Each day, more knowledge & more simple pleasures

It’s amazing how much we learn each day during this trial. Every time I sit to write my next blog post, I look back at the previous one and feel there’s so much to share, even though usually less than a week has passed.

We learned more about the protocol and next steps this week. While I was disappointed last Tuesday that Aviv wasn’t able to updose and move on to his ‘Week 24’ appointment next week due to his upset tummy, it turns out that he wouldn’t have been able to move to Week 24 even if all was well with him. The original protocol for this trial was for treatment of 3 allergens, and the updosing schedule was written for that. When we first began, we were told that the boys could only be treated for 3 allergens each, and we weren’t sure how we would prioritize Aviv’s allergies and what it would mean to treat 3 nuts but not the remaining 3, when the risk of cross-contamination would remain. At some point in the first month or so of the Xolair shots, the decision was made to allow Aviv to include all 5 nuts that could be treated. (There is one more – pistachio – that he’s allergic to, but the treatment of that one hasn’t been cleared yet by the FDA due to lack of a clean source of pistachio protein. Pistachio is apparently the close protein cousin of the cashew, and they’re hoping that treating cashew will result in a virtual treatment of pistachio through a buddy effect.) Anyway, while the decision was made to allow the inclusion of all 5 nuts, the protocol was only written for 3, so none of the schedules or processes account for 5. Since Aviv is the first to reach this milestone for 5, the team needs to now amend the protocol and figure out the rest of the details (updose schedule, Week 24 process, etc.).  Hopefully, they’ll get those details worked out by next week, and Aviv will continue his updosing. We are guestimating  (based on previous updose percentages) that it will take another 3ish updose appointments for him to get to 4000mg/nut, which means that – if there are no delays – he could get to his Week 24 by the end of summer. Fingers crossed.

Speaking of the kids, they’re doing well. We seem to have gotten into a better groove on doses, honing the right balance of dose cookie or banana bread, plus hazelnut milk, plus one nut that is being given separately for various reasons. As the boys discussed which dose vehicle they each prefer the other morning, I heard them talking… “I like the banana bread best,” said Aviv. “I don’t,” said Ari, “it makes me feel like I’m going to throw up.” Aviv, with a calm maturity about him that I hadn’t been sure was there, turned to him and said, “Yes, it makes me feel like I’m going to throw up, too, but I know it’s helping me to not be allergic to nuts anymore, so I just eat it.”

After a week of toast, apple sauce and probiotics, Aviv’s tummy seems to have calmed down and he’s tolerating his doses well. To keep things from getting too boring, Orr shakes things up every four days, so today Aviv moved from banana bread to cookies with Reece’s Pieces on top, while Ari stuck with French macaroons. Mind you, none of these items have any real flour in them; all (or 95%) of the regular flour has been replaced with nut flour (ground up nuts). If anyone is looking for a high protein, nutty treat, we’re happy to share the recipes! : )

As for Ari, he’s sailing along at his max dose of 4000mg/nut. I had to take a picture of the bowl of nuts that Orr was putting into Ari’s cookie batch; it was just so crazy looking. This bowl (along with 20 additional chocolate covered hazelnuts, that Ari wanted to eat separately) makes up Ari’s dose for the next 4 days. It weighed in at 13oz (without the 20 additional)! There was a sweet moment where we showed Ari the bowl and pointed out that he used to not be able to stand next to nuts, and now he was able to eat this whole bowl. He just looked down at it for a bit, then looked up with a twinkle in his eye, clearly aware of the magnitude of the moment.

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People get excited about weekends for different reasons… sleeping in later (not if you have kids!), time together as a family, lazy days… our kids get excited about weekends now because it means they get to have a regular breakfast. Instead of our usual schedule of pushing dose in them in the morning before camp – without any other breakfast food, so as not to make them too full for their dose - we have more time together, so they can leisurely enjoy real breakfast food. Aviv (who has always been a fan of a huge breakfast) reveled in cereal, yogurt, crumpets and waffles this weekend, happy to be back to his old friend, carb-a-palooza. Such a small thing like having a meal that didn’t start with (or be replaced by) his dose made him SO happy; I couldn’t say no as he asked for course after course, knowing we’d have plenty of time later in the day to give it to him.  It’s the little pleasures, and for a kid who used to put down half a box of waffles in one sitting, he had sure missed this one.

