Hola Mexico, and goodbye to 2012

While life is not completely normal for us, it is infinitely better than when we were here in Cabo one year ago. Last year at this time, we brought a suitcase full of safe food, wipes and medicines, and a laminated card that explained (in Spanish) about the boys' allergies and the detailed precautions needed to be taken by food preparers, house cleaners, etc. I watched over every pool toy that was shared with them and worried all day, every day. Vacations weren't really vacations, a year ago; they were just chaos – exacerbated by new, unknown fears - in a new location. This time, it's different. We boarded the plane together (brings tears to my eyes to be able to board as a family without a full decontamination!), the kids play freely with other kids at the pool, we can order any food at any restaurant we want, and while we brought a lot of food with us again this time - specially-made nut brownies & cookies, hazelnut milk and pecan crunch (a pecan trail mix that has, surprisingly, met with rave reviews from Ari) - it's only for their dose.

The stresses on vacation this year are more of the standard parental variety: kids fighting and trying to drown each other in the pool, mosquito bites, sunburn. While none of the anxiety comes from fear of food or surfaces, there is still some food-related stress: the stress of getting the dose in, and once in, the effect on mind and body. Ari's stomach discomfort continues as he struggles with eating his very filling dose and wanting to eat normal foods, and the challenge is magnified here in a destination where there are so many new and interesting local foods to try. The result is a constantly bloated tummy (see picture of seemingly 8 month pregnant child, right), digestive challenges and frustration. He was SO excited to eat tortilla soup, empanadas, fish tacos and stuffed sea bass the other evening after finishing his dose (what a blessing, normally, to have a child who truly loves food), but boy did he pay for it over the next 24 hours. So yes, there are still aspects that we are hoping smooth themselves out to enable a true feeling of normalcy, but we count our blessings for how far we’ve come.

As 2012 comes to a close, we take a deep breath and ready ourselves for another year forward. Another year of miracles and firsts; another year of helping to further research toward treating food allergies; another year of feeling so grateful and thankful for all of the amazing people in our lives who have enabled us to live a very different life today than we did a year ago. Our holiday card, summarizing and wrapping up this year, is below. Wishing you all the best for a safe, healthy, happy new year.
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Our lives have changed dramatically since our last holiday newsletter. You may recall us sharing last year that the boys were being considered for a clinical trial to treat their food allergies. Since January, the boys have been participating in the trial and the results have been nothing short of miraculous. Both kids have been desensitized to their life threatening allergies to nuts, and Aviv has even gone negative to five of his nuts… that means his DNA actually changed, removing the allergy from his body. The boys not only can eat nuts (and all foods made in a facility with nuts) now, they must! Every day they must eat a maintenance dose of their allergens to keep their bodies remembering the immunity they have built up. This part is not fun for them, as they don’t enjoy eating the food that for so long was dangerous to them, but it’s what keeps them desensitized, and we’ve been tapping every creative method we can think of to make it easier.

We would be lying if we said this hasn’t been tough – emotionally, physically, logistically – as we focused almost exclusively on supporting their successful participation in the trial, and there were moments we didn’t think we’d be able to continue with it. We are thrilled to be able to say that thanks to the best research team in the world at Stanford, amazing friends and family who supported us along the way, incredibly supportive schools, two boys that put in a lot of hard work and defied the odds, a lot of creativity and some very large prayers being answered, we have been able to continue in the trial and our family is now free from the fear that used to weigh on us at every turn and with every interaction. If you’d like to support this amazing research with a donation, we’d love for you to join us in giving here: http://foodallergies.stanford.edu/

Thanks to the life changing results of the trial, this was an amazing year of ‘firsts’ for us. We created a Wishing Wall of all the things we wanted to do (but couldn’t do previously due to their allergies), and savored each item that we were able to check off as the year progressed. The kids were able to experience their first trip to Disneyland, first sleepovers, fresh bread and pastries, ice cream with toppings, Thai food, boarding an airplane together as a family, trick-or-treating, the freedom to eat or play wherever they want, and the return of Orr’s delicious chocolate pecan pie to our Thanksgiving table. Trust me when I say that you don’t know pure, innocent pleasure until you’ve seen kids stand and stare into a bakery counter for the first time, awestruck at the smells and sights, and then savor the sweet tastes we take for granted for the very first time.

