Bump in the road

I intentionally didn’t write last night, as I was trying to get my arms around the panic that started to well up inside of me. A full night’s sleep (we all collapsed upon our return home) and 24 hours of perspective helped, though I still have residual anxiety…

Yesterday we went to SAFAR for tests, 6 weeks after our last appointment. At this stage in the trial, we would normally return every 3 months, but at our last visit in January, Aviv’s skin test for pecan had some redness. He had previously tested negative to pecan, so a little redness – not necessarily a full ‘wheal’ or welt, but redness - was curious. We decided to keep a close eye on it by returning in 6 weeks. Despite the previous negative test, both boys have been including 3 pecans in their daily dose just in case. Remember, this is completely new territory here… no one had gone negative prior to this, so the data for what to do when it occurs just doesn’t exist.

Back to yesterday… I gave blood (for research purposes), both boys gave blood (with some yelling and screaming), and then the skin tests began. The cashew, pistachio, walnut and hazelnut for Aviv continued to show nothing – totally negative! Same for Ari with walnut. But the pecan on both boys (along with peanut, and hazelnut, respectively, which they haven’t yet gone negative for) appeared red, and more so than the redness we saw 6 weeks ago. What does that mean? I wish I knew. No one knows. Was it just redness (which can result from the mere prick during the skin test, and may not indicate any problems), or an actual wheal? As we learned early on in this journey, that's what it means to be in a trial... they're trying out different hypothesis and approaches, and we're along for the ride. There’s no definitive answer to my many questions of what to do next, what might help, could they lose their desensitization, is everything ok… As Dr. Nadeau reminded us today, we are on the edge of the research on this topic, and from what our medical team understands and knows from other trials, this should work. We’ve decided to increase their pecan intake to 7/day and come back in 6 weeks for more tests, but truth be told, my stomach is in knots. I know that both boys have been fully desensitized, and I know how much freer our lives are now. I also know that redness and possible wheals on skin tests where there previously were none isn’t what we want. Why the change? Do they need to have more pecans per day to keep up the status? Does this mean that their bodies can/will regress? The answers to these questions are not known, and that absence is making me crazy right now. Perhaps this isn’t a big deal, but we just don’t know. We’ve been so, so lucky that things have progressed smoothly until this point, and felt the miracle of the boys going negative to so many of their nuts so quickly – that wasn’t expected to happen (if it was to happen at all) for another year or two.  We’re hoping that this is just a minor detour… that we just need to up the pecan dose to get things back to heading the right direction, and be patient. Unfortunately, I’m not great at being patient, especially when the stakes are so high.

Pecan is on the bottom left for Ari

Pecan is on the upper right for Aviv

We’ve decided not to share with the boys what’s going on, as there are so many unknowns right now and we don’t want to worry them unnecessarily, especially when we don’t really know if this is something to be worried about. They are so proud of themselves for all the hard work they’ve put in and the amazing results they’ve achieved, and we don’t want to squash their excitement and pride.

Perspective is an interesting thing… Had the boys not gone negative over the past few months, we would have been over the moon about yesterday’s skin test results for pecan as they were so mild. We would have continued to be thrilled by the tangible results we experience every day, that is, that they eat these nuts with no reaction whatsoever. But now that we’ve gone further, it’s hard to feel like we might be slipping backwards. So I'm filled with hopes...  I’m hoping that this is just a minor bump in the road; that giving them more nuts will go smoothly so that we’re not back into the world of fighting over dose; that Orr & I do our best to bottle up our own unease so the boys don’t feel it; that in six weeks the skin tests show less-to-no redness for pecan; and that we find that we worried for nothing. Those are my hopes for tonight.