Schools

I have been hearing from many of you (in comments, emails and when we've met live) that capping off your day-to-day struggles of managing your child's food allergies has been the push-back that you've been feeling from your kids' schools. It sounds like the challenges come sometimes from resource constraints, but mostly from lack of awareness - either of the severity of the risk associated with food allergies, or of how to implement easy but critical safety procedures into the day. This has resulted in increased stress, near misses, and even reactions, and some of you have opted to home school because you felt that was the only safe option. It is scary enough when you don't have a child with additional needs to send him/her to another location each day and hope that the kids and adults around them will treat them with love and support; when you DO have a child who needs extra protection, the stress-o-meter blinks red all the time - even when you're around - and when you can't be around, you hope that the people who are will look out for your child as carefully as you would. I want to cry when I hear of schools that don't provide food allergic kids with a safe environment, as I know how terrifying that must be for the parents every single second that their child is there.

We were incredibly, incredibly fortunate to be surrounded by an amazing community of teachers, parents and kids who opened up their hearts and minds to learn about food allergies and to be our partners in creating a safe environment for A&A when they were allergic. Our schools went truly nut-free for us, and welcomed us into the process of selecting the food for snacks, training staff on EPI-pen use, sending home informational sheets to parents, passing out samples of allergen-free food, and more. A&A were able to participate in all of the food making, and eat all food served, in their preschool.  The school referenced the Jewish value "pikuach nefesh" – loosely translated to ‘saving a life’ - when informing families that dietary restrictions prohibiting the bringing of nut products to school were needed to best support children with severe allergies. Rather than paint food allergic children as a nuisance, the situation was seen through a compassionate, supportive lens. When I sent our former preschool director a note last week, telling her of the boys' progress and thanking her for all that she did to make us feel safe in the years our boys were in her care, she made me cry with the following response: "Incredible. We're so happy for you. We all learned together with your family so much about allergies, and we all rose to the occasion with much guidance and support from you and Orr. And mainly, we believe that it's an obligation and a privilege to do whatever it takes to support each and every child and family. I have to thank you for the partnership, support and mutual learning." There I sat, eternally grateful for all that she did, and she was thanking me. If there were awards given for most supportive and knowledgeable food allergy schools, A&A's former preschool and current day school would absolutely get my vote.

I did have a taste of a different reality when we looked at kindergartens for Ari. I toured the local kindergarten back in 2011 and asked the principal about their procedures for supporting kids with food allergies. She rolled her eyes at me - seriously - and let out an annoyed sigh before telling me, "Of course I'd have to negotiate a 504 plan with you, but I can tell you right now that I can't comply with it. I just don't have enough teachers to wipe down tables and things like that." I was stunned. I grew up in this lovely area, with its much acclaimed schools. It was quite a contrast, coming from our amazing preschool, where we were never made to feel like a burden or annoyance, to hear from a principal that she understood the legal obligation to provide a reasonable accommodation for a child's food allergies (which is what a 504 plan codifies), and would even sign the document acknowledging that, but couldn't/wouldn't actually comply. Well, compliance with that plan would have been the difference between our kids having life threatening reactions or not, so we walked away. I am well aware that we are very blessed to have had the luxury to walk away, and how much more blessed we were to have found the amazing school that we did. The school they are at now brought together teachers and administrators to talk with us prior to school starting to understand what would be safe and what wouldn't; they made the Kindergarten nut-free; they implemented processes to wipe down art supplies and music equipment before Ari's class used them; they arranged conversations with the school bus driver to make sure she knew what symptoms to look for and was trained on EPI-pen use, and she agreed to wipe down Ari's seat before he sat down every single day; they invited us to speak with the other families, and made sure they used a consistent message of importance and support; they called us to comfort us at 9pm the eve before the first day of school when we got nervous about how certain food issues would be handled; and they made Ari feel welcome - and us feel safe - every single day. They even rolled with it when we came to them last summer, before Aviv started, and told them about the clinical trial and the changes that would bring, and the role they would need to play in observing the boys. They've been supportive all along, and have celebrated with us with each milestone along the way. The kids in Ari's class celebrated him in class by congratulating and hugging him last week when he went negative, and the parents in Aviv's class - excited that they could actually bring PB&J's again - celebrated the progress and our joy along with us.

