Two down - confirmed!

We were still trying to get our heads around Aviv's skin test results from yesterday, and were dying to know if there was any way we could decrease his maintenance dose, so we spoke with Dr. Nadeau today. She checked Aviv's blood test from yesterday and confirmed for us that both his skin and blood test showed him negative for walnuts and hazelnuts. Not desensitized, but actually negative... NOT ALLERGIC.  We had to ask for confirmation because it seemed surreal. She told us that she had hoped that the study participants would eventually go negative to their allergens (beyond just reaching desensitization, which is when the allergy is technically still there, but the body has been desensitized to having reactions), but that she didn't expect that to occur until months later in the maintenance portion of the study. Aviv is the first one in the study to go negative to any of his allergens, and we're all stunned by the fact that it occurred, and that it occurred so quickly. As I've said about so many things in this journey: hard to believe. This fact means many things...

First and dearest to our hearts, it means that he doesn't need to have a 4gram maintenance dose for those two nuts. WOOHOO! She recommends having at least one of each of those nuts per day, just to keep it in his system, but we can pull out the rest of the walnuts and hazelnuts from his daily dose, resulting in a 30+ nuts/day decrease. That's almost a third of his 96 nut dose that we can say good riddance to! Not a moment too soon.

Second, it means that this is really, really working for Aviv. A negative skin test means that there are no cells left in his body that carry the allergy. His body is capable of making a true change, which motivates all of us (Aviv included) to stick it out with the other nuts. Since he went negative with these two, and there was huge improvement in his skin test with the other nuts, there's no reason to think that he couldn't eventually go negative with the rest. All of a sudden, what we previously thought of as a life sentence to eat 20grams of nut protein/day has turned into a more temporary directive that can improve with steadfastness. There is a real end in sight.

Third, this is not only life changing for us, but an amazing step forward for medical research in this growing-more-prevalent-by-the-day area of food allergies.

Dr. Nadeau didn't agree to decrease his maintenance dose as to the other three nuts at this point, as doing so would take him out of the FDA-approved protocol, and also she said the spartan data that exists in this area does not support it. Said another way, the data shows that dropping the maintenance dose from 4grams prior to truly going negative may result in a reoccurence of the sensitization to the allergens; the body will forget what it's learned, and we'll be back to reaction risk. In one of the only published studies with relevant data (the recent egg desensitization study at Duke), of the 23 patients who were desensitized to their egg allergy that ate a maintenance dose of 2grams/day, only 70% were still desensitized after one year. On the other hand, of patients (in other studies) who desensitized to their allergens and maintained a daily dose of 4grams, 100% were still desensitized after one year. 100%. Can't beat those numbers. To be fair, we're comparing apples to oranges a bit, in that none of those studies involved the treatment of multiple allergens, nor did any of those use Xolair (as the one that A&A are in did), and no one knows yet how either of those factors contribute to the observations. We're looking at the most relevant data that exists, but there isn't a lot. Ari and Aviv (especially Aviv!) are contributing to the data pool for this body of research in important, cutting edge ways. So while we can't decrease the dose for the other three, being able to remove two from the equation is huge, and we're hoping it will make enough of a difference for Aviv to make it sustainable. As he continues forward with maintenance, he'll periodically have skin tests, and his daily dose can decrease again when he tests negative for one or more of the other nuts.

Both boys are very excited about this major milestone, and Aviv is thrilled that he will have less dose to deal with each day. He was also so proud this morning when he spoke with Dr. Nadeau and she congratulated and encouraged him. Getting to eat whatever he wants pose-dose each day also helps; tonight he decorated animal crackers and couldn't have been happier. I have to be honest... on Monday night, when we felt so defeated and unsure if the right thing was to push on with the maintenance dose despite the emotional impacts on our family, I called on powers bigger than me. Just give me a sign about what we should do here, I whispered. I got my sign loud and clear - 2 nuts down, and 6 more to go for A&A. We see a light at the end of the tunnel, and we're going to move full speed ahead toward it.

Aviv’s Graduation Day

Two very different posts from me within 24 hours... First, the celebratory one: Aviv graduated today!

