Study #2: the adventure continues

I can’t believe three months have passed since I last posted.  Ari & Aviv had their final appointment in the Xolair/multi-allergen oral immunotherapy study in August, where they did final skin and blood tests. All was good: the skin test showed tiny dots of redness for Aviv on cashew, peanut, walnut and pecan; hazelnut didn’t show anything (amazing!) and pistachio had a small dot. Ari’s test had a tiny dot for hazelnut, and nothing at all for pecan and walnut. (Woohoo!) Since there’s no magic formula to look to yet (regarding exactly how much of each nut is needed in the maintenance doses), we talked it through with the staff and agreed upon a cocktail for each kid that may be altered in the future as we watch the skin/blood tests moving forward. For the past 3 months, Aviv has been having 4 grams of peanuts, 2 grams of cashew, 1200 milligrams of walnuts, 2400 milligrams of pecan, 300 milligrams of hazelnuts and 800 milligrams of pistachios in his daily dose since graduating, and Ari has had 4 grams of hazelnut, 1200 milligrams of walnuts and 2400 milligrams of pecan in his. While still a good sized amount, it’s so much smaller than what they used to have that it feels very doable for them. The boys don’t argue about dose anymore, other than to occasionally complain to Orr that they liked one batch of dose cookies better than another… Chutzpah! [I finally tried one recently – delicious! High protein, gluten free and filled with chocolate – YUM! I wish he’d make more so that I could eat them, too…] The funniest, most unexpected part of the daily dosing has been the reaction of their friends. Aviv’s class is very jealous of his dose (who wouldn’t want yummy cookies for lunch?), and I’ve heard from parents of classmates that their kids ask for dose in their lunch, too. Ah, the irony!

We had our second worry-free Halloween, and I watched the boys collect and sift through candy with awe and delight. They still aren’t familiar with a lot of the brands, and they asked a lot of questions as they explored this still-newish world. They ate 2 pieces each that night, and that was it. The next morning, Aviv reminded me that we needed to bring the candy to school to donate to the student-led candy drive for the troops, and there it went. No more Halloween candy in our house. I guess one of the silver linings of them growing up with food allergies is that they never learned the seemingly-ubiquitous ritual of gorging themselves on candy long after the costumes are packed away.

I don’t think Ari & Aviv think about their new reality much anymore – kids are resilient and these guys have just adapted to their new world – but I still do. I drove carpool on a field trip recently and quietly noted the circumstances in which Ari might have felt ‘different’ had he not been able to participate in the snack handout, food tastings, etc. They run freely at friends’ homes, make themselves plates at buffets, eat everything served at birthday parties, and enjoy new restaurants and adventures without fear. They occasionally ask us when they can stop having their dose, or why they still carry EPI-pens, and don’t seem impressed by our responses of, “we’re not sure; for now we need to…”, but that’s the best we have for them right now. As for us, we regularly talk to other families who reach out for advice on how to manage either dosing (if they’re in a trial) or the ongoing risk (if they’re not). We’re happy to do so, so please don’t hesitate to reach out if you think we might be able to help offer you some hope or practical tips.

We’re headed back this week for our first appointment under the new “Understanding Allergies” study that the boys were enrolled in (to allow the SAFAR team to keep monitoring and supporting them, and to provide some long term data), hoping that the maintenance dose that they’ve been eating was sufficient for their bodies, and that their tests will continue to show great results. There are no guarantees, of course, when you’re in a clinical trial… no years of data to point to to assure us that the boys will continue to be desensitized, no guarantee that if they stop eating their maintenance dose that their bodies will continue to remember all the hard work it’s done... The current belief is that the longer they take the maintenance dose, the higher the likelihood that the body will really remember, so until told otherwise, they’ll continue to have their daily dose. Viva la chocolate chip dose cookies!

Milestones

All continues to go smoothly with Ari & Aviv and their ability to live life as it is presented… no special accommodations, no special food, no fears, and most amazingly, no limitations. They’ve gone to sleepovers at camp and spontaneous play dates, enjoyed treats and sweets everywhere we go, and experienced their first donut shop. Ignoring the strange looks from others wondering why it took us so long at the counter (to first answer the barrage of questions, “What is that one? And that? What’s in there?”), Ari was the proverbial kid in the candy donut shop, and it was beautiful to see.

In awe at the donut shop

Trying one of each...

   

Proudly displaying bare wrists!