When Ari and Aviv aren’t changing the world one nut at a time, they’re two regular boys growing, thriving and loving school. Aviv has embraced Kindergarten and riding the school bus like a pro, and continues to keep all of us on our toes with his endless energy and ability to find the loophole in any set of rules. He enjoys tennis, tee ball, and foos ball, and loves to climb, explore, build and destroy. Ari won his first chess trophy, and loves Hebrew, math, reading, and everything else that First Grade has to offer. He continues to lose teeth and grow out of his clothes at a rate we can’t keep up with, and both boys spend their time fascinated by Star Wars, building Legos, playing board games and hiking.

As 2012 wraps up, to say we feel blessed – despite the exhaustion! – is an understatement. We couldn’t have imagined this time last year that our kids would be able to go on play dates, on sleepovers, to school and to the playground without fear of anaphylaxis, but now they can. We feel truly blessed and grateful for all that this year brought, and wish for the gifts of good health, miracles and happy firsts for you and your family in 2013, as well.

Nes, Gadol, Haya, Poh

As Chanukah drew to a close the other night, I couldn’t help but reflect on the past, both recent and long ago. Just one short year ago at this time, I ordered Ari & Aviv specially-made chocolate coins (a traditional Chanukah treat) from a nut-free factory, so that we could bring them with us to all the Chanukah parties we went to. I remember standing at those parties worrying as they touched the wrapped coins (that we didn’t provide) while playing dreidel games, fearful that the coins had been touched previously by another kid who had eaten something with nuts, and left deadly oils on the wrappers. Beyond the chocolate coins we brought with, there was almost nothing they could eat at the Chanukah parties we went to. Not this year. This year, they ate everything, and I do mean everything… latkes, cookies, jelly doughnuts, chocolates, candies, appetizers… whatever was served, they ate. I felt I needed to apologize to one friend when Ari did his best to make up for the past few years of not being able to eat anything at her annual party by wiping out several candy bowls and an appetizer platter. Both kids gorged themselves on menorah-shaped cookies, and played freely in rooms filled with kids and treats without me having to watch over them with fear.

Which brings me to Chanukah from long ago…  Many of you may be familiar with the letters on dreidels (the Hebrew letters Nun, Gimil, Hay and Shin) which stand for the phrase ‘a great miracle happened there,’ referring to the miracle of the oil that burned for 8 nights thousands of years ago, when it should only have lasted for one. The interesting thing is that those are the letters on American dreidels. In Israel, the final letter is Pey, not Shin, which stands for ‘here’, not ‘there’. This year at Chanukah, I felt that we should be playing with an Israeli dreidel, as a great miracle happened here. This time last year, we had just finished the oral food challenges, and were preparing to begin the Xolair in January. Last December, we couldn’t have imagined the true miracles that would occur in this one year, with both boys desensitizing to all of their nuts, and Aviv going negative to five of his six nuts. Nes, Gadol, Haya, Poh (“a great miracle happened here”), indeed.

And if it doesn’t seem too greedy, I’m going to wish for another miracle. Ari is really struggling with his daily dose… it fills his stomach up so much that it hurts, and he yearns to eat normally. He was a kid that had such a refined palate and love of food, and he is sad each day that his ‘regular food’ opportunities are limited so that he doesn’t fill up too much and not be able to finish his dose.  We can’t help but remember his words several months ago, when he lamented that, “We did this study so that we could eat anything we wanted, but the truth is, we can’t because we have to eat dose.”  He sees Aviv’s amazing progress, and he’s frustrated every day. A&A’s next round of tests is mid-January, and we’re hoping that Ari goes negative to at least one nut. I’m going to hope for our dreidel to land on Pey that day.

Giving thanks

I’m delinquent in posting my Thanksgiving-themed entry, but not in actually being thankful. So, so much to be grateful for this year…