In keeping with his personality (always making sure to keep us on our toes), Aviv went in today for what was to be part 1 of 2 appointments that, collectively, would amount to his ‘Week 24’ tests and graduation. Despite being a little sick (and weak/tired from his recent hunger strike), he finished everything he needed to do, such that we won’t need a second Week 24 appointment. Due to the number of allergens being treated (and the challenges he’s having with ingesting), the SAFAR team required only 4 grams per nut (instead of Ari’s 6), which felt like a miracle, and it took a steady stream of bites (and moral support) between 9am through 3pm, but he did it. We even have the ‘Congratulations!’ letter to prove it. He is now officially desensitized, and moves into maintenance mode.

Perhaps even more surprising to us than the fact that he finished the full test dose today for all 5 nuts were the results of his skin test. He did today what he will do at each of his follow-up appointments, which is a blood test and a skin test. When we started on this journey a year ago, he did the same two tests, and his skin test then resulted in a sea of big red splotches all over his back. We watched today as the test was given, and waited for the splotchy sea to emerge again, but it did not. The reactions that he had today were so minor, that we were sure there had been a mistake. He was tested for the five nuts he’s been treating, plus pistachio. I don’t talk about pistachio much, but he is/was allergic to that one too; however the FDA has not cleared pistachio for this or any of the other oral immunotherapy studies (due to an absence of pure pistachios), so we were keeping our fingers crossed that Aviv’s treatment of cashew (which is, genetically speaking, a sibling of pistachio) would result in a ‘bonus’ treatment of the pistachio. Not only were his skin reactions to pecan, peanut and cashew mild, but he had NO reaction whatsoever to walnut or hazelnut, and only a very mild reaction to pistachio. Had I not watched the entire testing process myself, I wouldn’t have believed it. Frankly, even Ari’s skin test reaction was stronger to pecan, walnut and hazelnut than Aviv’s was. (Ari’s skin test stayed about the same as we saw at his test 6 weeks ago.) 

Finally Aviv catches a break! I feel like he gets the short end of the stick so often when it comes to his health, but this time he pulled the golden ring. We’ve been told that the skin tests often reveal false positives, as the skin reacts more easily or quickly, so we should expect that the skin reactions would be the last to disappear during this process. Seeing Aviv’s skin test results today were so motivating… there it was, in red and beige: the facts. This study, as hard as it is every day for him, has absolutely changed his body, his overall risk profile, and his life.

Now to address the second post (“Crossroads” from last night, but which, for those of you who receive this blog via email, you’re receiving at the same time as this one due to a technology glitch)… nothing in that post has changed. We are still struggling with how to proceed, as we’re very concerned about the adverse emotional/psychological impact on our family that the daily struggle to get Aviv to ingest his dose produces. The new information for us is how well the treatment has worked medically and physiologically, and that’s very inspiring for us; it’s still hard for Aviv to grasp, though, and as a result doesn’t help motivate him. We celebrated him tonight in the way that can motivate a 5 year old – any food he wanted to eat, presents, accolades, time together playing  – with promises of more of the same each evening (especially the free range on food) for any day that he finishes his dose early. If it’s done by the time we come home, he can have a free-for-all in the pantry and we can spend the evening doing whatever he wants – playing games, snuggling, even watching TV (normally off limits, but we’ll do whatever it takes at this point to incentivize him). Hopefully this will help as we continue to explore alternate ways to help him succeed in sustaining maintenance mode.

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So here we are… both boys graduating the study, eating tons of nuts each day with no reactions whatsoever, in maintenance mode, having such different experiences. A year ago, I couldn’t have imagined any of those things. When we started this journey, we worried about the physical reactions that might occur along the way. We even considered that there would be a mental shift we’d all need to go through to feel comfortable feeding them (and for them, eating) the items that were previously dangerous for them. It never occurred to us, however, to worry about the ongoing emotional weight associated with the dose. How could it? No one was doing multi-allergen trials for us to learn from, and we were so mesmerized by the idea of removing this risk and burden from all of our lives, that we figured we’d handle anything that emerged. We’d power through in the same way we’ve handled other things in life… sheer will and determination. The thing is, our will and determination can only take things so far; when positioned up against the sheer will (think Star Warsesque Force) of a very headstrong, clever kiddo, it’s hard to say who will win or what winning even looks like.