Beyond the continued firsts, there are three big milestones to acknowledge. Most recently, A&A were able to take off their Medic-ID bracelets. Their tests have been consistently good (in showing their continued desensitization to all of their nuts), so we were given the green light to remove the bracelets. Although I loved the many creative suggestions you sent me for how to celebrate that milestone, we ended up doing it small and personal, just the four of us talking through this step. It felt so big to us, and we thought the boys would be thrilled. They were giddy in the moment, but as is always the case with parenting, one should never assume kids’ reactions…  Aviv told me that night that he didn’t like the change and wanted another bracelet. What?? When asked why, he got a sad look on his face and told me that it feels terrible because now he doesn’t have our phone numbers with him wherever he goes. Ahhhhh….. Hadn’t thought about that. While as adults we may have seen the bracelets as symbols of their previous limitations, there was actually comfort for them in having our contact information close by. It was our practice to reference the bracelets when we went to large events (amusement parks, etc.), and told the boys that if they ever got lost, to look for a police officer or mom with kids, and to show that person their bracelet and ask them to call us. Now what, wondered Aviv. As with all things kids throw at us, we worked it out and he’s doing fine now (having spent time practicing our phone numbers), but it was a good reminder that the lens we see this allergy journey through is not necessarily the same lens that they see it through.  To that end, Dr. Nadeau’s staff (which has expanded significantly to support their many trials) will also now include someone trained to support families’ emotional needs and quality of life. I’m thrilled to see this evolution in study support, as the emotional roller coaster for families going through the trials is fast and furious.

The oh-my-gosh-I-can’t-believe-it’s-really-time milestone is that the boys are graduating from the study! After an amazing, life-changing 18 months, tomorrow is their last appointment in this Xolair/Multi Oral Immunotherapy Trial (OIT), and they’re graduating with flying colors. We could never have imagined, when we first met with Dr. Nadeau two summers ago, that we’d be able to see such mind blowing results and that our kids would be able to lead a regular life (& so quickly, at that). The results have exceeded our wildest dreams, and we’re both thrilled to have the boys graduate, and also a little nervous about what the rest of their lives look like. The boys ask a lot of questions, the most frequent being: “When can I stop having dose? Will I need to eat dose forever? Why do we still need to carry EPI-pens if we’re not allergic anymore?”  Boy, do I wish we had answers for those complex questions! We talk a lot with the boys about the research aspect of all of this, and how it’s bigger than their own experience. They like that a lot, and feel very proud that their participation helps other kids. It’s actually provided a context to discuss health care/data analytics (my professional niche), so at least they understand what I do at work now! We’ll continue to talk more with them about what all of this means and how they can continue to help others as time progresses. As for us and how we feel, we are so, so proud of our boys. This new life still feels surreal to us, and we continue to be amazed at the strength and tenacity of our monkeys (and the phenomenal baking skills of Orr, which continue onward) that got us here. When asked how he feels about the study coming to an end, Aviv says that he feels proud because it was hard but he knew he could do it, and happy, mostly because it means less frequent long drives and blood tests.

Ari's dose: 2 cookies = 1 day

Aviv's dose: 2 crackers +
2 Reese's PB cups = 1 day

Finally, although our participation in the Xolair/Multi OIT study comes to an end, we won’t be left adrift… The third milestone is that Ari & Aviv will begin a new study (“Understanding Food Allergies”) that will continue to conduct and oversee periodic blood and skin tests and their continued changes, run by Dr. Nadeau and her amazing staff. This UFA study will allow for the continued collection of key research data and the continued support for us (and other study graduates) as we move forward. We’ll continue to head down to El Camino Hospital (where the studies are conducted now) every few months, will stay involved with the Stanford Alliance for Food Allergy Research Community Council, and will continue to support all of the amazing work that SAFAR is doing to move the research in this area forward through continued studies and hopefully phase 2 work, so things may not look or feel very different for us on the surface, but the change in our life at core levels is enormous. To many more milestones!

Buffets, bowling and bracelets

Buffets, bowling and carefree summer parties… this is Ari & Aviv’s life now! They had their first all American buffet experience at a Sizzler recently (I didn’t know Sizzler still existed!), and while they were not impressed by the food, they did enjoy having free range at the dessert bar. They have been learning to bowl, sticking their hands in bowling balls with the only worry being everyday germs, and not that the previous user’s snack might have left residue that could stop their breathing. They continue to eat their dose each day without any problems – no reactions, no fighting, nada – all of which continues to feel miraculous.

Speaking of miracles I never really thought I’d see… we were told that the boys don’t need to wear their medic ID bracelets anymore! Those tiny silver bracelets, now both smooth and scuffed with wear, have been a part of their bodies since I can remember. Those bracelets were the springboard for hundreds of conversations with people about the boys’ allergies, a constant reminder of the risks that needed heeding and managing. The boys learned our phone numbers by reading the back of their bracelets. They never, ever removed them. And now they can. Even though we were given the green light to take them off, I haven’t told the boys yet. I feel like just announcing it and then taking off the bracelets somewhere between dinner and Lego building seems anticlimactic. I feel like we should treat the shedding of them as a symbol of their new freedom. Any thoughts on how to best do so? Bracelet removal party with a ‘break the chains of food allergies’ theme? I’m open to ideas. In the very early days of the trial, we had dreamed of having a nut party when they graduated (with everyone bringing their favorite food that the boys were previously unable to eat), not realizing that there were so many mind-blowing milestones along the way that made such a party seem obsolete. Maybe it’s not too late for a celebration… My creativity has been tapped with the Tree of Gratitude, the Wishing Wall and the never-ending parade of dose toppings; I’m now open to your ideas for how to best celebrate this visible milestone, so send ‘em my way.

