hates the nuts and he’s not going to eat them, and that they taste terrible and that he’s too full to eat any more… it was pretty miserable for everyone on the ward that could hear him. I couldn’t blame him… In addition to the bitter taste, I don’t know that I could eat that many nuts in one sitting with my grown up-sized tummy; how could he do it with his little 5 year old tummy? To mask the taste of the nuts, some are dipped in chocolate, some are mixed into puddings… each of these techniques adds sheer bulk/volume, which just means more to cram into their tummies. Don’t even get me started about the amount of sugar they’re now ingesting daily (in the evening) as part of the chocolate enrobing, just to mask the nut taste.

So as I sat there fighting with Aviv, my heart sank and my head raced as I felt overwhelmed. Where did the euphoria go? Was it going to be this rough every day? How were we going to make the walnuts and pecans (in particular) more palatable without bulking up on unnecessary volume? How could they possibly eat dinner after this (and I certainly don’t want them eating dinner before, and filling up their tummies)? Was Aviv going to get so frustrated that he’d turn his determined (read: stubborn) energy into fighting this, and jeopardize the work that has been done to date? And while this volume is huge, it’s going to get bigger in 2 weeks, and bigger still in the weeks that follow… was treatment of this many allergens simultaneously even logistically doable for kids this age? I finished forcing the last of the dose into Aviv (Ari wasn’t thrilled either, but he’s a rule follower, so he finished his dose without a fight), put on a movie for them as a distraction while we watched them for reactions for the next hour or so, and went to talk with the SAFAR staff. Maybe this just seems harder than it is, I thought, and I just need to talk with another family that’s further along in treating walnuts and pecans to learn from them.  Well, it turns out that we’re charting more new territory than I thought… no one else is treating 5 nuts simultaneously (some are treating 5 allergens, but not all are nuts, and they have much less volume to ingest with dairy or egg, for example), and no one is ahead of us with pecans and walnuts. So when I ask the question of whether this is really doable, any response is necessarily based on assumption and speculation… no one has actually done this with this many nuts. It also turns out they’re seeing some ‘soft’ needs with the families in the Xolair trial (that they haven’t seen with families in the standard/non-Xolair trial) around nutritionist/dietician support (to figure out how to get these amounts into our kids without jeopardizing their health in other ways) as well as therapy (to deal with the surreal changes that are occurring). It makes sense - our trial is moving and changing people's lives so fast that the emotional and operational parts of our brains are having trouble keeping up with the physical changes. One of the pieces of data that stuck with me from our months of interviewing doctors about oral immunotherapy/desensitization before joining the trial is that the only reason that there isn’t 100% success with desensitization trials is that not everyone can handle it; the protocol works, but some drop out along the way because it can be very hard to stay with it. It may sound crazy to say that, after the 2 over-the-moon weeks we’ve had, I was doubting myself about whether we could really stick this out – not just for a few more months, but forever. The reward for continuing is so huge, but the amount of nuts we’re talking about is daunting, and the struggle that occurred with Aviv today can’t happen daily; it’s just not sustainable.

After a short cry there with the SAFAR staff (I was overdue for one, really) and my emotional tornado finished passing through, I took a deep breath and started brainstorming solutions for where we can get some solid nutritionist/dietician assistance. So many questions... does the nightly dose replace dinner, for example? Should other proteins be removed from their diet? What can mask the nut taste in as low volume a way as possible? Can we use the nuts in their dinner, like coating chicken with them, instead of drowning them in pudding? I started emailing specialists and resources in our community tonight, trying to line up help. Making lists and  executing on game plans is comforting for me, actually, and this was a time where I needed some comfort. I know that we’ll figure this out, even if it feels bigger than us right now. As I tried to calm Aviv down this afternoon, I reminded him of his own words from last month - “I’m brave, and I know that even if it’s scary, I can do it.” As is often the case, Aviv’s depth surpasses his age, and I’m taking his words to heart, as well.

Firsts and more firsts!

So if 11 days ago I wrote that our minds had stretched themselves to the point of hurting since the boys were cleared to eat foods that might be cross-contaminated, I can now report that our tummies have followed suit. We have spent the past two weeks eating ourselves silly around Marin, exploring restaurants, store aisles and foods, and engaging in behaviors that seem remarkably unexciting, unless, of course, they have been off limits to you for years.