Over the next few days, we’ll have a chance to absorb more about what all of this means and decide how to proceed. For now, I’m going to crawl to bed and revel in the fact that both boys did it. It's so amazing what has occurred here, and we are so grateful to have been a part of it. A year ago, we were anxious about every library book and piece of playground equipment that could have invisible nut oils lurking on them. We read every label and were limited in where we could go, what we could eat, and what aspects of life we could participate in. Now – with the [large] exception of the daily dose requirement – we are free to go anywhere, eat anything and do anything. Just a few days ago, at a party where we told people about the boys’ new status, several of them invited us over for a meal, telling me that they’ve wanted to for a while, but didn’t know how to make things safe, so didn’t want to take chances; they were thrilled that they didn’t need to worry about that anymore. That’s the life we dreamed about… not needing to worry about invisible food-related dangers anymore. Miraculously, thankfully, we’re there. Now we just need to figure out how to help Aviv stay there...

Crossroads

Despite the wonderful ‘firsts’ we’ve experienced, the amazing fact that the study is working (from a medical standpoint), and a commitment to try to focus on the positive, the lows that I’ve mentioned previously (around struggling with Aviv to eat his dose) are really taking a toll.

We head down to Stanford tomorrow for Aviv’s Week 24 (part 1), and for Ari’s 6 week check-in. This should be an exciting time for us, but instead we are spent emotionally from the daily struggle, and we feel like the adverse social and emotional impact on Aviv and our whole family from the daily arguments (and now hunger striking) over eating his dose are pushing us to a breaking point. Every day we are faced with the same dilemma – to allow Aviv to eat other/regular foods prior to eating his dose (which he wants, but we know fills him up), or to insist on dose first. The latter approach was unsatisfying but effective for a while. Lately, he’s taken to digging his heels in and refusing to eat. All types of coaxing, negotiating, prodding, convincing, bribing, etc. have been used, but he just repeats over and over "I can't do it", and begs to be let out of the study. As he sits looking at his dose, he vacillates from tears and sadness, to anger and lashing out. We can’t even spend time together as a family in the evenings when we come home from work, or on the weekends, without the dose arguments taking center stage, exhausting us mentally and resulting in negative, ‘unfun’ time together. Even with all of the machinations that yield minimal progress, he’s still not ingesting his full dose each day.  We believe that it's both the sheer volume each day (just looking at it, he tells us, makes his tummy hurt), and the fact that there's no end in sight for him (regarding when that volume might decrease) that is so defeating to him. He is starting to feel bad about himself (like he’s failing each day), and we're concerned about the emotional impact on him, as well as on our family dynamic. As I reread this, and recall the tears and declarations of “I can’t take this anymore; I’m done!” – both of which came from each of us at one point over the past few days – I can’t help but think we are crazy to want to continue, with the potential psychological impact this might be having. The flip side, of course, is that this is a once-in-a-lifetime opportunity to desensitize him to the health and safety threat that used to hang over our lives. How do we walk away from that, especially when we know it works (medically)? And if we did, in addition to the fact that Aviv (who was always the less cautious of the two) would revert back to reacting to nuts, causing us to go back to the anxiety and precautions that used to define our lives, how would that work logistically at our home, when Ari would HAVE to eat nuts in order to maintain his desensitization, and Aviv would go back to being allergic to those same nuts?

I refuse to go down without trying everything, especially after having come so far. Certainly, Orr has gone above and beyond in creating and baking nut-filled treats for their dose, but maybe there’s something we’re not thinking of, so we’ll to try to find a personal chef who is used to cooking for special diets. [If anyone has a great recommendation, please contact me.] Additionally, we’ve reached out to our amazing team of medical professionals for suggestions and wisdom and will re-contact the company we spoke with months ago about defatting the nuts; maybe they’ve figured out a better way to do it by now. We're going to be talking with the SAFAR team tomorrow to see what suggestions they might have for how to keep Aviv in the study and/or how to keep up the desensitization he worked so hard to achieve. Maybe there’s a way to modify? Perhaps a reduced maintenance dose, or drop one/some of the nuts?

So many questions; so few answers…

-How much of this is timing (maybe he’s just too young) or temperament (maybe he’s just too stubborn), or maybe it’s a straight numbers problem (too much volume for a body his size)?

-Is this really a once-in-a-lifetime opportunity? Do we need to push through because there might not be a second chance, or do we trust/hope that we can come back to this in the future when he’s older?