While you think up fun ideas, we’ll head down to SAFAR tomorrow for the boys’ periodic testing where we’re hoping to see continued negative test results. Aviv saw me sitting down to type “my block”, as he calls it, tonight, and asked what I was telling people. When I asked for his suggestions, he said to let other kids who might participate in the trials know how hard the blood tests are. I’m sad that the blood tests continue to be rough for him (we’ll hear his very healthy set of lungs let loose tomorrow!), but there was a small smile that emerged, remembering how skin tests used to be much, much worse for him. He actually told Dr. Nadeau that he preferred blood tests to skin tests when he first met her at age 4. They had a long conversation about the difference between the tests, and she gained his trust by showing him the relatively painless skin test that she uses. No wonder he hated them… back then, his skin erupted in angry red itchy welts to even the smallest skin prick. How amazing to go from that to no reactions in a year and a half. So, so life changing.

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Not related to A&A, but potentially of interest to many of you:

FARE is launching a new series of free monthly educational webinars designed to help people live life well with food allergies. The first webinar, “Supporting Children, Adolescents and Parents in the Daily Management of Food Allergies” will be held Wednesday, Aug. 14 at 1 p.m. EDT. The speaker will be Dr. Linda Herbert, a clinical psychologist at Children’s National Medical Center in Washington, D.C. The presentation will cover anxiety, issues at school, bullying, peer social activities and more. Dr. Herbert will also provide a preliminary set of strategies to help cope with daily stress. To register: https://www2.gotomeeting.com/register/159466530

Dr. Herbert recently joined the Department of Allergy and Immunology at Children’s National Medical Center, where she is building a clinical practice and research team designed to address the mental health needs of children with food allergies and their families. Having seen our family go through an emotional, anxiety-fueled roller coaster both before and during the clinical trial, I applaud the recognition of (and support for) the mental/emotional effects of food allergies on families. Thanks, FARE!

When negative = positive

All of the tweaking of the dosage worked! At the boys’ last visit at the end of May, Dr. Nadeau looked at their skin tests and confirmed they went negative to all of their nuts. ALL OF THEIR NUTS!! It’s hard to believe. So in the vein of ‘trust but verify’, the results were checked against their blood test – also negative! – and then food challenges. Since they’ve dropped their daily dose to somewhere between 300mg and 2G per nut, Dr. Nadeau wanted to make sure that the boys’ bodies could still tolerate a full 4G dose. All but one of the nuts have now been challenged, with no reaction to any of them. Triple validation, it is! Never has a determination of ‘negative’ felt so positive to us.  We are still supposed to carry EPIs and rescue meds (Benadryl, etc.) just in case, as this is still a clinical trial with data being gathered and analyzed all the time, but there is a feeling that the boys are in a steady state of being negative to nuts, which is like a dream come true.

 

Speaking of EPIs, we just replaced our army of them (6 twinsets!) as we do annually, leaving us with a bag full of expired EPIs. We decided the kids are old enough that they should be more familiar with how to really use the pens, so we let them each practice responding to an allergic reaction and deploying an EPI on a lemon. (Citrus fruits are good to use for this, as their peels are strong enough to simulate skin, but not so slippery – like an apple – where the needle can slip.) They both seemed very proud of themselves to be able to do it themselves, and took turns practicing what to say to 911, how to use the EPI, etc. How they’ve grown and matured along this journey has been inspiring.

In addition to the big news, some firsts and sweet moments over the past month…

-the boys tried their first CrackerJack, and joined generations of kids before them in being confused by the strange prize inside.

-classmates’ families brought us meals to help us out during a tough time, and we were doubly grateful, realizing we never could have accepted that type of help (of food from contaminated kitchens) before.

-Daily dose continues on without any hitches or arguments. Aviv has continued his exploration of things to eat with his dose, finding that lemon curd is an excellent topping to a dose brownie. Orr also made him dose crackers that go well with melted cheese, apparently. Ari alternates between a straightforward dose cookie or dose brownie, leaving topping creativity to Aviv.

As excited as we are about each ‘first’ and the overall results, the boys seem quite blasé about it now. A friend – who had us over for the first time, and admitted that she didn’t previously because she didn’t feel she could make her house safe for us – watched Aviv eating his nuts and said to him, “It’s a miracle! You’re a miracle! Do you feel like one?” In response, he barely raised his eyes up from his snack to shrug, “Neah.”  While he may not feel like a miracle, he is aware of the importance of this work as being bigger than the two of them. Every Friday night we have dinner together as a family, and each person answers three questions: what are you grateful for that occurred this week; what was hard for you to do this week, but you did it anyway; and what did you do to make the world a better place this week. To the last question, Aviv recently answered that he gave blood for Dr. Nadeau’s study to help other kids not be allergic, too. Making the world a better place, indeed.