Amazing friends. You may remember me mentioning the medicine crisis we were in two months ago when we discovered that the only antihistamine that helps Aviv keep his environmental allergies in check (and, seemingly and anecdotally, appears to be supporting his great success in desensitizing) was discontinued. We panicked for about a minute, then went full throttle on the problem. We went to every CVS (the only seller of the generic version of children’s chewable Zyrtec we wanted) around and bought all the remaining supply, but most stores were already out. We tried other manufacturers; no one was making it. We spoke with CVS’ corporate office; they tracked down the issue and confirmed that the product was discontinued because they were having trouble getting enough supply from the manufacturer. They are seeking a new manufacturer, and hope to be able to put the product back on the market soon, but couldn’t estimate a timeframe. They are prohibited from selling product returned from their stores, so the only way for us to get our hands on any remaining stock was to find CVS stores that had not yet received the corporate order to pull it from the shelves. Here’s where our amazing friends come in… I sent out an SOS email to friends in various parts of the country and asked them to scour the CVS’s near them for any remaining boxes. Like a cartoon where boxes start raining from the sky and pile up so high that you can’t see the cute kid in the middle, boxes came. One after another, and another, and another. From Nevada and Florida and Los Angeles and South Carolina and beyond… they arrived. We got emails from those who took on the quest with a vengeance (“I found 6 boxes in Truckee, and am now off to 3 more CVS’s in Reno!”), resulting in us now having enough boxes to last us another year. Every box that arrived brought tears to my eyes… thank you, my dear friends, who made time in your lives to hunt down boxes of little pink pills to help Aviv. (Ari, too, is now taking it, in the hopes that there might be a linkage between regular antihistamine use and successful desensitization.)

A new reality. Small reminders of the life we had just a year ago pop up often and in funny places. Today at the hair salon, a stylist who hadn't cut my hair in over a year was preparing to put the final touches on my head when she said, "I remember that your kids have severe nut allergies, so we need to check the labels on the products to see which ones are safe to use." Yes, even seemingly innocuous things like hair products used to be a potential source of danger, as many toiletries are made with nut oils. And at our Thanksgiving table this year, not only were we free of food-related fears, but we were able to welcome back one of Orr’s favorite desserts. It’s been many years since he was able to make his famous chocolate pecan pie, and Ari certainly enjoyed having his pecan dose in pie form that night! .

Our amazing medical team. From the cutting edge research, to returning calls and emails at all hours of the day and night, we are blessed to have the best medical team one could hope for. Both our pediatrician (Dr. Nelson Branco, who has been with us through so many questions, issues and hospital visits since Ari’s premature arrival seven and a half years ago) and our SAFAR team (Dr. Kari Nadeau and team, who have been amazing and supportive through every tear, fear and step along this journey) help us to solve problems when we’re at a loss, stay motivated when we’re spent, and be hopeful when things seem bleak. Things don’t seem bleak anymore, and we have our amazing medical team to thank for that.

New challenges. This might seem like a funny thing to be thankful for, but I am even grateful for the new challenges that we face each week as the kids’ bodies morph and adjust to their new world. It keeps us remembering how new and fragile these changes are, and how critical it is that we support more of this research through active participation, financial support, education, awareness building and advocacy.  Our latest challenge (beyond the usual cries of ‘I don’t want my dose!’), has been that Ari’s tummy has been bothering him and “too full” for about a month now, likely related to ingesting his daily dose. 60 nuts/day is a lot of fiber, fat and protein, after all, for a little guy.  Yet another new puzzle to solve, so we’re adding some digestive aids and Pepcid to his routine, hoping that will help him.  If not, we’ll try something else until we figure it out. Yes, new challenges both keep us on our toes and remind us of how far we’ve come, and make no mistake – it’s a long way, baby.

TWO MORE DOWN!!

I didn’t post yesterday that we were keeping fingers crossed for another set of positive test results at Aviv’s 2^nd six week appointment today, as it just felt too presumptuous and out of reach, but I’m THRILLED to report that Aviv did it again! After skin tests, a blood test and a food challenge to pistachio that didn’t even make him blink today, the results are in: He went negative to two more nuts!! He went negative to cashew and pistachio, the latter of which he’s not even being treated for; pistachio just enjoyed the ‘buddy’ effect of cashew being treated, as the two are genetically very similar. This brings his grand total of nuts that he’s gone negative to (that is, his DNA actually changed and does not show the allergy any more) to five, leaving one (peanut) left, but even that one is showing only a very mild reaction during the skin test, so we have reason to believe it’s heading the right direction. (Just to highlight how far we’ve come, when Aviv asked which nut was left, and I told him peanut, he said, “Yay! That means I can keep having Reese’s Pieces!” Yay?!?! Didn’t think I’d ever hear that word in relation to dosing…

“But I didn’t think DNA could change…,” said a friend of mine who listened to me gush this afternoon. I hear ya, sister; I’m having trouble believing it’s real too, but apparently it is. As we took in the new news today at Stanford, there was acknowledgement of the spectrum Aviv has gone through, from being one of the kids that faced the most and biggest speed bumps along this road, to being the one with the most mind boggling results. Aviv continues to surprise us, demonstrating that he will always defy the odds and that his will is a force to be reckoned with (in case we weren’t 100% clear about this). 