-Maybe we continue but pull back the throttle so that he either keeps having all five nuts, but at a lower level such that he’ll just be past the cross-contamination barrier, or maybe we drop some of the low-protein density nuts and continue ahead with the rest?

We just can't imagine walking away from this opportunity to clear him of his allergies, but he is getting run down and defeated emotionally, as are we, and we’re torn as to how to proceed. 

4000mg for everyone!

Aviv’s final updose went very smoothly, as has the past week. His body is tolerating the full maintenance dose of 4000mg/nut (20g of nut protein total) without any problem – woohoo! I did the math this week, and it takes 173g of his combination of nuts (about 1.25 cups of nuts) to get to 20g of nut protein/day. I often write about his emotional struggle with his dose, but we shouldn’t lose sight of the biggest news, which is that his body isn’t rejecting it… he’s had virtually no reactions in months, despite eating over 100 nuts/day now. Ari, too, is sailing along smoothly with his maintenance dose with no reactions and no issues. These are mindblowing facts and a testament to modern medicine and research.

We had some great moments again this week, such as going out for spontaneous dinner and ice cream (with cone and toppings!) after they finished their dose on Sunday. My previous parenting approach of no/minimal sweets has gone completely out the window as I want to incent them to eat their dose early in the day to avoid the end of day fights. Instead, I’ve adopted the ‘you get to eat [almost] whatever you want if you finish your dose early without arguments’ approach, and have found it to be very helpful in bringing some serenity back to our lives. We were never parents who fought over eating or bribed with food, but tough times call for tough measures, and maintaining the daily dose definitely qualifies as tough times.  (His meltdown on Saturday, tears streaming down his face, shouting, “I don’t want to be in the study anymore! I hate my dose!” solidified that.)  My favorite moment of the week, though, is when Aviv and I were walking past his Kindergarten classroom that still had the sign up on the door from last year that read “This is a nut-free classroom”. We stopped and talked about how his class won’t need to be nut-free next year because of all of his hard work in taking his dose. He enjoyed wagging his “oh no you don’t!” finger at the sign, and felt good about letting it know who the boss is now.

I had a bittersweet ‘aha’ moment this week. In laying out for Aviv the ‘pros’ of staying on track and eating his dose, I mentioned a number of activities that he could now do… go on play dates and sleep overs, eat whatever birthday treat is served at school, etc. He wasn’t impressed, telling me that those were all things he was already able to do. I realized that he believed that to be true because we had always worked hard to make sure he and Ari didn’t feel bad about their allergies, or that their allergies prevented them from living their lives. Most play dates occurred at our house or at a park (a limited number of families felt comfortable having the boys over), and their preschool didn’t allow families to bring in birthday treats from home. We brought great looking /great tasting cake to parties and avoided places where the majority of things were off limits, so as to shelter them from disappointment. Apparently we did a good job of sheltering (which I’m glad about), as Aviv didn’t feel there were substantive limitations in his life that warranted the daily dose ingestion. Had they felt the disappointment more all along, the daily dose ingestion might feel worth it to him. Ahh, the irony never stops around here!

Aviv continues to try new combinations to break the dose monotony. Pita-chips-on-dose seems to have bypassed chicken-strip-on-dose as the favorite concoction of the week; I don’t care if he piles dirt on top if it helps him eat it. He is on track toward his ‘week 24’, which will be different than Ari’s. The SAFAR team had to adapt the week 24 protocol (which was to test all the treated allergens by doubling the dose on one day) for the participants who are treating more allergens. As hard as it is that Aviv has to eat 20g of nut protein/day, it would truly be impossible for him to eat 40g in one day. Instead, his week 24 testing will be split into 2 days (a week apart, to give his body time to recover from the first day), wherein they’ll test 3 nuts at 6g/nut on one day, and the other 2 nuts at 6g/nut on the second day. He’ll also need to have his maintenance dose of the non-tested nuts for each of those days, which will amount to 26g of total nut protein on one day, and 24g on the other, plus blood and skin tests. Also, for 24 hours prior to any testing or updosing, kids need to be off of antihistamines (so we can see the body’s true, unsuppressed reaction). Aviv takes a fair amount of meds to manage his environmental allergies that need to be stopped prior to these week 24 days, the stopping of which makes him uncomfortable (itchy and congested) and cranky. No, I’m not expecting either of those days to be fun for anyone. August 21^st and 31^st are the upcoming party days; think good thoughts for us!

