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.