The boys had many firsts (and many items were checked off on the Wishing Wall!) over the past 2 weeks: first trip to Jamba Juice, first Zbar, pizza places, ice cream parlors, bakeries and more bakeries, petit fours, éclairs, samples in Costco, fresh breads, pastries, pesto, a sandwich from a food vendor… I wasn’t kidding when I said our tummies hurt! In addition to enjoying watching the boys eat and experience new foods, it was the little things that we were finally able to do. Orr has been out of town for the past week, and I decided to take the boys all over this weekend… for smoothies, to an Earth Day festival, to a store to get popsicles, to parks, exploring at Costco, and to a pizza place with friends. Normally, even with Orr, we wouldn’t have included those food-related stops, as the locations didn’t have safe food for the boys. We would have gone to the festival and parks, but I would have been nervous the whole time about what the boys were touching that could have nut oil residue on top. We certainly couldn’t have eaten any of the food offered at the festival – that was out of the question – but even the non-food activities there would have been anxiety-producing, enough so that I probably wouldn’t have done it solo... too many things to watch out for/anticipate. Fast forward, however, to our new world where cross-contamination is not a risk anymore. I took them to all of those places, let them eat what they wanted, even ordered a sandwich from a food vendor at the festival (Finally! Freedom from the cooler bag!) and let the boys run free to touch whatever they wanted in the booths without chasing them down with wipes. It was amazing. I was truly overwhelmed at the ease of it all and the enjoyment of the day and the moments in ways I hadn’t felt before.

We went to Costco and spent several hours walking each aisle, talking about the foods and brands that they’ve never had, but can now. They wanted to learn about different types of nuts and brands, asked questions about what things taste like, and then savored the samples that were previously coveted but forbidden. We went to bakeries and food stores and did the same thing – looking at and talking a lot about food (and then eating new things!). This is a process to adapt to, not just physically, but mentally. When they picked out their MUCH desired Zbars (I guess because they see their friends with them? I’m not sure why it was such a hot item, but it was high on the Wishing Wall…), they both held them and looked at them for a moment. 
Aviv then asked if he could eat it, ripped open the package, and began devouring it. Ari opened his and stared at it for a minute before asking me, quietly, if I was sure it was safe. I told him it was, but that we could read the ingredients together just to make sure. He listened to the ingredients intently, heard me confirm that even though it was made on equipment with nuts, because he has been so brave and followed all of the rules of the study so well, his body is now strong enough to handle it, and it’s now safe for him. I keep reinforcing that it’s their bravery and diligence that is enabling their bodies to grow strong. I know that the nightly doses aren’t fun for them. Despite the fact that they are taking their nightly nuts in chocolate pudding, apple sauce and/or a big chock-full-o-nuts cupcake, the sheer volume makes it not exactly fun or tasty, and I want for them to have a clear connection in their minds of the benefit that they get from this effort, as they have a lifetime ahead of them of daily doses in order to maintain their bodies’ immunity.

I also had a few moments of my own when I was struck by how our life had changed over the past 2 weeks. One was the arrival of our first nuts.com order… there was something just so unbelievable about it that we all looked at the box and laughed for a while before opening it. Then during a meeting at work, I had a bite of a peanut butter cookie and then instinctively assumed my usual position after such a contaminating event of making sure that my hands don’t touch my pen or phone until I have a chance to wash them off… until I realized that it was ok… this level of cross-contamination was fine… it won’t hurt my kids. My head spun a bit as I had to almost force myself to pick up my pen without waiting to wash my hands. Just as the kids are experiencing new things and re-learning ways of living, we need to re-learn habits as well.

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Tomorrow we head back to Stanford for the next updose – this one to 5800mg! We’re definitely past the point of being able to hide the nuts into a cupcake, so it will be interesting to see the actual number of nuts tomorrow, and more interesting to see how we’re going to get them to eat that many at one sitting each night. As I prepare our bag (with games, medicines and my huge medical file of notes) for tomorrow, I am acutely aware of the huge cloud that has been removed from our sky. As tiring as it was to keep up with 2 active boys as a solo parent for the past week, going out in public with them wasn’t stressful. That, on its own, is a huge change. We thought that the big life change would happen for us when the study ends and the boys graduate from it, but in some ways, crossing the cross-contamination barrier is a bigger milestone. The boys are sharing their good news with everyone who will listen; they are so excited about these new experiences and it feels like such a privilege to watch them revel in it. For us, participating in this study is about what happened this past weekend… it’s about erasing the invisible layer of risk and anxiety that permeates everything we do, to allow us to just live and enjoy our lives. To enjoying every minute!

