Sneak peek

Another weekend of the kids indulging in all-you-can-eat breakfasts before diving into their doses; such a treat for them! Ari’s “week 24” is tomorrow, and I can’t believe we’re here so quickly.  I’m not nervous, as he has had such a smooth road through this trial, and because we accidently jumped the gun this week. Despite the development and deployment of my carefully thought through medicine chart to prevent mis-doses, we had one this week, and between the various grown-ups involved in administering Ari’s dose (and the constantly changing dose vehicles), he received a dose and a half on Thursday – 6000mg each of his 3 nuts. Ari didn’t have any reaction whatsoever – which is amazing! – but that didn’t keep us from freaking and calling the SAFAR team as soon as we realized what had occurred. They weren’t fazed, and we all laughed that we had a pretty good idea that tomorrow would go smoothly!  In addition to taking him to 8000mg of each nut tomorrow, they’ll also do blood tests and skin tests before sending him into maintenance mode.  Still so hard to believe.

Aviv will come along for a regular updose tomorrow, as he makes his way up to 4000mg per nut. They worked out the new/amended protocol, and the plan is for him to get to there with 3ish more updoses. He’s been handling the current dose really well, and the SAFAR team was right to not updose him two weeks ago; his body just needed to settle down, and it has. (The 1/4 of a pan of banana bread/day made of nuts and a few bananas seems to be working.) It’s likely that when he gets to his “Week 24” tests (which won’t, of course, be at week 24), that he will have a different experience than Ari. For kids being treated for more than 3 allergens, they’re realizing that trying to significantly increase (often, double) the final dose in one day/one sitting is not doable, so they’re considering breaking the testing into two days. We’ll learn more as the date nears.

Ari won’t be the only one having his blood drawn tomorrow. Orr and I were asked to participate in a study that is being done on the genetics of food allergies, wherein blood is being drawn from parents of kids who have food allergies, who do not have them themselves. I’m glad to know that such research is being done, and hope science provides some answers.

We heard from others in the trial this past week, and learned that – although we have felt that we were on our own during this trial in struggling with the doses and accompanying stresses - as other participants are progressing to higher dose amounts, many of them are struggling, too. The combination of the multi-allergen treatment (which hadn’t been done before, and increases the per-dose volume) combined with the rapid updosing (made possible by the Xolair) has made the treatment process much tougher than expected and that fact is coming through loud and clear as others march forward in the process. As hard as this journey has been, I wouldn’t trade it for the world… we went to the Marin County Fair this weekend, and the kids were able to go on all the rides (and meet Star Wars characters) with my only worry from their hands touching everything being the germs; the boys have been at camp which has been a near worry-free experience; we went to the movies last week and the kids got to have popcorn – another first for the Wishing Wall!; and we went to a Thai restaurant last night, previously avoided at all costs due to the prevalence of nuts in the cooking. Aviv noticed cashews in one of the dishes near him and we were able to talk about how he couldn’t have even been close to that dish previously, but here we were, eating at the same table with clear cross contamination. We were also at several events this weekend where many parents who have known our boys (and been so supportive of their allergies and keeping nut-safe environments for them) were present. They were stunned watching A&A eat their doses and seeing how easygoing we now are about them touching and eating things. There’s something so validating about having others who know you well notice the differences, and call out the progress.  So many first, and so many new life experiences that are now open to us.

Fingers crossed that everything goes as smoothly tomorrow as they did in the dress rehearsal on Thursday… : )