Gratitude

Themed cookies to celebrate
their first baseball game

This has been a tough month (unrelated to A&A and their journey), so the continued hope that this clinical trial and the related research brings into my family’s life has been especially gratifying. One source of joy was being in New York last month at FARE’s annual spring luncheon, where Dr. Nadeau spoke and two wonderful women were honored who have done so much to further the cause of food allergy awareness and support the research needs. Being in a packed room of parents of children with food allergies, medical professionals and supportive friends and community leaders was amazing. To those of you who I met there and who shared your stories and challenges with me – thank you. The need for more research, more clinical trials, and eventually, treatment has never been more needed, and your stories underscore that. To those who told me that reading this little ‘ol blog gave you hope, I am humbled. Hats off to FARE for raising more than a million dollars related to that luncheon, as every dollar is needed to give families, doctors and schools the information they need when they need it,  and to continue supporting groundbreaking research like Dr. Nadeau’s.

Speaking of, I felt fortunate to celebrate the creation of an endowed faculty position for Dr. Nadeau at Stanford to help ensure that she and her amazing team can continue to do research toward treatment of food allergies. Knowing that she can continue doing her work there is reassuring and critical for this field to advance quickly, and we are so thrilled and filled with hope for the better future that she will help create.

With the boys, all continues to progress smoothly. They take their daily dose without so much as an argument (Orr has perfected fudge-like dose brownies that they love), and continue to explore and enjoy the world around them without fear. I smiled watching Aviv give his friend a Reese’s Peanut Butter Cup the other day, after his friend was jealous of the one in Aviv’s dose. Jealous of Aviv’s dose! Just writing that makes me giggle. The ‘firsts’ also continue… enjoying chocolate-dipped ice cream cones brought smiles as big to A&A’s faces eating the cones, as it did to mine watching them take in the thought of it, then dig in. 

We also had a turning point purchase (that follows in the footsteps of such things as buying Nutella, Bamba, Reese’s products and ordering from nuts.com) this week when we bought an item that used to make me shake as I walked past it in the store, as if it would somehow jump out of its box and contaminate us. Nut-Thins. Tasty little gluten-free crackers that look harmless but were made out of the enemy: nut flours. Who would have thought of those entering our house? Not me. Yet here they are, now.

More gratifying to me than the firsts, actually, are the things that have gone from being novel to regular occurrences. Drop-off birthday parties, eating at buffets, participating in potlucks at school, going to Thai restaurants, enjoying carnival rides and chess tournaments… these are all things that we went from not being able to do, to reveling in them for the first time, to now incorporating into our routines. I still quietly appreciate how far we’ve come in each of those moments, but the boys have come to expect them now, and aren’t as conscious of the magnitude of the miracle. I make a point of reminding them of their hard work that enabled them to do these things, but they seem quite nonchalant about them.

We head back down to SAFAR this Tuesday for more testing. (Just in time, too. We have to stop the boys’ antihistamines 72 hours before testing, and Aviv always starts to turn into a puffy, congested, crankypants the day before testing, as all traces of the medicine have left his body. He’ll stay that way until right after the testing ends, when he can pop a Zyrtec and resume normalcy.) At this point, we go every six weeks in order to keep a close eye on the nuts that have gone negative and to see how the fine tuning of the daily amount affects their bodies’ reactions. We’re hopeful that the changes we made last time (upping Aviv’s cashew dose to 2 grams and upping both boys’ pecan dose to 7/day) will have brought cashew and pistachio back down to negative, and kept pecan at bay. Fingers crossed. There is also a relatively new tradition at the clinic, where there is a notebook for kids to leave messages for other kids going through the trials. I asked the boys to think about what messages they might leave, and will let them have the last word for today…

From Ari: “It will get easier as you move through the trial. It’s a whole new life now. You get to go to different bakeries and restaurants, and you don’t have to worry about a thing!”

From Aviv: “It’s been an amazing journey. We’ve traveled from Israel to California to Costco to Safeway...  All because of Dr. Nadeau!”

Indeed.

Play ball!

Go giants!

Last Wednesday brought important information and new milestones.

First, the new first: a real baseball game! No longer fearful of peanuts on the ground, the boys watched their home team play live and enjoyed their first ballpark food. Neither wanted to eat the traditional peanuts, and Ari expressed surprise that “people weren’t throwing peanuts around” as he had imagined, but it was a good experience.

Second, their recent testing appointment. It was mixed from an emotional standpoint, but very rich from an information standpoint. On the plus side, their skin tests showed that they both continue to be negative to walnuts, Aviv continues to be negative to hazelnut, and the upping of the pecan dose for both boys to 7 pecans/day (1050mg, which we have been doing for the past 6 weeks) seemed to have had the desired effect, which is to decrease the redness we had seen during the skin tests in their last two appointments back to a very, very small showing. This seems to indicate that while a daily low number of nuts may not be enough to maintain the body’s negative status for some nuts and some kids, it appears that modifying the amount can realign the body fairly quickly. Mind you, this is just the experience of two kids; not enough data exists yet to make generalizations, but that’s what we saw for A&A with pecan.