Holding at 11,200mg

Some firsts are steps forward, and some firsts aren’t. At today’s updose appointment, Aviv wasn’t permitted to updose; he’ll stay at his current dose (2240mg/nut; 11,200mg total) for a little longer, as his body is having some trouble absorbing the current dosage. This is the first time that we haven’t been able to updose on schedule, so there was a twinge of disappointment, but the truth is that we have been pleasantly surprised at the fact that we have been able to (until now) updose every two weeks, so no complaints.

I wasn’t entirely surprised that he wasn’t cleared to updose today… The past two weeks have had some ups (they really liked the flourless chocolate nut cakes and nutty banana bread that Orr made, and got to have Nutella for the first time… Aviv is in love with it!), as well as some lows. Getting the doses in continues to be challenging, and Aviv has had digestive issues each day, seemingly associated with his dose (but he’ll do some tests to make sure there isn’t something else going on in his body, to confirm). Last night was a particularly low point. After their first day of camp, which ended late and only got them home at 4:30pm, they needed to cram in their entire dose, and Aviv’s body was not happy about taking in so much at once. After many pronouncements that he was going to throw up, he did. (Have to give this boy credit… he’s learned a valuable life skill in all of this, which will serve him well in his college years: he knows how to vomit carefully, without making a mess. Thank heaven for small favors.) As I stood with Aviv in the bathroom, thinking of his past few weeks of tummy pain, frequent bathroom trips, angry outbursts, frustrated and sad moments, his nanny's concern that she doesn't feel capable of handling this, and now vomiting, I felt terrible and the scratchings of doubt started again… are we really doing the right thing by pushing him/this forward? Is it just too much for him? The physical and emotional impacts of this trial have been palpable for Aviv, and we are working a number of different approaches to try to support him. Beyond the creative food preparation, we’re working with a homeopath and interviewing therapists to try to best equip his body and mind with the tools to help him weather this process. Having psychotherapy support to help the mind adapt as the body changes so rapidly just makes sense, and we’re trying to find the right fit. Trying to cover all bases, I spoke to the boys’ camp today to see if it would be possible for them to have some of their dose during the day. The irony is that the camp is nut-free (which we pushed for a few years ago), and now here we were asking if we could bring some nuts for them to eat! I am grateful that they were so understanding and supportive, and they agreed to treat the boys’ dose like medicine (as the FDA does) and allow it, separated from other kids. So we will spend the next two weeks with Aviv trying to get his tummy settled and his body tolerating the dose, so that he can go back to updosing.

Ari, on the other hand, did updose to his final dose today – 4000mg! – which means that his updosing is done, and assuming all goes well for the next two weeks, on July 2^nd he’ll have his big testing day (“Week 24”, it’s called) where they will try to raise his intake level significantly over the maintenance dose of 4 grams (to 6 grams or even higher), to validate that his body can truly tolerate ingestion of any of his three nuts, beyond his dose. We’ll be there all day and they’ll do some blood tests, I believe. After that, my understanding is that he’ll be cleared to go into maintenance mode, which involves him having his daily 4 gram dose at any time without activity restrictions, and being able to eat anything (even products with nuts in them), beyond his dose. He won’t be declared ‘not allergic’ until some point down the road (after 3 and 6 month checks), when additional blood tests are done to confirm that his body has maintained its non-allergic state. Hard to believe all of that is happening already for him.