Ari, trudging along through his 60 nuts/day dose, is less than thrilled. He doesn’t begrudge his brother’s good fortune; he’s just very sad that he’s still holding steady.  It’s all relative, right? His results are still fantastic (to be desensitized to the allergens that used to be so dangerous to you), but it doesn’t feel that way for him in light of the excitement for Aviv.  “I don't want to eat dose; I want to eat real food... Aviv is so lucky... he went negative to five nuts, and I haven't gone negative to any. I'm still allergic to my three, and I have so much dose to eat.”  We’re continuing to try to innovate new food approaches for him, but it’s still hard. We are quietly crossing fingers that when Ari goes in for his next testing (in January), that he’ll go negative as well.

Now for the firsts… Ari got to participate in a cookie decorating activity at a local fair (off limits, previously), and had his very first sleepover – another item off of the wishing wall! Aviv, out of nowhere, asked for a Reese’s Peanut Butter Cup. Turns out - despite his resistance initially - he’s a fan! That’s fantastic, as one of them equals ½ his daily dose of peanut. Easy peasy. 

Ari also decided to be be brave and try two new tastes, which it turns out he likes. The boys helped me to make trail mix for Ari (which is great because there’s no extra bulk/volume such as occurs with baked goods) and finally, after begging him to try nut butter, Ari grudgingly tasted a walnut butter and jam sandwich. To my relief and surprise, he announced, "Hey! It's pretty good!" Well, hallelujah! The easier the delivery mechanisms (and trail mix and nut butter are infinitely easier to find and manage than specially concocted crackers, brownies and calzones), the easier everyday life will be for them on a go-forward basis. Waffles (cashew, pecan, walnut, etc.) are also the go-to easy dose food; what’s not to like about a yummy, portable treat that you can slather with your favorite shmear?

With Aviv’s appointment over today, we are now on our own (no visits to SAFAR) until mid-January, when both boys will go in for testing. As I’ve been thinking of the progression of this trial and the corresponding changes in our lives, and as I dream of getting to travel more with the kids, I have often wondered how we would travel with the dose. Specifically, we wouldn’t have the same worries as before (that every hotel restaurant would cross contaminate their food, etc.), but may have a new challenge of figuring out the logistics of bringing and administering a fair amount of nut products for dose. With Aviv going negative to his nuts (and Ari hopefully to follow), however, I feel like I can start to see a normal ‘steady state’ in our future. I believe it really will be manageable: that eating normal food, laughing and being carefree will increase; that dose, tears and fights will decrease; and that we’ll all get to sit around, look at the pictures of the piles of nuts they used to eat framed next to their Medic-ID bracelet, and marvel. That’s my crystal ball and I’m sticking to it.

May the force be with you

I am not a fan of the rain, and being out in it is something I actively avoid. Tonight, however, I gladly put on my Princess Leia costume (we do family theme costumes each year), tightened up the belts and boots on my fellow Star Wars characters, and took the kids trick or treating, in the rain, so that they didn’t miss their first uninhibited Halloween. No more fears of touching or accidentally eating unsafe candy; the only fear tonight for us was stepping on Aviv’s long, soaking wet Darth Vader cape. The kids felt free to accept any candy they were given, and when we came home, they engaged – for the first time - in the age-old tradition of pouring out all of their candy on the counter and touching, sorting, tasting, discussing and reveling in the sheer, innocent, childhood-ness of it all together. Ignoring the sugary artificialness of it all, it was a beautiful sight to see, and I found myself stepping back, watching them, and smiling. Hard to believe that only one short year ago, Halloween was still – like birthday parties and unannounced treats at school – an anxiety inducing event. No more, young Jedi; no more.

Faux ricotta, ice cream toppings and antihistamine... oh my!

As another week winds down, leaving in its wake hours and hours of baking, some firsts, some fights over dose, hours spent on ‘lunch box math’, some new discoveries in this ever-expanding field of research, some new hurdles to overcome, some feelings of accomplishment and wonder, some tough moments, and the ever present exhaustion, I continue to be amazed at how densely packed each week is on this journey.

First, the firsts! We took the boys to Ghirardelli Square. Ghirardelli was a brand they recognized early in their lives as being unsafe for them (due to cross contamination risk), so it seemed especially satisfying to go into the Ghirardelli factory (where chocolate/nut-palooza is an understatement), order a huge sundae, and go to town on it. And it was. 