I'm sharing all of this to say that there are amazing, supportive schools and parents out there. There are also some who aren't, but sometimes it just comes from not understanding. Not understanding that there are really good peanut butter alternatives. Not understanding that mandatory hand washing as kids walk into the classroom not only cuts down on accidental food allergy contamination, but also keeps regular 'ol germs at bay. Not understanding that a policy of not sharing food is one that most parents prefer, food allergies or not. Not understanding that providing safe packaged treats (if treats must be given at school), rather than homemade ones, is not difficult. Not understanding that there are all sorts of nut-free foods that can be given in lunches, including the beloved 'bars'. Most of all, not understanding that what we're talking about is not a food dislike, nor a diet or preference; what we're talking about is a food that - if your kid has on his hands, and then touches the toy that my kid plays with, and the nut oil residue gets on my kid - can kill him. Our experience is that once people understood what was at stake, and how important it is that we all contribute to creating a safe environment (and they saw what we were willing to do to make it easy for people to do so), they were on board. We wrote letters to every parent at the beginning of each school year introducing our child, our family and our situation. We asked them for their partnership in keeping the school nut-free and provided them with grocery lists of nut-safe food items (by brand and store) to make it easy - we had already read all the labels and spoken to all the manufacturers, why not make other people's grocery shopping easier? We always volunteered to find the safe brand for any school food project, whether pizza day, baking projects, holiday treats, etc. We talked about the human side of this experience for us and our sons, not legal entitlements or angry disappointments. We organized play dates at our house or at parks to try not to burden other families with trying to sanitize their homes. We arranged for samples of certain allergen-free food products to be brought in, and we taught our kids to advocate for themselves and always ask questions (and receive permission) before eating anything. We tried to be a resource to anyone with questions, and to be grateful for every bit of support and understanding that came. We were lucky, and want to try to help ease the experience for families who aren’t getting that support from their schools. If you think that any of our documents (letters or grocery lists) might help you to build awareness and partnerships in your own schools, even if just to inspire you, please feel free to leverage them. (There are also a few other docs there, including some travel tips for flying with nut-allergic kids.) Please note that I only had peanuts and tree nuts in mind when I did the 'safe foods' list, and that it has not been updated in over a year, so always read labels carefully for your own situations, and defer to more current labels or information. (Sorry - that caveat was the lawyer side of my brain talking.) Also, lots of great information is available from FARE, the organization that emerged from the merger of FAAN and FAI. FARE funds food allergy research, increases allergy awareness and advocates on behalf of food allergy families, and has useful information you can share with your schools to help them be supportive and safe, too. Together, we can build awareness and compassion, one school at a time, until a cure is found for everyone with food allergies.

25 = freedom

What a difference a week makes. A week ago, Ari was unhappy and struggling to eat his daily dose and manage his bloated tummy. Today – after Ari went negative to two nuts last week, enabling us to drop his daily dose from 60 to 25 nuts – he’s happy, finishes his dose in one quick shot, and his tummy is returning to normal. On Wednesday night, at the end of his first day of his new/smaller dose, he hugged me and told me how happy he was to have a normal lunch that day. For the first time in as long as he could remember, he ate regular lunch food instead of dose. Such relief and excitement for him, in the form of a half bagel! Prior to Wednesday, in order to finish his 60 nuts a day, he ate dose for breakfast, mid-morning snack, lunch and afterschool snack. It was usually late afternoon or dinner time before he was able to eat anything ‘normal’ – not because it wasn’t safe, but because if he filled his stomach with anything additional, he wouldn’t have room for the dose. It’s a pretty small, 7 year old tummy, after all.

Now Ari & Aviv are able to finish their dose easily, usually by lunch time. Both boys’ dose now consists of their full, regular 4 gram nut protein dose of the one nut that they’re each still considered allergic to (fully desensitized to, but still showing up as a reaction during the scratch test), and then 2-5 nuts of each of the other nuts that they were previously allergic to, which amounts to approximately 25 nuts for each kid, per day. What a far, far cry from the 106 that Aviv used to eat, and the 60 that Ari used to have! It finally feels doable and sustainable. (It was technically doable for a while, but not sustainable.) Frankly, moving to 2-3 nuts of each of the nuts they’ve gone negative to is a bit of a leap of faith. Post-desensitization in the study, the job of the daily maintenance dose is to keep reminding the body of its desensitization so that it doesn’t forget. But what about when the chemical make-up of the body changes so fundamentally that no indication of the allergy remains? Does it still need to be reminded via a maintenance dose? There’s no instruction manual or data to consult regarding what happens next after a body is severally allergic, then desensitized, then goes negative… the best minds are on this cutting edge issue right now and believe that it reasonable to think that, because their bodies don’t reflect the allergy in their DNA anymore, they don’t need to eat the daily dose. We’re all a little wary of going cold turkey, however, as the stakes are so high, so we’re continuing to give each kid 2-3 nuts (depending on the nut protein composition) per day, per nut, just in case. It’s all relative… a year ago, ingesting 25 nuts would have been a very clear death sentence… now it feels like the miracle food that keeps them safe and gave them (and us) their lives back.

