Whack-a-mole, part 2

If there’s anything I’ve learned over the past 5 years it is to not underestimate Aviv. He’s like the sleeper cell that surprises you in ways you least expect. It turns out that he didn't have a cavity; his daily dose of nuts were getting caught up underneath his gums (where brushing and flossing weren't finding them), making every bite painful. A deep cleaning cleared up the pain, and we thought all was well. Whew! One crisis averted. (BTW: for those curious about the linkage between albuterol and tooth decay that I mentioned in my last post, there is a study that found such a linkage, but in it, patients were taking albuterol 2x/day or more, and the dry mouth that the albuterol causes was likely the main contributor to the tooth decay. Moral of the story: rinse your mouth after taking albuterol to clear it off your gums and wet your mouth.)

So with the tooth mystery solved, we packed for Disneyland… and then the sleeper cell awoke. And vomited. And vomited again. And again... Our minds swirled wondering what was happening with Aviv… reaction to the nuts? One of his other unusual medical issues? No. The good news is that he has an old fashioned, just-like-every-other-kid, stomach virus. Whew! My first reaction was that it feels good to have regular kid issues; my second reaction was wondering what to do about our next-day early morning flight to Disneyland; and my third reaction was to wonder about his dose. He couldn’t keep down water and toast, much less a big handful of nuts. We spent the past 24 hours calming a VERY disappointed Ari, nursing Aviv to a pretty stable place right now, pushing our flights to L.A. back (hopefully leaving tonight with a rehabilitated kid), and talking with the SAFAR staff. Aviv had to miss his dose yesterday, and due to fever and low appetite, he’ll have to miss his dose today as well. We were told that kids can miss three doses without too much of an impact, so we’re hoping he can have his dose tomorrow (maybe just a half, then move back to full the next day), so that his updosing schedule is not impacted. Being on the Xolair should give him some cushion in being able to ride this hiccup in the process, so we’re keeping fingers crossed. Boarding a plane together; dosing while traveling; and meeting Mickey – the three ‘firsts’ we hope to check off in the next 24 hours!

Whack-a-mole

First the good news: Doses are getting better! The dosage is high enough now that the boys are able to have nut butters, so we’ve been able to shake up the daily dosing a bit to include waffles with nut butters (another item checked off on the Wishing Wall!) & nut milkshakes, alongside our new old standbys of squashed-into-brownie, covered in chocolate, or dipped into Hershey’s Syrup (which is far from being actual chocolate). Being able to split up the doses on the weekends into two portions has helped, too. Cashew, walnut and peanut butter, and soon to be pecan butter, are all joining the ranks of our nut supplies, which we had to clear out shelves to house. (Another strange experience… after years of making people wash hands upon entering our house to rid themselves of any possible nut oils, now we have shelves of nuts… it feels bizarre every time I open the door to that cupboard and become enveloped in the nut smell.)

We’ve continued to be so touched by the generosity of people in our lives who have given of themselves, whether with advice (from friends & our medical team, even after hours), sharing of tips (blanched hazelnuts taste milder than roasted ones; refrigerating the nuts masks some of the oily consistency; etc.), and even sleeping over & coming down to Stanford with us when one of us is away on business so that we always have two adults around for doses. Most recently, two different companies went out of their way to help supply us with products to make the dosing easier. A special thanks to Greer, who agreed to test and manufacture de-fatted nuts for us, and to Berkeley-based Living Tree Community, whose CEO responded to our questions during late/weekend hours and is sending us hard-to-find pecan butter. You may wonder why we’re not just making our own nut butters… apparently carbs are often removed by manufacturers when they make the nut butters to increase shelf life/stability, which means that manufactured butters are more concentrated then we can make on our own.  

The other good (great!) news, that I realized I haven’t written much about, is that the boys aren’t having significant reactions to their doses. They may not like the taste or volume, but their bodies are tolerating the doses, demonstrating to us that the protocol is working and their bodies are building their immunity to the nuts. Of course, the rubber will really meet the road when the Xolair dissipates from their body, and we see that they continue to ingest without reactions. All indications though are positive, and we’re amazed at how minimal (if at all) their reactions are. This is amazing and what it’s really all about.