Ari's back: some redness for hazelnut 2nd from the top right; positive control on the upper right.
Walnut (top left): nothing! Pecan (bottom right): tiny mark.

Aviv's cashew test is the middle of the bottom row,
almost the same size as the positive control (upper left).
No indication for walnut (top right); tiny mark for pecan (bottom right).

On the down side, Aviv’s skin test for cashew was positive, with a related small amount of redness for pistachio (the two nuts are genetically very similar). We’re going to increase his cashew dose from 2 nuts to a full 2 grams of cashew in an attempt to bring it & the pistachio back down. Luckily, since Aviv’s peanut dose is currently down to 2 grams/day (due to the onset of the pollen season causing those with environmental allergies to decrease their daily dose to avoid overtaxing their bodies), he can absorb this increase without feeling like his dose is unmanageable.  What we are taking from this turn of events is that there is no magic number yet that has emerged as being THE number of nuts that will maintain the body’s desensitization (or in this case, its having gone negative) to a nut. We knew when we dropped to 2 nuts per day of the ones the boys had gone negative to that there was a chance that that wasn’t enough. Heck, Aviv was the first to enter that holy grail of ‘going negative’, and we knew that he couldn’t sustain the full maintenance dose anyway, so we were all willing to take the chance in the name of research. Monitoring their blood and skin tests closely every 6 weeks (in addition to our own daily observations and detailed daily diaries that we keep) has enabled the SAFAR team to stay on top of small changes, and quickly tweak the daily dose accordingly. I’m not as disappointed by the reoccurrence of the cashew skin test reaction as you might think, as I feel comforted by the quick and affirmative response that the increase in pecans had. We’ll see in 6 weeks what the even bigger increase in cashews bring. (Not as dramatic, but still worth noting is that Aviv held steady with peanut, and Ari did the same with hazelnut, meaning that their skin test results haven’t changed at all; both continue to show quite small wheals.) Stay tuned.

Typical scene during our testing appointments; waiting for the numbing cream 
to take effect before beginning the blood work.

Boys waiting for their skin tests to finish.

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We decided to get away this weekend, so took a quick trip to Half Moon Bay. I continue to relish in the freedom the boys feel to eat anything they see, to eagerly approach a buffet (well, Ari more than Aviv, but that’s just due to eating preferences and not allergies), to enjoy s’mores around a campfire, and to be able to eat their dose easily on the go. It’s still a decent amount of work to prepare the boys’ dose and package it each day, but it seems like just part of daily life now, like packing lunches or checking homework.

This is what the daily dose prep ritual looks like:
all items spread out for packaging into small
containers with labels.

We’ve come so far from the pre-trial days, and even the height of the dose escalation days just half a year ago, when just the thought of the mound of nuts that needed to be ingested made us all cringe. I was reminded this week of the anxiety that occurred when we went to Disneyland last year, when Aviv refused to eat his dose and we stood crying, shouting, begging and ultimately calling Tina (the always amazing, heart and soul of the SAFAR staff) to bring us back from the edge. Patiently she talked with Aviv to convince him to eat his dose, when not even the threat of not entering Disneyland could do it. To go from severe allergies, to fights over eating huge amounts of nuts, to easy breezy trips away with hardly a care as to food or dose, in a little over a year…. That’s truly amazing. I can’t think of a better way to celebrate these miraculous advances that Dr. Nadeau and other leading researchers are making then by attending the annual FARE luncheon this Wednesday. (If you were familiar with FAAN or FAI previously, FARE is the new, single voice of the food allergy research and education movement that emerged when those two organizations combined.) I’ll head to New York to hear Dr. Nadeau speak and to honor two wonderful women who have put in countless hours to make sure that people have the information they need to protect their families, that legislation to properly safeguard our kids exists, and that monies are raised to support critical research and education efforts. I am so grateful for all that they have done… I remember when we first got our diagnosis with Ari, and how surreal and alienating it all felt. I pored over the useful information on FAAN's website to help me get my arms around our new life and figure out how to function within it, and ultimately to manage it. Now, as food allergy parents, it’s not just about managing our restriction and anxiety-filled lives; it’s about moving toward and enabling a different and better life. I am so excited for Wednesday when I will be surrounded by almost 700 people who also care deeply about food allergies to celebrate the efforts of Dr. Nadeau, the amazing parents/advocates/leaders who enabled this research, and the results that we live and breathe each day. Can’t wait!

Who's the luckiest?

A few snapshots from the week that represent the surreal reality that we're in...