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I’ll end with a poignant moment from this past weekend. We took the kids to see the mountain play on top of Mt. Tam, and they were sitting in a crowded melee of children, watching a puppet show. As I stood in the back behind all the kids, I saw a mom hand the squirmy, hands-y girl that sat between Ari & Aviv a PB&J sandwich. My body started to recoil to fling me forward to block the PB&J or move our kids from the offending threat, when I stopped myself and remembered that it’s no longer a risk to my kids. I took a deep breath to help bring my blood pressure down from its protective mama grizzly level, and tried to capture that moment in my mind… that’s why we’re doing this… it’s so that they and we don’t have to worry that every nearby snack or library book or playground toy is a risk... so that they can be in a crowd of kids… so that they can lead normal lives. Last year at the mountain play was a different experience – wiping down the bus seats before letting the kids on, being wary of the many potentially scary picnics around us – and it was awe inspiring to think of how far we’ve come since this time, last summer. That’s the prize we’ll keep our eyes on in this home stretch.

Happy Father's Day

I want to take a break from sharing the ups and downs of this journey to recognize the guy who helps keep things on track during those ups and downs, and without whom we wouldn't be where we are today - on a lot of fronts! - but specifically, in this clinical trial: A&A's dad, Orr. 

From tracking down and interviewing doctors last year to learn what they knew about this type of treatment and setting up appointments for us with specialists in Portland and Tel Aviv; to serving on the SAFAR Community Council and taking an active role in the education outreach committee; to interrogating manufacturers about their facilities; to baking amazing food all these years for the boys so that they always had yummy challah, mind boggling birthday cakes and countless other treats to not feel left out; to training countless camp counselors and teachers on EPI pen use and protocols; to stretching the bounds of cooking chemistry to create beautiful, edible doses for the boys each week... he's an amazing father and husband, and I'm so grateful for the gifts of love, patience, creativity, tenacity and cooking that he's given to all of us.


To those of you dads (and moms, but it's not our day today...) out there who have been supporting your kids through the roller coaster of food allergies, a special shout out to you as well. This is hard, often frustrating work, but remember that what you are doing is the most important... you are giving your kids an amazing gift of love, safety and support, the impact of which is priceless. Happy Father's Day.

La Boulangerie should take note...

We experienced more joys this past week, such as getting an ice cream from the ice cream truck at the park on a hot afternoon, eating baked goods from a booth at a festival, and going to a new restaurant and ordering without interrogating the staff. We love the freedom of each of those things, and we took the opportunities to remind the boys of it… with as hard as the dosing is, it’s important that we tie it back to the rewards they’re able to see/experience.

The complexity of the dosing has increased along with the dose amount itself, as we need to split the dosage up even more throughout the day. (Every 2 weeks is a new puzzle!) It doesn’t help that Aviv has an ear infection right now, increasing the number of things he must ingest daily by adding antibiotics and probiotics to his new daily repertoire of 4 dose cookies, 1 container of hazelnut milk, 9 peanuts, and 2 Zyrtec (to manage his environmental allergies). Seriously – I wish a partridge would leave its pear tree and come over here, just to help us keep track of the litany of items.  As Orr experimented with new dose cookies last night – these ones color coded French macaroons – I developed a medicine chart for the boys where we can check off what has been given each day. While he spent 3 hours in the kitchen weighing, measuring, mixing and creating beautiful meringue (and countless hours prior, researching tips such as when making nut flour, add powdered sugar to nuts in the mixer to helps prevent it from turning sticky/into nut butter), and I developed their dose chart, wrote instructions for our nanny on how/when to give, and handled other aspects of the administration of A&A Incorporated, we got to talking about whether this is something we would recommend for future trials/treatment. That is, if asked, would we recommend that a child as young as 5 be allowed to treat 5 nuts simultaneously. Honestly, I don’t believe it is very doable under most circumstances. I think either part on its own could work… treat 5 allergens simultaneously (provided that at least two of those are high-in-protein-density/non-nut allergens), OR if 5 nuts are to be treated simultaneously, try to ensure that the subject is older, follows directions (even when it’s very hard), has support (especially around food preparation), and has strong stick-to-it-iveness. We have all possible things going for us (well, except for a 5 year old that follows directions well), and it’s been extremely challenging. I’m not sure what we would have done had Orr not been as experienced and creative a cook as he is. There is one family in the trial who told us that they just insist their kids eat their nuts plain - without any sugar or fanfare  – and we watched in awe one day as that occurred. To be fair, their kids are older than ours, only have a couple of nuts to treat, and aren’t as far along in the dosing as our kids, so the wheels may get wobbly on their bus too. Even if they’re able to keep it up, is it reasonable to expect a 5 year old to sit down and eat 102 nuts (Aviv’s final dosing amount) each day without throwing a fit? Maybe it just depends on the kid. I believe that if he had to, Ari would follow directions and eat however many nuts, in whatever form, we directed... he’s just a rule followin’, stoic kind of kid, G-d bless him, and it’s not about age; he would have done that at 5, too.