As if that wasn’t enough chocolate and frozen dessert for one month, they also went to a nearby frozen yogurt store that is known for its extensive pile-it-on-yourself topping bar.  And they did. It was all I could do to hold them back from having an entire cup of toppings.

The sweet moments: Hearing Aviv proudly tell a friend who he hasn’t seen in a while that he isn’t allergic to nuts anymore. I didn’t have the heart to correct him on the technicality. What would that even sound like? “Well, you’re not allergic to 3 of the nuts anymore, but the other two you’re technically still considered allergic to until the study is over, although you’ve been desensitized to them. Don’t even get me started about pistachio which isn’t covered by the study…” No. I was letting him have his moment of pride. That kid deserves it.  We also went to a few people’s homes for meals, and marveled at being able to break bread together over nut-filled appetizers and meals.

The tough moments: there are many. We’re still not without fights over dose; they're just smaller and less frequent. Ari has let us know that he feels he’s getting the short end of the stick now (as he hasn’t gone negative to any nuts yet). When Aviv finishes his dose for the day, he asks for, in his words: "food, you know, FOOD food. Real food." All the prettying up in the world still doesn't help them feel like they're eating normal food, but at least they're sticking to the daily dose. We’ve also been through several nannies in this process (just started another new one this week) for a variety of reasons, but the specificity and criticality of getting the dose in each day, and the boys’ accompanying moods, certainly factor in.

Baking, freezing and lunch box math: The kids are still working with Chef Tom’s creations, although they want more variety. He started making ricottas out of the nuts which Orr has been using to make additional creations… lasagna, calzone, cheese bread, etc. To counter the boredom that comes from lasagna, hazelnut milk and pecan waffles every day, Orr (in his few days home between business trips) has spent hours upon hours baking additional items so that we can mix and match. I, in turn, then spend yet more hours labeling and freezing so that we can pull out the different pieces periodically. 

The real pedal hits the metal when I stand in front of their lunch boxes each evening, cursing myself for thinking that by going to law school, I could avoid math problems. 2/3 pecan waffle, plus 3 small cheese breads, plus half of a hazelnut cookie, plus ¼ lasagna equals… you get the idea. (Pic of one day's dose for Ari - and the note to keep it straight! - is to the right.)

New discoveries/hurdles: There’s a possibility that there may be a linkage between those who are seeing success in the trials and those who regularly take antihistamines. Aviv – who has had amazing trial results to date (going negative to 3 nuts!) – is on a pretty high dose of antihistamine (20mg of cetirizine, the active ingredient in Zyrtec) per day to keep his environmental allergies in check. Connection? Who knows, but we’ve decided to give some to Ari daily to see if it helps him progress. The new hurdle du jour? The product that we give Aviv (CVS’ generic version of Children’s chewable Zyrtec) has apparently been discontinued. (Really?? I needed that right now??) Zyrtec stopped making their children’s products in 2010, but CVS has made a great generic since then that works really well for Aviv. (You may remember from a few weeks ago, the fiasco that occurred when we tried to switch Aviv to Claritin, which apparently doesn’t hold a candle in efficacy for his particular body.) 

For some reason, CVS has stopped production on their children’s chewable tablets, and no one else makes an equivalent chewable. (There are children’s liquids, and adult tablets, but neither have been great fits for us.) We have several boxes of the pills, but we go through 25mg/day here (we just tallied it up – it’s almost $1000/year on antihistamine alone!), so our stock will be depleted quickly. Upon cleaning out the entire existing stock at a few CVS’s in Marin, San Francisco and Boston (Orr went from one CVS to the next on his recent business trip there), and coming up empty handed at many more, I sent an SOS email to friends in other locations who are – as I type – hitting up all the CVS’s in their areas to find and buy the last remaining stock. As back up, I’ve already planted the seed with A&A that they’re ready to start taking pills the grown up way (no chewing; just down the hatch with water). If they can handle that, we’ll just switch over to adult tablets and call it a day. Never a dull moment.

Finally, to end on a high note: We have another first coming up! We realized that this Halloween will be the kids’ first real trick or treating, and our first without gut wrenching anxiety. In the past, we’ve alternated between trick or treating inside a friends’ home (each door had a different adult with safe candy behind it; that worked when they were very young but quickly was outgrown), to going to parties with safe/pre-approved candy, to finally having to give in to trick or treating in public with agreed upon rules: no touching/opening any candy, no hands in your mouth, frequent hand wiping, and then a complete trade-in at home where we exchanged their loot for safe candy. The anxiety was palpable for us from the last week of October through the first couple of weeks in November, when mini-Snickers, M&M’s and Reece’s Cups seemed to pop up everywhere. This will be the first year where our concerns can be limited to the standard garden variety of sources. I’ll raise a pumpkin to that!