Aviv had his annual well kid visit this week, and the question came up around updating his medical history. "Allergic to peanuts and tree nuts", our pediatricain read from Aviv's chart, and looked at me with a question mark. Honestly, I didn't know how to respond. We don't fit squarely in the 'allergic' or 'not allergic' box anymore. We agreed that neither accurately reflected our reality, so agreed to go with a hybrid/custom response of listing the nut allergies with a notation that Aviv has been desensitized and is currently in a clinical trial. OK, that worked for that situation, but what about others? For example, how should we update our food allergy action plans? All kids with food allergies should have one with clear instructions regarding what to do in certain scenarios (accidental ingestion; upon certain symptoms; etc.). We've had many of these plans in the past 6 years, nicely laminated with a current photo and kept in their classrooms, camp areas, etc., and it was always clear to me how to fill it out. Now it isn't. We'll look to the SAFAR team to help us with this next step as we navigate being somewhere between identifying as "allergic" and "not".

The other moment of wonder came after Orr returned recently from a trip to Israel with a suitcase full of edible treats. Among the treasures was Bamba - a peanuty, puff-like snack. (Think Cheetos but replace the day-glow orange powder with peanut powder.) Bamba on its own is a fascinating story for the food allergy world. Like in the US (where the majority of babies eat Cheerios as their first finger food), the vast majority of Israeli children start with Bamba as their first finger food as it dissolves in the mouth. Why is that fascinating? Because almost every child in Israel under the age of one starts out eating Bamba, and their rate of peanut allergies is extremely low; in fact, Israeli children eating Bamba in their first year of life were found to be 10 times less likely to develop a peanut allergy than their UK counterparts who didn't ingest peanuts. The impact of this country-wide body of data helped inform the American Academy of Pedatric's recent (January 2013) recommendations on infant feeding practices, namely that delaying introduction of foods like wheat, cow's milk dairy, eggs, fish and nuts may actually result in an increased risk of food allergy or eczema, and the early introduction of allergenic foods may prevent food allergy in infants/children.

Back to our lives: needless to say, A&A have never had Bamba during any of their trips to Israel. But they do love junk food, so as soon as Orr pulled it out, they wanted to have it. After summer trips filled with steering Aviv away from it, he now not only got to eat it, but used it to fulfill his peanut dose requirement for the day! Surreal, all around.

Two big things are coming up for us next week...

We head back to the SAFAR team on Wednesday for routine skin and blood tests, with our fingers crossed that the pecan & peanut skin test results either hold tight from last time or improve. We've upped both boys' daily pecan dose to 7/day, hoping that that helps to keep them negative, and Aviv has cut his daily peanut maintenance in half during this environmental allergy season. I'm a bit anxious, but we'll see on Wednesday where we're at.

After their appointment, the boys are going to experience another first: a major league baseball game! They've never been to a ballpark, thanks to the down home, American tradition of eating and throwing peanut shells on the ground at games. Previously, the mere thought of trying to protect them in that type of environment was enough to send our heads spinning. Now, we're giving it a whirl. When we told the boys that they were going to their first Giants game, they were initially very excited. Then Aviv got quiet, looked down, and nervously said, "But there are peanuts there, all over the ground, and I'm still allergic to peanuts." I held him and reminded him that he can be around peanuts now, and that, in fact, he eats them everyday. I reassured him that he is desensitized to peanuts and that he'd be fine there; that the peanuts wouldn't hurt him. He stayed curled in my lap for a few seconds absorbing that information, and then he must have decided to believe me, as he jumped up and ran right back to what he was doing, as if nothing had just occurred. I am always in awe of kids' resilience. As adults, we may be bruised and (virtually) bleeding in the wake of some type of upheaval (emotional, verbal, physical) that spewed from our kids, but they bounce right back to what they're doing. There's definitely a lesson in there for us parents - if only we weren't so bruised and tired to find it!.

As Aviv got the last word in my last post, Ari gets it today. He brought home a workbook from school that has pages preprinted with the first half of a sentence that the kids are supposed to finish themselves. I flipped through it and found an entry from January 7th of this year, where he was asked to finish the sentence "My luckiest day...". Ari wrote (spelling corrected):

"My luckiest day... is when I started the trial. It changed my life. Now I can eat nuts! Now I can eat anything I want!" 

In this crazy, materialistic, entitled, instant gratification world we live in, to have two kids who understand and appreciate how lucky they are to be a part of this groundbreaking research - I think that I am actually the lucky one.

Of freedom and miracles

Making charoset

The story of Passover has felt very personal for me this year. It was a year ago this month that we began the dosing in this trial. Last March, Ari & Aviv began eating their most feared food under our (and SAFAR’s) watchful eyes. So it was with beaming pride a few days ago that, as the boys and I made charoset (a Passover food traditionally made from apples, raisins, honey, cinnamon and nuts), I asked them if we should include nuts in it this year for the first time because we can. Their response was a resounding “NO! Nuts are gross!”, causing me to chuckle. Passover is the story of freedom and miracles, after all, and both our ability as a family to go anywhere and eat anything, as well as the power and luxury to choose not to, represent a new freedom and miracle for our family.