D-lacious!

Our minds have stretched themselves to the point of hurting over the past 48 hours since the boys were cleared to eat foods that might be cross-contaminated, as realizations of things that are now possible come into focus, one at a time. It’s been interesting to hear from friends and family these past few days regarding what their first “Now you can…!” is, giving us a window into the parts of our lives that they believe was most oppressive or the things that most impacted their lives. For us, we didn’t even think about what we were missing most of the time because we were so used to it, so this has been eye opening. My mom was excited that she can now serve chocolate after meals at her home, and that she can use her favorite Trader Joe’s items when she has us for dinner. (Many of Trader Joe’s items are made in facilities that also process nuts, so were off limits. No more.) Orr was excited that he can finally buy fresh breads for the house, so he went and bought two different, interesting loaves today. We’ve been making our way through them quickly! (For those of you who are thinking, wait, isn’t it still Passover? Yes, it is, but we decided to bring our observance of it to a close early. Not to be over dramatic, but we feel that we are experiencing a “coming out” to freedom of sorts, so this is our Passover observance this year. Next year we will go back to matzah.)

One friend, after hearing our news, pointed out that we can now leave our house on the weekend, for a day of doing whatever one does on the weekend, without having to pack a huge cooler bag full of food. This was one of those things that we never even though about, but – I’ve heard – other people just leave their home when they want to go out, and get food wherever they are. Intriguing. As tempting as it sounds, I’m actually getting a little anxious just writing about the idea of leaving the house so naked, and might have to ease into that one slowly.  Other friends invited us over for lunches or dinners, feeling comfortable now to do so. We are acutely aware of the stress that can come with thinking one wrongly placed spatula could send our kids into anaphylaxis, and we’re just grateful now that the fear is lifting for all of us, and that doors are (literally and figuratively) opening.

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Today the kids were off from school, and Orr decided to take them to a bakery for the first time to let them choose whatever they wanted. (Wishing wall item #2: check!). Sticking close to their food-based personalities, Aviv chose an old, recognizable favorite - blueberry muffin - and Ari chose a chocolate croissant because it sounded interesting. Ari is one of those rare kids that really, really likes foods, and has always been adventurous in that area, eager to try new foods and sample new tastes. (Lucky for him, he has a dad who likes to cook delicious foods…) So for Ari, discovering a new texture, flavor, and food experience is exciting. As Ari savored his croissant, Orr asked him if it was good. Ari replied, “it’s not just good, it’s amazing! I have never had anything like it.” It then occurred to Orr that Ari was right – he never has had anything like it. Of the many delicious treats that Orr bakes, croissants are not one of them, and since the kids have primarily only had baked goods that Orr makes, Ari has never experienced one. Ari sat and ate his croissant quietly, just enjoying the moment and those first bites of flakey, buttery goodness. It’s not often that you get to watch someone truly savor a new experience so completely, and certainly not one that you tend to take for granted, like the existence of a fresh pastry. These are the small things that seem so simple, but run deep. When they were done, Orr bought fresh bread to take home, which Aviv wanted to try. (New forms of carbs available to them? He’s in.) After eating a slice of fresh sourdough polenta bread, spread thick with butter, Aviv commented on how good the bread tasted. (“D-lacious!” is the word he has coined, which is a step up from 'delicious'.) They discussed how bread tastes best in the first few hours after baking, and that all the breads Aviv has eaten previously (with the exception of the weekly chocolate chip Challah that Orr makes) were large-factory breads and not fresh out-of-the-oven breads, because those were the breads that we could be sure were safe. Hopefully those factory days are over and we are off to a fresh (bread) start.

First Wishing Wall item: Done!

“Cookies & cream ice cream, on a cone, with sprinkles on top!” were the sweet words I heard from Ari tonight, as he proudly stood at the counter of our local ice cream store and ordered. Aviv ordered his celebratory ice cream on a cone with snow caps and gummy bears - firsts for both kids who have not been able to order toppings or cones, and only limited ice cream flavors at limited stores. How did this happen?? Hard for us to believe, too...

