Crossroads

Despite the wonderful ‘firsts’ we’ve experienced, the amazing fact that the study is working (from a medical standpoint), and a commitment to try to focus on the positive, the lows that I’ve mentioned previously (around struggling with Aviv to eat his dose) are really taking a toll.

We head down to Stanford tomorrow for Aviv’s Week 24 (part 1), and for Ari’s 6 week check-in. This should be an exciting time for us, but instead we are spent emotionally from the daily struggle, and we feel like the adverse social and emotional impact on Aviv and our whole family from the daily arguments (and now hunger striking) over eating his dose are pushing us to a breaking point. Every day we are faced with the same dilemma – to allow Aviv to eat other/regular foods prior to eating his dose (which he wants, but we know fills him up), or to insist on dose first. The latter approach was unsatisfying but effective for a while. Lately, he’s taken to digging his heels in and refusing to eat. All types of coaxing, negotiating, prodding, convincing, bribing, etc. have been used, but he just repeats over and over "I can't do it", and begs to be let out of the study. As he sits looking at his dose, he vacillates from tears and sadness, to anger and lashing out. We can’t even spend time together as a family in the evenings when we come home from work, or on the weekends, without the dose arguments taking center stage, exhausting us mentally and resulting in negative, ‘unfun’ time together. Even with all of the machinations that yield minimal progress, he’s still not ingesting his full dose each day.  We believe that it's both the sheer volume each day (just looking at it, he tells us, makes his tummy hurt), and the fact that there's no end in sight for him (regarding when that volume might decrease) that is so defeating to him. He is starting to feel bad about himself (like he’s failing each day), and we're concerned about the emotional impact on him, as well as on our family dynamic. As I reread this, and recall the tears and declarations of “I can’t take this anymore; I’m done!” – both of which came from each of us at one point over the past few days – I can’t help but think we are crazy to want to continue, with the potential psychological impact this might be having. The flip side, of course, is that this is a once-in-a-lifetime opportunity to desensitize him to the health and safety threat that used to hang over our lives. How do we walk away from that, especially when we know it works (medically)? And if we did, in addition to the fact that Aviv (who was always the less cautious of the two) would revert back to reacting to nuts, causing us to go back to the anxiety and precautions that used to define our lives, how would that work logistically at our home, when Ari would HAVE to eat nuts in order to maintain his desensitization, and Aviv would go back to being allergic to those same nuts?

I refuse to go down without trying everything, especially after having come so far. Certainly, Orr has gone above and beyond in creating and baking nut-filled treats for their dose, but maybe there’s something we’re not thinking of, so we’ll to try to find a personal chef who is used to cooking for special diets. [If anyone has a great recommendation, please contact me.] Additionally, we’ve reached out to our amazing team of medical professionals for suggestions and wisdom and will re-contact the company we spoke with months ago about defatting the nuts; maybe they’ve figured out a better way to do it by now. We're going to be talking with the SAFAR team tomorrow to see what suggestions they might have for how to keep Aviv in the study and/or how to keep up the desensitization he worked so hard to achieve. Maybe there’s a way to modify? Perhaps a reduced maintenance dose, or drop one/some of the nuts?

So many questions; so few answers…

-How much of this is timing (maybe he’s just too young) or temperament (maybe he’s just too stubborn), or maybe it’s a straight numbers problem (too much volume for a body his size)?

-Is this really a once-in-a-lifetime opportunity? Do we need to push through because there might not be a second chance, or do we trust/hope that we can come back to this in the future when he’s older?

-Maybe we continue but pull back the throttle so that he either keeps having all five nuts, but at a lower level such that he’ll just be past the cross-contamination barrier, or maybe we drop some of the low-protein density nuts and continue ahead with the rest?

We just can't imagine walking away from this opportunity to clear him of his allergies, but he is getting run down and defeated emotionally, as are we, and we’re torn as to how to proceed.