As we read the story of Passover at our Seders this year, I couldn’t help but be inspired by the faith that Moses and Nachshon had when faced with the unknown. They were told that they were going to a better place and that it would be hard along the way, and to just trust and do it; they didn’t know what was in store, what each day would bring, or how long it would take. Our journey in this trial has required tremendous faith as well, especially in the moments that felt most insurmountable (such as when Aviv went on a hunger strike rather than eat his dose of 106 nuts per day last August), as well as when changes to the process made us feel like we were holding hands, jumping and trusting (without years of conclusive data to reference), such as we’ve done over the past few months in significantly decreasing the boys’ dose after they’d gone negative to certain nuts. We don’t know how decreasing their dose to minimal amounts will impact their overall desensitization or their having gone negative, but we have faith and we do it. So when Dr. Nadeau told us a few weeks ago that Aviv (and other trial participants who have environmental allergies) need to cut their dose in half – not because of positive news (such as a negative skin test), but because the pollen season is strong now with the start of spring, which resulted last year in an increase in reactions for some participants - we drew on our faith in her to comply. Despite reassurances to the contrary, we can’t help but feel it as a bit of a setback. We have been told that this is a temporary change in dosing (until pollen season dies down), but as we are reminded of frequently, there are no clear roadmaps or guarantees in a clinical trial. Like Nachshon entering the Red Sea to lead the Israelites through it despite the water not parting until he was standing in it up to his neck, we believe and we continue moving forward, even as things may seem scary around us. I hope that doesn’t sound too dramatic. It doesn’t feel out of proportion to me, living this reality of fears, hopes, ups and downs, and counting on faith to help ensure that the hopes and amazing results continue.

A&A holding the NY Times article, and
celebrating with a previously-forbidden pastry.

Speaking of living this reality, we are grateful that the exposure that has come from the New York Times article (& the tremendous press coverage that has followed) has elevated the conversation, provided a glimpse into the life of families with severe allergies, and shined a light on the importance of more research. Ari & Aviv even asked for their own copies of the article so that they could proudly share it with their friends and classmates. I find myself talking about food allergies and the amazing hope that these research trials bring almost daily.  I’ve had the pleasure of meeting with other food allergy moms and their kids in recent weeks, and I am so in awe of them all. Hearing their stories of struggles with their schools (having to decide whether to home school, fight for a classroom aide or brave it), to finding ways to allow their kids to go on school sleep away field trips (I cannot even imagine that level of anxiety), to not being able to leave a child’s side at sports practice for fear of the next reaction. These trials bring them all hope that their lives won’t always be that way, and we can certainly relate.

Two other moments from the past few weeks that made me reflect on our journey…

Another Orr cake masterpiece

Aviv had his 6^th birthday a week ago, and Orr spent weeks planning for and then creating an amazing custom cake for his birthday, as he has for every birthday of Ari and Aviv over the past 6 years. Orr’s cakes are amazing creations made with love through hours upon hours of work. It started because we didn’t have a choice… there was nowhere we could buy a safe birthday cake, as there are no nut-free bakeries where we live, and he wanted them to be excited by their birthday treat. This year, we had a choice. We could buy any cake we wanted, and we discussed doing so. Again, the boys jumped in with a resounding No! – as did Orr – because these acts of edible love are such a part of our lives now that even though we can choose another path, we don’t want to. Some habits are hard to break.

A&A's matching Medic-ID bracelets inscribed
"Severe Nut Allergy - use EPI-Pen"

The second moment of pause came when I realized that our EPI-pens were expiring, and that I would need to replace them. They’ve expired and we’ve replaced them every year for six years, but this year felt different because I didn’t think I’d be doing it again. Both boys moved up from EPI Jr’s to the regular/adult dose of epinephrine this time around, and I’ll admit to feeling a twinge of disappointment that we need to still have them. Maybe I was unrealistically optimistic. We’ve been so lucky to have not had any reactions since the early days of the trial, so between that and watching the boys eat nuts each day, I guess I harbored the hope that we would not need to shlep them around anymore. To be honest, it feels a bit confusing sometimes to be carrying EPI’s. I know intellectually, of course, that we can’t be complacent; that we need to continue to be vigilant of a possible reaction, especially now in this season of heavy pollen and hotter days (both of which can make a reaction more likely and/or stronger), and we are. We don’t leave home without the EPI’s, an EPI set is still in each of their classrooms, they each still wear their Medic-ID bracelets pronouncing their allergy, and I still jump if I hear one of them wheeze… yet I still felt a brief moment of sadness when I placed the call to our doctor asking for a prescription for 6 new sets of EPI pens. The reality of being in a trial is that results are not guaranteed and things change, so having faith in the unknowns and the big picture is critical. Luckily, Dr. Nadeau makes it easy to have faith in her, and that faith has brought us such freedom.

As is often the case in our lives, Aviv will have the last word. During a bedtime conversation recently, Aviv told me about a kid in his class who he thinks is the smartest.

Me: "What about you? I think you're pretty smart..."

Aviv: "No. He is the smartest. I'm the luckiest."

Me: "How come you're the luckiest?"

Aviv: "I'm the luckiest because I have Dr. Nadeau helping me!"

A true Passover miracle. I'll raise a spoonful of charoset (with or without nuts) to that.