The boys were happy to help Orr make the lastest batch of dose tonight to reflect Ari’s new amounts. All of the careful measuring of nuts, multiplying times number of doses, adding chocolate and sugar to mask taste, then reweighing still occurs; this time, the final product is just so much less. His entire dose now fits into one cookie, and Aviv’s entire dose fits into one brownie. Unbelievable.

Speaking of unbelievable, we had the pleasure of arranging a speech by Dr. Nadeau in San Francisco last week to a packed room of allergy parents, kids and medical professionals. Orr was to introduce her and share our experience, and Ari decided he wanted to attend. (“Will she  talk about us?” Ari asked. Hearing that she would, he decided to forego a special movie night at home to come.) He met other kids his age who are in the same situation he was, and he told them that he’s not allergic anymore. While Aviv is still a bit young to appreciate the full magnitude of Dr. Nadeau’s research (and the huge impact on his life), it was beautiful to see Ari soaking it all in. He wanted to understand all of the details in her presentation and felt very proud afterwards that people congratulated him on going negative and getting to this point. To those who told us that it gave you hope to hear of SAFAR’s desensitization efforts and our success, we are so, so humbled and glad. I know how despondent one can feel, navigating life with severe food allergies, feeling like it’s only going to get worse… please know it doesn’t need to be that way forever. Dr. Nadeau and others continue to push the bounds of knowledge and research, and she is working with other facilities around the US to put forward a coordinated phase 2 of this multi-allergen trial. Other trials – including a peanut patch trial, twins research and sublingual trials – are progressing as well, helping to truly unlock this puzzle, and every data point and daily dose diary that we keep helps to bring this field closer to treatments and solutions. We are grateful that Ari and Aviv were able to be pioneers in this, and hope for more smiles, more trials and more amazing results for all. 

So many miracles

Tears are welling up, and I don’t know where to start. With such anticipation and prayers and hard work bringing us to today, I was worried we’d be disappointed with the boys’ test results. Instead – we’re over the moon. ARI WENT NEGATIVE TO TWO OF HIS THREE NUTS! Ari’s skin tests were clean as a whistle for walnut and pecan, leaving only hazelnut, and only a small reaction at that.  Aviv continued to test negative for five of his six nuts, with peanut still showing a small reaction. His pecan result was nothing to be concerned about, but there was the smallest touch of redness, so we’re going to keep a close eye on it and go back in 6 weeks to test again. It’s really so hard to believe that not only are the boys completely desensitized, they each only have one nut left that their bodies are even showing remnants of an allergy for.

Walnut (bottom row, 2nd from left) & Pecan (bottom row, far right) are negative!

Ari hears the news!

Cashew is on the far left.

I think back to the double blind food challenge day (part of the pre-trial testing) when Aviv was given cashew. It was November 2011, and 1.6mg of cashew protein triggered the beginning of a reaction – we just didn’t recognize the symptoms as they were unusual (complaints of ear pain). He continued with the cashew ingestion, and at 25mg he went into full blown anaphylaxis – hives and swelling everywhere, restricted breathing, wheezing… it was one of the scariest moments of my life as I sat in his hospital bed holding him, trying to calm him and slather topical antihistamine on his inflamed body, while oxygen, albuterol and other medications were administered. Contrast that moment with today, when his cashew test showed nothing. Nada. Zilch. Not even slight redness from the skin test prick point. I intellectually know that he eats cashews daily (without event) as part of his dose, but it was striking to see nothing appear under the ‘C’ written on his arm.