Trifecta!

Amazing news all around: Ari’s skin test results all improved, and Aviv went negative to a third nut! The skin reaction for Ari for his three nuts went down to 3mm each (from 4.5-6.5mm, respectively), and Aviv continued to show negative for walnut and hazelnut (as he did six weeks ago) and now pecan, too! I kept watching his arm during the test, incredulous at what I didn’t see. The fact that their DNA can change at all is hard to believe, and that it has now happened with 3 different nuts for Aviv in such a short time is truly miraculous. While the blood test results (to confirm) aren’t back yet, Dr. Nadeau assured us that negative skin test results are 99.9% predictive (positive skin tests less so), so we can feel free to celebrate. Aviv is THRILLED at the news and seems very proud of himself, and it again energizes all of us to keep moving forward with the daily doses.

Based on the mild skin test reaction to pistachio last time, we considered giving Aviv an oral challenge to pistachio. Pistachio is the nut that Aviv was allergic to, but couldn’t be included in the trial as it hadn’t been approved by the FDA. There was speculation/hope that a ‘bystander effect’ would occur, as pistachio’s genetic makeup is very similar to cashew (which he was desensitized to), and we wanted to validate that desensitization was occurring vicariously, as the previous skin test seemed to indicate.  As his skin test results to pistachio this time stayed flat (no decrease or increase from 6 weeks ago), we decided to hold off until the next appointment.

In addition to the great news of Ari’s tests trending in the right direction and Aviv showing another nut just who runs the show (a lesson he teaches us every single day), it was just such a smooth appointment. The boys were so easy going, showing what pros they are now, directing the location of the skin and blood tests, holding the tubes, and seemingly (almost) enjoying their appointment time. Tina even commented that it didn’t feel like she was with the same scared, crying boys who were there 10 months earlier.

Meanwhile, at home, Chef Tom’s creations are continuing to be well received and eaten without argument, both as delivered and as modified by Orr. Aviv called me to share his exciting news that he liked the peanut pesto that Tom made (green food – that was a big stretch for Aviv), and Orr had to actually stop Aviv from eating too much of the cheese bread he made from cashew ricotta. We’ve learned that there are different varietals of certain nuts (such as hazelnuts) that are sweeter; that soaking nuts softens them to enable a creamier taste (but don’t soak so long that they ferment, altering their protein makeup); and that nut flours (available online from places like Byrd Mill and nuts.com) provide a much finer consistency for improved taste. Thanks to Tom’s perseverance (and almost daily discussions re portion size, food math, etc.), the boys have actually had a few days now where they were able to eat all or most of their dose without having to rely on nut brownies and cookies; they can eat (quasi) regular food instead. I feel like we’re moving toward normalcy (albeit a new normal, but as close as we’ve been in the past six months) where our kids can hopefully resume the healthy eating habits they once had.

Regardless of form, the daily dose has brought with it many unwanted side effects – altered eating habits, undesirable focus on food, high fiber/fat intake that replaces regular meals, emotional stress, decreased enjoyment of food – and a recent visit to their pediatrician noted a higher BMI for both kids. It’s not surprising, considering the amount of fat/calories they’re taking in via their daily dose, combined with the fact that they have less time for outdoor activities (as they’re trying to finish their dose after school). To add another layer of complication, Aviv’s environmental allergies flare up when on grass or around pollen, which is normally managed well through antihistamines, but at certain high-allergen times of year (like now), even 20mg of Zyrtec/day may not be enough to hold him together. We’re going to work on increasing their activity (apparently active play dates are more productive, from an exercise standpoint, then organized sports classes) to try to offset the increased caloric intake, while remaining diligent about monitoring Aviv’s risk factors and carrying his medications.

So whether we’re watching them eat peanut pesto or pecan waffles or cashew mac & cheese or hazelnut crackers or even regular food, all that keeps running through my mind is a desire to shout from the roof tops and dance with joy about the significant progress and amazing results A&A are seeing. Aviv will have his next six week appointment in November, and Ari won’t return for tests for three months. That should give me enough time to figure out the word that describes a run of four wins, as I’m hopeful that "trifecta" won’t be enough then.

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!