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So after all of that work last night, the boys came to the breakfast table this morning, saw their macaroons and started complaining… too big, too high, too flaky… it took a lot of restraint to not blow my top, after all the work that had gone into them. Ari ultimately sat and ate one without another word, but Aviv dragged his feet for the next 45 minutes, frustrating everyone. Splitting up the dose throughout the day has been incredibly helpful, but it does mean that breakfasts have effectively been replaced by dose cookies and that we often leave for work (and they for school) having already gone to battle. We now have situations that we always swore we would never let happen in our family, where we’re fighting over food. We decided early on with the kids that we wouldn’t force them to eat (“they’ll eat when they’re hungry… no kid that has healthy food available to them will starve”, our pediatrician told us long ago), as doing so sets up power struggles. Never say never, because here we are: the breakfast table is power struggle central.  The irony, of course, is that after the morning tactics wore us down, Aviv proceeded to eat the rest of his dose throughout the day without a fight. Hallelujah. Another day done, with a flurry of check marks on the medicine chart (& two exhausted parents) to prove it. 

“Is camper allergic to anything?” Sigh…

Tuesday’s updose went very smoothly, in large part due to Orr’s brilliant idea to split up the dosing, that is, to give the boys their usual (past two weeks) dose prior to getting to Stanford, and then just give them the additional (updose) portion there. I’m not sure that it’s standard protocol to do that, but we’ve had such a struggle with getting the whole dose into the boys in one sitting, that the SAFAR team gave us approval. That made a huge difference in the time and ease of our appointment. The boys are up to 11,200mg now each day of nuts (with no reactions!), and – if you can believe it – they only have one more updose appointment left! While there have been days (really, meals) that felt as if they dragged on forever, the truth is that this has gone incredibly fast. The plan is that they will have their final updose appointment on June 19^th, and then their big test day (“Week 24” – the final week, as it’s known in the protocol) will be all day on July 2^nd.

I spent some time with the SAFAR nutritionist exchanging tips on how to serve/deliver the nuts to make them more appealing. A few useful new tips were learned (including blanching walnuts and hazelnuts to remove their bitter skin, and that a defatted peanut flour exists commercially), and I shared with her the high nut/low flour cookie approach we’ve been using. She reminded me that we’re the furthest along in this (treating so many nuts simultaneously), so just as we’re learning from them, they’re learning from us. There was some surprise expressed at the fact that all the kids in the Xolair trial have been able to updose according to the hoped-for schedule, and especially that Aviv has been able to go so far in this at all… as the only person in the country doing 5 nuts at a time – and being only 5 years old, to boot – they apparently weren't sure if he really could. (Tell me about it, sister…)

The deflating moment of the appointment came when I asked my big Wishing Wall question, that is, are the boys considered allergic or not allergic for purposes of camp this summer and school next Fall. I was told that until they’re done with the study, they need to be considered allergic, with all the protocols that that brings with it. So for camp this summer, we need to maintain DEFCON 1 status (nut-free camps, reviewing snacks provided by the camp, training the counselors in how their reactions present, getting a letter out to the other parents, EPIs everywhere, etc.). I understand why, and know that I need to be patient… I just don’t wanna. : (  