Being free

Tomorrow Aviv and I head down to Stanford for his final updose – 4000mg of nut protein, per nut; 20g total. Final updose?! Can’t believe it. And let me tell you… 20g of nut protein is A LOT of nuts. As amazing as the dose treats are that Orr creates to help disguise all of those nuts for Aviv, it is still an overwhelming amount to ingest. I tried some this week, and while it wasn’t terrible, three bites essentially replaced dinner for me.

It was another roller coaster week; it feels like there isn’t any other kind, at this point. The low was low. Daily arguments with Aviv over eating his dose, including one evening (it’s always the evening when the fur flies, as the clock is ticking down for the day and whatever is left of his dose still needs to be eaten) when he sat defeated in front of a plate full of dose, tears running down his face, screaming, “I. CAN’T. DO. IT! I just want to finish this plate and be free!” Ouch. Punch in the gut. Be free?! Isn’t that why we’re doing this? To be free to eat anything, touch anything, go anywhere and experience life… It made me sad that he has still not internalized that connection. Ari has, which is what motivates him to finish his dose every day. Ari told me he does it, without arguing, because he knows that, once he’s done, he can eat anything he wants for the rest of the day. We couldn’t help but notice the irony the other day when we were at a party and Aviv was restricted from eating the foods there not because of allergy fears, but because we couldn’t let him fill up with other foods until he finished his dose. So much for bring free to eat whatever, whenever.

To offset, there were highs that were stratospheric.  We met with the boys’ school this week to share the good news that we didn’t need any accommodations for the coming school year; they – and we - were thrilled! The days of a nut-free classroom, restrictions on what others could bring to eat, and protocols around hand/supply wiping that had been in place, keeping them safe but causing anxiety for others, were finally over. They are just going to be regular kids, going to a regular class, riding the school bus that the bus driver no longer needs to decontaminate the seats on each morning, and being able to go on play dates without a lengthy prologue. [Aviv may still be restricted from eating actual nuts outside of his dose, but that hardly feels like a restriction for us.] Upon sharing the news, the first question from one of their classmates’ parents was, “Does that mean XX can finally bring a peanut butter sandwich to school?” We apologize for the deprivation; Ari & Aviv will no longer stand in the way of your child’s PB&J. : )   In all seriousness, we feel so grateful to have been at such supportive schools (with incredibly understanding teachers and families) that took the boys’ allergies seriously when they were so sensitive, and put in place protocols and built awareness that enabled us to feel safe when our boys were out of our site. Thank you Southern Marin Jewish Community Preschool and Brandeis Hillel Day School for giving us the greatest gift of peace of mind.

One last note before I turn to pack our standard updose trip bag of extra meds (I’m like a mobile pharmacy), books, games, movies to watch, headphones, updose amount, bulging medical file and notebook, and snacks (incentive treats for Aviv, and regular snacks for me… we’re there for many hours!). Orr started a new job today that we’re all excited about, but will require him to travel quite a bit. The downside to A&A having dose treats (instead of just giving them a bag of nuts at the beginning of the day, and telling them to eat it) is that someone who really knows a lot about baking needs to make those treats, and that isn’t me. 

To tide us over while he’s away, Orr turned our kitchen into a bakery this weekend with different dose treats for each kid and batches with different dosages for Aviv (pre-updose, and post-updose). At this point, Orr bakes a new batch of treats every four days for the boys. My vision is that once they’re both in maintenance mode (where the dosage won’t change every 2 weeks), Orr can make a bunch of treats that we’ll freeze (banana bread, macaroons, cookies, etc.), and then the boys can pick and choose each day. Hopefully that will cut down on the commercial kitchen feeling we have around here, and relieve some of the monotony for the kids. While Ari seems fine with eating the same food all day, every day, Aviv needs to mix it up, so he’s recently started adding other tastes he likes to his dose bites (i.e. a bit of X on the spoon with the dose). His favorite concoction so far is mixing chicken strips with his dose banana bread. If your stomach just churned, I’m with ya. He loved it though, and I’m willing to let him have just about anything with his bites if it will help them to go down faster and easier. Maybe that’s the new form of being free…