Aviv with his hero, Dr. Nadeau

The miracles keep coming, and we feel so, so blessed. Blessed to have gotten to this day; more specifically, to have gotten through the many incredibly hard days that preceded it. I spoke to a mom today whose son is in the same study as A&A. Her son is progressing well but his daily dose is now growing in size to the point where it feels overwhelming. All they talk about and fight about is dose, and it feels impossible. Beyond the logistics of making and getting in the daily dose, she flies from New York with her son every two weeks to go to SAFAR, taking redeyes to minimize the amount of school he misses. It’s a struggle to figure out how to logistically, emotionally and physically make this incredible opportunity work. She is amazing for doing all that she’s doing to help her son, and my heart ached hearing about their struggle. We have been there, too: struggling, crying, overturning stones, negotiating, scrambling for solutions – every part of what she’s going through. I am so grateful for this community of clinical trial families that shares tips with one another as we forge new ground, and always humbled by the support that we feel from everyone in our life during this journey. I really believe that the universe sometimes tests us, but ultimately throws us a life line when we need it. Just as we needed (and got) one when we were at the verge of dropping out of the trial because Aviv’s dose was so enormous and the emotional pressure was so crushing, Ari (& his tummy) needed one now. Going negative helps to inspire and remind all of us that this is real, that it’s life (and body) changing, and that it’s worth all of the effort and faith and tough moments. Whether Ari’s going negative came from his obsessive rule following and diligence in eating every bite that he’s supposed to every day, the addition of a daily antihistamine to his regimen, the mere passage of time, the universe answering prayers, or the sheer power that comes from all the fingers that this amazing community of family, friends, teachers, doctors, blog readers and beyond crossed today – it worked. He had tears of joy and pride in his eyes as he fell asleep tonight… Thank you for helping us get there.

Tummies and crossed fingers

Ari’s x-ray results were the best they could be in this situation – nothing truly wrong; just really bad constipation. As high fiber as 60 nuts/day appears to be, it’s a homogeneous and dense diet, and Ari’s body needs some extra help to deal with it. He’s on a daily double dosage of Miralax and increased water intake now, and seems to feeling mostly back to (the new) normal again.

While Ari’s tummy is settling down, mine is jumpy. We head back to SAFAR tomorrow for the boys’ maintenance testing (skin tests and blood tests). It’s been 9 weeks for Aviv, and 14 weeks for Ari, since they were last tested. Will Aviv’s negative test results persist? What about peanut – his last remaining allergy – will it go negative too? And the big tummy turner… Ari. Will he go negative to any of his three nuts? He’s longing for it, not understanding why it happened for Aviv and not him. We told him today that while we all hope for it, we don’t want him to be disappointed if it doesn’t happen yet. Sure. We can say that, but of course he will be. So cross your fingers and think good thoughts on Tuesday.

One final note… We had a ‘we’ve come a long way, baby’ moment yesterday at a potluck event at A&A’s school. As the boys were snacking freely from the buffet table (which they’ve learned to love doing), I spied a container of nuts that someone had brought to share. I stopped in my tracks for a moment, taking in the magnitude of difference… had I seen that a year ago, my blood pressure would have skyrocketed and I would have gone into triage mode… wiping down their hands, not letting them near the food table, being concerned that someone else around them would be eating the nuts (or just did, and then touched the chair/toy/etc. that A&A would then touch). Instead, I took a deep breath, took a picture (part of my chronicling of this journey!) and felt grateful for how far we’ve come. No wiping. No panicking. Just letting kids be kids. It doesn’t get better than that.

Tummy troubles

I'm having flashbacks of the old days. For years, not a weekend went by that we didn't visit the after hours clinic or hospital with one (or both) boys for one malady or another. To this day, we exchange personal holiday cards with one of the doctors who saw A&A so regularly at the after hours clinic that she became like family. These past couple of years have been different as the boys grew up and grew stronger, but this morning Ari took the familiar drive to the hospital once again for x-rays of his stomach. His digestive issues seem to be worsening, complete with bloating, constipation and accidents. We don't know (but suspect) a correlation to his eating 60 nuts/day - that's a lot of fiber for anyone to digest! The last month of Miralax and Pepcid haven't brought demonstrable results, so we're going to see what's going on inside.

When we told Ari that he was going for x-rays to help figure out what's happening with his tummy, he readily agreed, quietly telling me, "I just want it to stop hurting." Oof. What parent doesn't cringe when they hear their child utter those words, and know that they don't have the magic fix? Hopefully we'll have some answers, and can form a plan of attack, soon.