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.