Today's appointment went very well, which is amazing since the boys had their monthly Xolair shot (painful, even with Buzzy to help), blood tests (done periodically to check to see the changes in the bodies IgE levels and other indicators) and then their updose to 4000mg. It was sweet to watch Aviv (who went first in each of the scary shots/tests, as always) help the nurse with Ari's blood draw, replacing the tubes, carefully observing the process and asking technical questions. Such a contrast to Ari, who doesn't want to see the needle or talk about the procedure. Finally, with kids settled back in to their bed to watch Empire Strikes Back for the millionth time ("Laugh it up, Fuzzball" never gets old...), we talked through the new dosing with the nutritionist. To give this context: 4000mg translates to 4 cashews, 4 hazelnuts, 3.5 peanuts, 2.75 pecans and 1.75 walnuts for Aviv, and 6.5 hazelnuts, 3.75 pecans and 2.25 walnuts for Ari. Per day. For kids who just a few short months ago couldn't be near the stuff. In addition to that being amazing, it's also a little terrifying for us. All of those nuts now live in our house, and we bake them into little (now big) muffins for them to eat as their nightly dose for the next two weeks.

But more surreal than that was the bombshell news from Dr. Nadeau today: we've crossed the cross-contamination barrier! The boys' daily dose is now so high, that cross contamination is no longer a danger. This means that they can eat foods that have been made in a facility (or on equipment) with nuts. They still can't eat actual nuts outside of their nightly dose, but everything else is fair game. Bakeries. Ice cream stores. Fresh breads. Restaurants. People's homes. Any brand. I had to ask Dr. Nadeau several times to explain what that meant, and - just like in the very beginning, where I had trouble believing that we were really admitted to the study, and had to ask her to repeat things in a dumbed down way so that it could soak in for me  - had trouble believing what she was saying. Most of the things on our Wishing Wall are already available? Does not compute. The one limitation right now is that she wants to limit their sampling of this broader world to only when Orr or I are around, as we are trained at this point to recognize even small reactions and handle them (ideally) without need for EPI pens or the ER. So school and any other activities when we aren't around need to remain as is, from a nut-free/protocol standpoint; only if we're with them, can they begin to experience more without worry of cross-contamination. As exciting as this is (and don't get me wrong... this is HUGE), it is going so fast that it will take a while for all of us to truly absorb it mentally and be able to act on all aspects. I thought about going to the grocery store, and realized I'm not even sure which brands I'd want to look at anymore, and am not sure how comfortable I'll really feel bringing them home. Beyond the expanded food options is the critical disappearance of the previously omnipresent risk of invisible dangers. I want to let out a huge sigh of relief, but the sigh is getting caught in a bit of disbelief. I need to reiterate to myself that their bodies are ready for this, even if their (and our) minds aren't.

So that's how we ended up at the ice cream shop tonight. We wanted to celebrate this huge milestone of jumping the cross-contamination barrier, and asked the boys to pick which of their Wishing Wall items they wanted to do first. As if they had been waiting for this question their whole lives (which, really, they had), they responded excitedly and in stereo: Ice cream with toppings! When you're a 5 or 6 year old, the bright colors and shapes of toppings is too much to resist, but when you're forced to stay away, the desire is even greater. Without a second thought, we headed to the local ice cream store where we immediately realized that we needed to start with a primer on toppings and ice cream stores, for that matter. When I asked what flavor they wanted, Ari told me that the store didn't have many. His experience was just that - the only choice they'd been given previously was vanilla or chocolate (because those came from dedicated chocolate and vanilla frozen yogurt machines). I explained that there were many flavors at the store, and that they could even sample different flavors. That blew their little minds and overwhelmed them, so I just handed Ari a Cookies & Cream sample, and he was thrilled.

As for toppings, we had a lesson there, as well, walking through the different types. Aviv couldn't limit himself to just one, and I wasn't about to make him. They had earned this, damn it! After they ate their ice creams, they spent more time peeking through the glass counter at all of the flavors, letting their minds register the fact that this was a new, open world for them.

This has all gone so smoothly, and so quickly, and while we're not done yet, progress is happening and things are definitely changing… I just need to take a breath and pinch myself that it’s real. Moments like tonight, when Orr & I crumbled 4000mg of nuts into muffin cups to make their chock-full-o-nuts cupcakes help to make it feel real, but it’s still going to take time. Some fresh bread (Acme! Arizmendi!) and toppings should help pass the days…  : )

Welcome to nuts.com!