In the ‘whack-a-mole’ department: Aviv has a tooth that appears (to my pocket flashlight and lay person eye) to have decayed rapidly. He just received a report card with a gold star on it from his dentist 3 months ago, but he’s now experiencing pain while eating and we can see the tooth enamel having deteriorated considerably, potentially down to the nerve. After speaking to several dentists over the weekend – all of whom advised that we keep him off of any hard or sticky foods; oops – we’ll take him in for emergency dental work tomorrow morning; hopefully just a filling, but possibly what was described to me as a ‘baby root canal’. It feels a bit like we're solving one problem, but possibly creating another’... We don’t know for sure if this had anything to do with it, but there is some discussion online linking asthma (in particular, the albuterol/steroid medications that are given to manage asthma) and rapid tooth decay. Since the doses started two months ago, Aviv has been taking albuterol (which he previously had taken for infrequent asthma episodes) regularly and proactively, 1x-2x day, to provide an additional layer of breathing protection during the doses. Additionally, the amount of sugar he’s ingesting (as part of the doses) has skyrocketed since March. The fact that Aviv isn’t the poster child for great teeth brushing habits doesn’t help either, of course. If there is a connection, and we created one problem while fixing another, I would still take the trade: tooth decay is not good, but it isn’t life threatening. We’ll talk with our dentist tomorrow and see if she thinks there’s a connection, and what we can do to be more vigilant with his tooth care moving forward. In the meantime, we need to be creative in yet another way to get his daily dose into him. Never a dull moment!

I’ll end with one final bit of good news: as a special reward for the boys for hanging in there, following all directions, and generally being amazing sports during this process, we’re taking them to Disneyland for the first time! We leave Wednesday and are all very excited. While they are gearing up for Star Tours, fireworks, and other attractions, I’m absorbing the fact that this will be our first time of boarding a plane together (my turn to check something off on the Wishing Wall!) and going to a large scale, kid-filled environment where our anxiety level should be lower. Dr. Nadeau told me I didn’t need to pre-board to wipe down our seating area, or be nervous, anymore. I can’t promise the latter (although I’m getting better!), but look forward to boarding and sitting down like other families, without having to talk with crew and nearby passengers about the boys’ allergies. First, we need to get through a little dental work, and then Vive Mickey!

Free cone day!

It’s been a challenging couple of weeks since the past updose, but the clouds parted tonight and shone some light on the amazing new life we can/will have if we stay on track.

First, the past two weeks… the large nut dose has continued to be challenging to get the kids to ingest. Aviv fights us most nights, sometimes screaming at us, “I hate nuts! I hate this!” and some nights just dragging out the dose for 45 minutes, complaining the whole time. In contrast, Ari stoically crams it down (buried in chocolate pudding, hidden in banana bread, etc.), but said to me quietly a week ago, after his nightly dose, “I wish we didn’t have any more updoses. I really don’t like the dose, but I’m trying not to complain.” That followed his frustration a few days earlier, when he announced, “I can’t handle it!”  I admitted to him that there were moments that I thought the same, but then I reminded myself – and them - that we don’t have a choice… we won’t get a chance [to desensitize] like this again, so this is our only shot at changing our lives, ridding our family of these allergies, and we’re going to figure out how to do it. Plain and simple; we will not get a second chance, so no is not an option. Failing to figure out creative solutions to address the logistical challenges is also not an option, in my opinion, so we’ve stretched our brains (and the boundaries of the study’s protocol) to make things more manageable. For example, on the weekends, when we were around to watch them, we split the dose into two parts – one in the AM, and one in the PM. This helped a lot, and we’re considering exploring flex schedules during the summer (as their dose volume increases), wherein one of us would dose them in the morning (with half the dose) and go into work late (after watching them for 2 hours, then dropping them at camp), and the other parent would come home early to give the second half of the dose in the early evening. We’ve also been experimenting with different vehicles to hide the nuts in (brownies, banana bread, etc.) or dip them in (soy butter, chocolate syrup, Magic Shell, etc.) For those of you who know me well and know my usual hard line stance on sweets, you’d be shocked by the amount of chocolate I’m freely letting them have to use to mask the taste of the nuts; ‘anything to get the nuts in’ is my motto these days.

