Disney, cookies and more

So much to share from the past few weeks!

We made it to Disneyland, which was a schizophrenic experience for me, as it felt as if I was on 2 different vacations. In the first, with Ari, everything was perfect… he drank all of the Magic Kingdom kool-aid and loved everything about the trip. He ate his dose in the morning before leaving the hotel, then with a prance in his step, spent the day being wowed by all things Mickey. It was amazing for all of us to feel free about touching the rides, eating things in the restaurants there, and boarding the plane together. Some habits die hard, though… As we sat down in the row, Ari looked at me nervously and asked if I had wiped everything down. When I told him I didn’t need to anymore, he asked me if I’d do it anyway. He felt better, and truth be told, so did I when I did a quick wipe down of the tray tables, seat belts and arm rests. I have no doubt that everything is working as it should with the boys’ building up their immune system, but being 30,000 feet up in a locked bubble with lots of nuts still feels like a situation that should be respected. However, I didn’t notify the crew or the passengers seated around us, nor place the EPI-pens in the seat pocket in front of me, as I’ve done for the past 5 years, which felt freeing, if a bit strange.

On the second vacation that I was simultaneously on, I spent half of the time in restrooms (as Aviv’s stomach virus lasted the entire time we were away, and then some) and fighting with Aviv to take his dose (which was more appalling to him than usual because he couldn’t keep any food or drink in his tummy), and the other half carrying him around Disneyland because he was too weak from vomiting, etc. to walk but didn’t want to miss out. Honestly, it was brutal. We were on the phone or email with the SAFAR team daily trying to figure out how to best handle the situation. He missed two days of doses, and they were getting concerned that he was going to adversely impact the work that had been done to date in building his desensitization. We had to try to get at least partial doses in him, despite the fact that he was weak and green, and the anxiety level started to rise as we worried about his ability to updose at the coming week’s appointment, or worse, jeopardize all the work he’d done so far. He cried, he screamed, he vomited… getting him to eat his dose wasn’t fun or pretty, and we didn’t have the benefit of being home with various options, toppings and devices to make the nuts more palatable. It was really gut wrenching and one of those times where we really had to sit back and ask ourselves what the right thing was to do; we knew we wanted to do the right thing, but felt torn about what that was. We ultimately decided that the right thing was to do everything we could to support him in this trial – even if it was hard in the moment and he told us how much he hated us for it - so we pushed ahead, bought a blender and toppings and ice cream and other items to make the nuts seem less terrible, took turns staying with him while he ate the dose (while the other parent took Ari to Disneyland), and slowly brought him back – first to a half dose, then ¾, then finally, back to full dose - by the time we returned home. It was grueling and he wasn’t the only one who shed tears. I’ll admit that we’re engaging in a bit of revisionist history with him now, reminding him only of the positive moments of our trip so that his memories and associations (both of Disneyland and of this dosing process) are as good as they can be.

We were incredibly relieved when the SAFAR team decided that Aviv had enough doses (or portions thereof) in the preceding two weeks without reactions to allow him to updose on May 22^nd. It wouldn’t be the end of the world if his updosing were slowed down, but we’d like to help him get to the end as soon as possible. They did updose without reaction (yay!), and we got some equivalents charts from the SAFAR staff that helps to broaden our repertoire of what other food items (with nuts in them) can be used as part of their dose, so we’ve been experimenting. Both kids love peanut M&M’s and Reece’s Pieces, it turns out, but not Reece’s Peanut Butter Cups. I’ve also found some hazelnut milk that we’ll try, along with other finds.

It wasn’t all roses, however, in that we also hit a few dead ends on support avenues we’d been pursuing. We were disappointed to hear from the company that had said they could de-fat nuts for us, that they did so, ran tests, and found the protein levels of the de-fatted product to still be very low. Effectively, that means there’s no point in using the de-fatted product; it won’t help us to be able to give them fewer nuts/smaller volume doses. (To be honest, we don’t understand how it still has the same protein density after de-fatting, but they re-ran their tests to confirm and their head person validated it, so there it is.)

Additionally, after hitting several dead ends trying to get a dietician/nutritionist to talk with us (as most found this situation too complicated), we met with one at UCSF who shared some useful information (namely, that the protein intake from their full dose is only about half of the protein that they need in a day, so we don’t need to cut out other proteins; and that a flour-free peanut butter cookie recipe exists). With that tip, Orr found the recipe and modified it to include all of their nuts together, resulting in a huge breakthrough: giving their dose split up in 3 nut-filled cookies throughout the day. This has worked very well, making the past week or so of doses MUCH easier. Damn, that feels good to say! We’re grateful that there are parts that are feeling easier. Making these cookies involves lots of scales, weighing and specificity to ensure equal and accurate doses, but Orr's doing  it. Splitting up the dose over the day has helped tremendously, as it doesn’t feel as overwhelming (for them or us) to have to do it all in one sitting. To do so means we’re replacing breakfast with a dose cookie, enlisting the help of our nanny to observe them after an afternoon cookie, and then giving them their final dose cookie at night when we’re home. It’s working well, and we’re hoping it will continue through the next updose.

Other bits of fun: another first – Baskin Robbins mint chocolate chip ice cream cake! Such a happy memory from my childhood that the boys’ didn’t even know they were missing. Friends brought one over this weekend and very pleased boys quickly added it to the Wishing Wall, and immediately added a check mark next to it. We also went to a carnival over Memorial Day, and again got to experience a sense of calm being in big, public gatherings that had previously eluded us. Finally, perhaps the best news of all from Dr. Nadeau, which is that she is carefully monitoring the other clinical trials around the country to see about reducing the post-graduation/maintenance dose from the full 4 grams/nut/day to something less. Although we’re not sure exactly what that would be, she is optimistic that we will be able to try a lower maintenance dose, which would be incredibly helpful.

One final note on our continued identity crisis of being in between the non-allergic and allergic worlds: I’ve been filling out summer camp paperwork for the kids this weekend, and am at a loss regarding how to fill out the section that asks about allergies and medications. For purposes of informing their camps, do they have food allergies or not? If yes, do we need to go through the same song and dance that we have in the past, which involves lots of pre-camp conversations, training camp counselors on proper EPI-pen use and what reaction symptoms to look for with our kids, reviewing the camp’s allergy safeguard protocols, laminating and posting A&A’s allergy action plans, checking ingredients labels for proposed snacks, and then talking with the other parents? Or can we just send our kids off to camp with a backpack and a kiss, and be done? I might have to add THAT to the Wishing Wall…