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.