Thank you, New York Times!

I’m thrilled to share that this week’s New York Times Magazine features the Stanford Alliance for Food Allergy Research (SAFAR) as its cover story, providing much needed visibility and insight into the amazing work that Dr. Nadeau is tirelessly doing, and the lives - including ours - that she is helping to change. Coming together for this story photo with many of the trailblazing children whose lives have been improved through Dr. Nadeau's research was awe inspiring, knowing how different all of their lives were a few years ago.

To those of you who have food allergic children, I know you’re going to cry while reading the article, as I did, because it is so real and hits so close to home, and because it so eloquently captures the emotions of fear (and now hope!) that we’ve all had.  As you read and well up, know that I feel your tears, and I know your moments… the moments of turning away so that your child doesn’t see you cry after you’ve narrowly averted a near fatal encounter with a cross-contaminated bite of food… the moments where you are mama grizzly, standing up for your child’s right to a safe environment where he can read a library book and go to school without fear… the moments of driving at breakneck speed to get to the hospital because your child is having a reaction. I know those moments because I’ve lived them too, and though the rawness of the accompanying emotions are a bit more distant for me, this article brought them all back. What makes me grateful and hopeful beyond words is that Dr. Nadeau’s work is getting us all closer to a time where those emotions can be distant for all of us.

A&A with Dr. Nadeau and photographer Art Streiber at the photo shoot

Bump in the road

I intentionally didn’t write last night, as I was trying to get my arms around the panic that started to well up inside of me. A full night’s sleep (we all collapsed upon our return home) and 24 hours of perspective helped, though I still have residual anxiety…

Yesterday we went to SAFAR for tests, 6 weeks after our last appointment. At this stage in the trial, we would normally return every 3 months, but at our last visit in January, Aviv’s skin test for pecan had some redness. He had previously tested negative to pecan, so a little redness – not necessarily a full ‘wheal’ or welt, but redness - was curious. We decided to keep a close eye on it by returning in 6 weeks. Despite the previous negative test, both boys have been including 3 pecans in their daily dose just in case. Remember, this is completely new territory here… no one had gone negative prior to this, so the data for what to do when it occurs just doesn’t exist.

Back to yesterday… I gave blood (for research purposes), both boys gave blood (with some yelling and screaming), and then the skin tests began. The cashew, pistachio, walnut and hazelnut for Aviv continued to show nothing – totally negative! Same for Ari with walnut. But the pecan on both boys (along with peanut, and hazelnut, respectively, which they haven’t yet gone negative for) appeared red, and more so than the redness we saw 6 weeks ago. What does that mean? I wish I knew. No one knows. Was it just redness (which can result from the mere prick during the skin test, and may not indicate any problems), or an actual wheal? As we learned early on in this journey, that's what it means to be in a trial... they're trying out different hypothesis and approaches, and we're along for the ride. There’s no definitive answer to my many questions of what to do next, what might help, could they lose their desensitization, is everything ok… As Dr. Nadeau reminded us today, we are on the edge of the research on this topic, and from what our medical team understands and knows from other trials, this should work. We’ve decided to increase their pecan intake to 7/day and come back in 6 weeks for more tests, but truth be told, my stomach is in knots. I know that both boys have been fully desensitized, and I know how much freer our lives are now. I also know that redness and possible wheals on skin tests where there previously were none isn’t what we want. Why the change? Do they need to have more pecans per day to keep up the status? Does this mean that their bodies can/will regress? The answers to these questions are not known, and that absence is making me crazy right now. Perhaps this isn’t a big deal, but we just don’t know. We’ve been so, so lucky that things have progressed smoothly until this point, and felt the miracle of the boys going negative to so many of their nuts so quickly – that wasn’t expected to happen (if it was to happen at all) for another year or two.  We’re hoping that this is just a minor detour… that we just need to up the pecan dose to get things back to heading the right direction, and be patient. Unfortunately, I’m not great at being patient, especially when the stakes are so high.

Pecan is on the bottom left for Ari

Pecan is on the upper right for Aviv

We’ve decided not to share with the boys what’s going on, as there are so many unknowns right now and we don’t want to worry them unnecessarily, especially when we don’t really know if this is something to be worried about. They are so proud of themselves for all the hard work they’ve put in and the amazing results they’ve achieved, and we don’t want to squash their excitement and pride.

Perspective is an interesting thing… Had the boys not gone negative over the past few months, we would have been over the moon about yesterday’s skin test results for pecan as they were so mild. We would have continued to be thrilled by the tangible results we experience every day, that is, that they eat these nuts with no reaction whatsoever. But now that we’ve gone further, it’s hard to feel like we might be slipping backwards. So I'm filled with hopes...  I’m hoping that this is just a minor bump in the road; that giving them more nuts will go smoothly so that we’re not back into the world of fighting over dose; that Orr & I do our best to bottle up our own unease so the boys don’t feel it; that in six weeks the skin tests show less-to-no redness for pecan; and that we find that we worried for nothing. Those are my hopes for tonight.