The most creative solution we’re exploring, however, has been ‘defatted nuts’ – nuts (or nut powder) that has had the fat and/or carbs extracted from them, in order to decrease the volume that needs to be ingested. It’s the nut protein that the boys need to get 4 grams of (per nut); for nuts like pecans and walnuts that are so low in protein density, the volume they need to eat to achieve the grams of protein is so high because those nuts are filled with unnecessary grams of fat and carbs. Finding ‘defatted’ nuts solves the volume (and health) problem that we’re facing. The only problem has been that such a product isn’t readily available. Note that I didn’t say impossible; just not readily available. Remember how this whole journey started, with us learning that a solution (this study) existed, and us doing everything we could to make it happen? The same thing happened this past week, when Orr went on a quest to track down information on this type of product. After following a number of leads that didn’t take him far, he found an upcoming allergy desensitization trial in Arkansas that will be using walnut protein powder. Calls to them put him in touch with the manufacturer of the protein powder, who – after a mere 10 or so calls – agreed to make (for us!) defatted nut proteins. They are currently creating the product and running tests on it that we can share with Dr. Nadeau; if it all looks good to her, we’ll be able to get and use that for the toughest nuts.

So amidst the stress of the past two weeks (how has it only been two weeks?!) of worrying that our kids weren’t going to be able to logistically meet the daily ingestion requirements (thereby jeopardizing their desensitization), have also come some amazing wins… finding solutions to the volume issue and checking off more items on the Wishing Wall: going to a birthday party and eating anything they want (Happy Birthday Elle! Eating your birthday cake made it a milestone b-day for us, too!) and going to an event at the JCC and being able to eat the food there.

Today was another big success. Today was an updose day, and all four of us were dreading it and the increase in nuts that it would bring, but it actually went very smoothly. Today was the boys’ last Xolair shot; from now on, it will be their bodies protecting themselves against their allergies, not the medication. We said goodbye to our friend the Buzzy Bee, and then dug into the new dose of 7600mg, buried deep in chocolate cupcake. 

Another family in the Xolair trial was there with their two kids, so we parents exchanged tips on which nuts were better/easier to eat, how to serve them, etc., and let the kids all talk with each other, hoping they all drew some strength from meeting other kids going through the same thing they are. Ari (surprisingly) had a very small reaction post-updose, but not enough to impact his taking the full 7600mg for the next few weeks. We also learned that Ari will probably only have two more updose appointments (Aviv will likely have one additional) before they’ll be tested and (hopefully) graduate. That graduation – in July, if everything stays on schedule - is coming up so soon and is hard to believe.

The real win today, though, came after we left the hospital. We decided to go have dinner in town, picked a restaurant from our GPS’s restaurant recommendation list… and just went. That’s it. No vetting, reviewing the menu ahead of time for safe foods, talking with the chef, wiping down the table, etc… we just went, sat down, and ordered… nothing special; just the regular food off the menu. Aviv even got to have the bread that they brought to the table, as he’s begged to do for years. We finished, left the restaurant, then had the kind of hour that I’m sure many of you have had before, but we haven’t… we just meandered around the open square in downtown Palo Alto, enjoying the sunshine, listening to live music playing, watching Aviv join the musicians and play the maracas that they handed him, and then saw a sign for ‘free cone day’ at the neighboring Haagen Dazs, SO WE WENT. We all got to pick any flavor (still confusing for the kids to have so many choices, but they’re learning) and eat the cones; the boys were ecstatic. As we sat in the open square listening to music, cones in hand, sun in our faces, we basked in the sheer joy of the spontaneity and weightlessness that we were able to experience tonight. No packed cooler bag and limits around where we could go; no uber-anxiety as the kids played and experienced/touched life… just spontaneous enjoyment. No is not an option, and moments like these will continue to motivate us.