Never thought I’d see those words… we used to order regularly from peanutfreeplanet.com; last night marked our first order from nuts.com, as the volume and variety we need (to give some raw/whole nuts in baked goods, some covered in chocolate for easy eating, etc.) is getting bigger. That’s definitely going to confuse some email profiler/marketer out there…

Things have been going extremely well these past 2 weeks. The kids have been taking their nightly dose well with minimal reactions (occasional stomach pain or flushed cheeks, but that’s it), and the excitement over the peanut M&M’s has not worn off; it is the coveted finale to a multi-tiered dose: some nut powder in apple sauce, some pieces baked in a brownie bite [with color coded candy on top to differentiate Ari's from Aviv's], then finally the peanut M&M’s, in all their glory. 

A&A have continued their quest to learn more about nuts, checking out books from the library that describe the different types and joining us at the market to see the varieties. They have also added a few new items to the wishing wall: eating a Z Bar (they enviously watch other kids eating them all the time), and trying peanut and other nut butters. They might actually get to do those things sooner than expected… at some point (likely coming up quickly, either at Tuesday’s updose, or at the next one) they’ll be over the hurdle of cross-contamination risk. What I believe this means – and trust me, it’s hard for me to get my head around, so I have a loooong list of questions for their doctor on Tuesday – is that they’ll be able to start eating items made in facilities & on equipment that process nuts, as the related risk that used to exist (that is, that they ingest small amounts of their allergens, which could cause reactions due to their level of sensitivity), goes away. Not as quantifiable/recognizable for the kids, but very real on the stress-o-meter for us, is the fact that table tops, play equipment, etc. would also cease to be an anaphylactic danger at that time. Again, I might have this wrong, and I have no idea how we operationalize this shift, but the main questions running through my head are whether our existing procedures around hand wiping, school protocols, carrying food everywhere, only buying certain brands, etc. all change, and if so, phased or immediately? I believe the latter, but I need to hear it from Dr. Nadeau. That will be a huge change for us both practically and mentally. Until then, we’re holding status quo.

Passover and Easter each brought ‘perspective moments’ this weekend. We were at a friend’s house for an egg hunt today, and all the kids were playing together upstairs. While I was downstairs replacing the candy in the plastic eggs A&A found with safe candy I brought from home, Ari came tearing down the stairs and made a beeline for me. He was frazzled and immediately reported that one of the boys upstairs was eating a peanut butter cup. I went to assess the situation, and Ari disappeared; he didn’t want to be anywhere near the offending candy or child until the situation changed.  Aviv was upstairs watching the boy eat the candy, sitting at a bit of a distance away, not touching the boy but because he didn’t want to stop playing, he continued to handle the same toy that the PB-eating boy was handling. The three of us had a short conversation about safety and both boys went to wash their hands. Only after Ari heard the boys go back upstairs did he reemerge, ask for confirmation that everyone washed hands, and then felt he could resume playing with them. Those are the kinds of responses that our family has hard wired into us at this point, and that won’t change overnight.

Friday night was also the first night of Passover, and the kids assisted me in our yearly charoset making. Charoset is a staple Passover food that traditionally contains nuts; needless to say, the kids haven’t known one that way. As we chopped the apples and dried fruit this year for it, we talked about how this would be their last Passover with nut-free charoset. My replacement sunflower seeds (that aren’t fooling anyone) can finally go! : )  The kids are old enough this year to join us in observing Passover, meaning that they aren’t eating any leavened bread this week. While out yesterday, we searched for a restaurant that could accommodate our need for nut-free AND Passover-friendly food... not easy. It reminded us to be thankful that, as difficult as their nut allergies have been to manage, we’ve only had to manage nuts, not the myriad of other allergens (like wheat or gluten) that so many others struggle with. Over the years, I often thought – if both kids had to have allergies – of how lucky we were that they had the same one, and that point was highlighted this weekend. I have tremendous respect and empathy for families who manage (both logistically and emotionally) multiple allergens, and as we gear up for our next updose to 4000mg (!) on Tuesday, I am hopeful that Dr. Nadeau’s research can ease the burden on their lives as well.