I can even get my head around camp, as the boys’ testing (on July 2^nd) is after camp begins, but what about the coming school year? Do we need to start another school year with the boys carrying the ‘allergic kid’ label that gets in the way of them being invited over for play dates (among so many other things)? And if so, at DEFCON 1, or at a less scary-for-people level? I’ll revisit this topic with the SAFAR staff after we see the July 2^nd test results, but my current understanding is that they’ll go through a bunch of tests on that date (including being given amounts higher than the 4000mg/nut maintenance dose), and then if all looks good, the boys will be released to follow a maintenance regimen, and then come back 3 months later for blood tests to see if the body has maintained its resistance. I believe that only after those tests come back clean will they be considered not allergic. (I’m hedging as the protocol is a moving target, informed by other research and trials taking place around the country.) I intellectually understand why we need to maintain the safeguards until various rounds of testing prove that their bodies have really changed, and know that it is infinitely better to be safe than sorry. I just had in my head that they would be able to start the next school year without their labels, EPI-pens and signs in the classroom, and just need to revision the timeline. I still believe that the day will come when we ceremoniously take off the Medic ID bracelets and have ourselves a bring-your-favorite-nut-product party; it just looks like it might not be before the Fall semester of classes begins.  

Whining aside, let’s step back and wrap this on a high note: the protocol is working. The boys' last Xolair shot was a month ago, so the fact that they aren’t having reactions to their daily dose (and updoses) indicates that their bodies are really being desensitized and doing all the work; the Xolair isn’t there as a buffer anymore. That is an amazing result in such a short period of time, and in all of the tough or slightly disappointing moments, that is what we need to remember. We were at Aviv’s preschool graduation today – milestone! – and several of the parents were asking about how the clinical trial is going, and upon hearing, just hugged me and talked of how much of a relief this must be. I was overwhelmed by the reminder of how lucky we are to have been at schools with amazing teachers, parents and kids that have been so supportive of the boys and their needs all these years. Thank you to all of you. We are very blessed.

Disney, cookies and more

So much to share from the past few weeks!

We made it to Disneyland, which was a schizophrenic experience for me, as it felt as if I was on 2 different vacations. In the first, with Ari, everything was perfect… he drank all of the Magic Kingdom kool-aid and loved everything about the trip. He ate his dose in the morning before leaving the hotel, then with a prance in his step, spent the day being wowed by all things Mickey. It was amazing for all of us to feel free about touching the rides, eating things in the restaurants there, and boarding the plane together. Some habits die hard, though… As we sat down in the row, Ari looked at me nervously and asked if I had wiped everything down. When I told him I didn’t need to anymore, he asked me if I’d do it anyway. He felt better, and truth be told, so did I when I did a quick wipe down of the tray tables, seat belts and arm rests. I have no doubt that everything is working as it should with the boys’ building up their immune system, but being 30,000 feet up in a locked bubble with lots of nuts still feels like a situation that should be respected. However, I didn’t notify the crew or the passengers seated around us, nor place the EPI-pens in the seat pocket in front of me, as I’ve done for the past 5 years, which felt freeing, if a bit strange.

On the second vacation that I was simultaneously on, I spent half of the time in restrooms (as Aviv’s stomach virus lasted the entire time we were away, and then some) and fighting with Aviv to take his dose (which was more appalling to him than usual because he couldn’t keep any food or drink in his tummy), and the other half carrying him around Disneyland because he was too weak from vomiting, etc. to walk but didn’t want to miss out. Honestly, it was brutal. We were on the phone or email with the SAFAR team daily trying to figure out how to best handle the situation. He missed two days of doses, and they were getting concerned that he was going to adversely impact the work that had been done to date in building his desensitization. We had to try to get at least partial doses in him, despite the fact that he was weak and green, and the anxiety level started to rise as we worried about his ability to updose at the coming week’s appointment, or worse, jeopardize all the work he’d done so far. He cried, he screamed, he vomited… getting him to eat his dose wasn’t fun or pretty, and we didn’t have the benefit of being home with various options, toppings and devices to make the nuts more palatable. It was really gut wrenching and one of those times where we really had to sit back and ask ourselves what the right thing was to do; we knew we wanted to do the right thing, but felt torn about what that was. We ultimately decided that the right thing was to do everything we could to support him in this trial – even if it was hard in the moment and he told us how much he hated us for it - so we pushed ahead, bought a blender and toppings and ice cream and other items to make the nuts seem less terrible, took turns staying with him while he ate the dose (while the other parent took Ari to Disneyland), and slowly brought him back – first to a half dose, then ¾, then finally, back to full dose - by the time we returned home. It was grueling and he wasn’t the only one who shed tears. I’ll admit that we’re engaging in a bit of revisionist history with him now, reminding him only of the positive moments of our trip so that his memories and associations (both of Disneyland and of this dosing process) are as good as they can be.

