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.