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!