We were incredibly relieved when the SAFAR team decided that Aviv had enough doses (or portions thereof) in the preceding two weeks without reactions to allow him to updose on May 22^nd. It wouldn’t be the end of the world if his updosing were slowed down, but we’d like to help him get to the end as soon as possible. They did updose without reaction (yay!), and we got some equivalents charts from the SAFAR staff that helps to broaden our repertoire of what other food items (with nuts in them) can be used as part of their dose, so we’ve been experimenting. Both kids love peanut M&M’s and Reece’s Pieces, it turns out, but not Reece’s Peanut Butter Cups. I’ve also found some hazelnut milk that we’ll try, along with other finds.

It wasn’t all roses, however, in that we also hit a few dead ends on support avenues we’d been pursuing. We were disappointed to hear from the company that had said they could de-fat nuts for us, that they did so, ran tests, and found the protein levels of the de-fatted product to still be very low. Effectively, that means there’s no point in using the de-fatted product; it won’t help us to be able to give them fewer nuts/smaller volume doses. (To be honest, we don’t understand how it still has the same protein density after de-fatting, but they re-ran their tests to confirm and their head person validated it, so there it is.)

Additionally, after hitting several dead ends trying to get a dietician/nutritionist to talk with us (as most found this situation too complicated), we met with one at UCSF who shared some useful information (namely, that the protein intake from their full dose is only about half of the protein that they need in a day, so we don’t need to cut out other proteins; and that a flour-free peanut butter cookie recipe exists). With that tip, Orr found the recipe and modified it to include all of their nuts together, resulting in a huge breakthrough: giving their dose split up in 3 nut-filled cookies throughout the day. This has worked very well, making the past week or so of doses MUCH easier. Damn, that feels good to say! We’re grateful that there are parts that are feeling easier. Making these cookies involves lots of scales, weighing and specificity to ensure equal and accurate doses, but Orr's doing  it. Splitting up the dose over the day has helped tremendously, as it doesn’t feel as overwhelming (for them or us) to have to do it all in one sitting. To do so means we’re replacing breakfast with a dose cookie, enlisting the help of our nanny to observe them after an afternoon cookie, and then giving them their final dose cookie at night when we’re home. It’s working well, and we’re hoping it will continue through the next updose.

Other bits of fun: another first – Baskin Robbins mint chocolate chip ice cream cake! Such a happy memory from my childhood that the boys’ didn’t even know they were missing. Friends brought one over this weekend and very pleased boys quickly added it to the Wishing Wall, and immediately added a check mark next to it. We also went to a carnival over Memorial Day, and again got to experience a sense of calm being in big, public gatherings that had previously eluded us. Finally, perhaps the best news of all from Dr. Nadeau, which is that she is carefully monitoring the other clinical trials around the country to see about reducing the post-graduation/maintenance dose from the full 4 grams/nut/day to something less. Although we’re not sure exactly what that would be, she is optimistic that we will be able to try a lower maintenance dose, which would be incredibly helpful.

One final note on our continued identity crisis of being in between the non-allergic and allergic worlds: I’ve been filling out summer camp paperwork for the kids this weekend, and am at a loss regarding how to fill out the section that asks about allergies and medications. For purposes of informing their camps, do they have food allergies or not? If yes, do we need to go through the same song and dance that we have in the past, which involves lots of pre-camp conversations, training camp counselors on proper EPI-pen use and what reaction symptoms to look for with our kids, reviewing the camp’s allergy safeguard protocols, laminating and posting A&A’s allergy action plans, checking ingredients labels for proposed snacks, and then talking with the other parents? Or can we just send our kids off to camp with a backpack and a kiss, and be done? I might have to add THAT to the Wishing Wall…