Hard habit to break

More new firsts for the week: we had take-out Thai food in our home, on our table, nuts and all. That was a crazy site for me. Thai food was the most off-limits of all the food genres due to the pervasive nuts, and there it was, sitting in our kitchen. We ate with friends who, when they arrived, started to separate their young son from his container of little snackies in the car, lest he bring them in and risk contaminating our home with nut products. “Not to worry,” I said; “it’s not an issue anymore.” We all stood and looked at each other, shaking our heads in disbelief.

And speaking of disbelief… I took Ari to a drop-off birthday party this weekend, and as we were driving, we discussed the fact that – because he’s graduated and because he finished his dose for the day - he could eat anything at the party that he wanted. (I didn’t mention that I couldn’t have even dropped him off previously, as watching a kid with severe food allergies at a party is a lot of responsibility to ask another parent to absorb; that’s another first unto itself.)  As we got closer, I told him I’d come in to drop off his EPI-pen (still needs to go everywhere with him) and check out the food, and he asked me why. “Why do you need to check out the food? Can’t I eat anything now?” I was quiet. He was right. He could eat anything; there was no reason for me to check out the food, other than daily habit and regimen, drilled into me after five years of anxiety. I laughed with Ari about it, and told him that I’ve done it for so long, it’s hard for me to remember (and believe) that I don’t need to anymore. He asked why he still needs to have an EPI pen, and he seemed ok with the fact that it’s a precaution that Dr. Nadeau said is still important. It felt strange to hand off the EPI pen to the host family without the usual detailed speech about food restrictions, what to look out for, etc. Instead, I felt that Ari is mature enough to watch out for his own symptoms, so we discussed how a reaction presents for him… “spicy” mouth (as he describes it), itchy/blotchy skin… and that he is supposed to tell an adult immediately if either of those things begin to occur. He seemed comfortable with that responsibility, and recalled the spicy feeling during the updose days, so knew what I was talking about. 

As I dropped him off there to eat all of the foods he couldn’t have touched a year earlier (ice cream toppings, cake, etc. – yes, I knew what they would be, because I couldn’t help myself and had to ask anyway, once he was out of earshot), I felt so proud of him and his calm maturity through all of this. That’s my big little guy.

Good news!

Great news, actually! It’s looking like Ari & Aviv will be able to have a regular kid experience at school in the Fall! We got permission today from the SAFAR team for Ari to go to school without restrictions – he doesn’t need a nut free classroom and can eat whatever food is shared/given out, even if it has nuts in it. This is HUGE! There seems to be a lot of food preparation in the classrooms at his school, and many school-wide events with food, and he wasn’t able to participate previously, having instead to eat a snack from his ‘safe snacks’ bag. No more. Now he can experience the foods with the others, as he loves to do. The SAFAR team was so thrilled with how minor his skin test reaction was at his ‘week 24’ day and how he was able to double his maintenance dose with no reactions that they’re comfortable with him being without restrictions. As for Aviv, he still needs to pass his ‘week 24’ food challenge and graduate into maintenance mode, but assuming that occurs, they are very hopeful that he won’t need a nut free classroom either, and that he can eat food shared at school. The restriction for him will likely be that he shouldn’t eat anything with actual nuts, outside of his dose, outside of our view, since he has had some reactions along the way. Considering how hard it is to get him to eat his required nuts, I’m pretty sure he’s not going to feel bad about not being able to eat even more. This news is fantastic, and we’re so thrilled. We still want to see Aviv graduate (his appointment is in one month) and be officially given the green light, but this is very promising. (They will still need to keep EPI pens around, just in case, until they test negative to skin tests.)

Aviv’s updose was uneventful today, which is exactly how we want it. The staff mentioned that his breathing test (which is what he does at the beginning of every appointment, due to his asthma) was very strong today, which was reassuring to hear. It hasn’t always been, during these past six months. Also notable was that Aviv mentioned that he was proud of himself for the way today’s appointment went… we feel he’s often too hard on himself, and it’s good to see him feeling a sense of achievement.  Ari has taken an interest in more of the details of the study, asking today to see pictures of his skin test results, and wanting to know how we know it improved since the beginning. He seemed very pleased to be able to identify from the markings which skin reaction was for which nut (“the H must be for hazelnut, right, Ima? That one has the biggest reaction”), and liked his role in confirming the facts.

Now for some Jeopardy-style metrics…

-What is 3lbs? The weight of the nuts consumed by A&A in one week. Aviv is currently eating ¼ of a pound of nuts per day, and will get to 1/3 of a pound per day by maintenance. [Pic of 4 days worth of Aviv’s dose, to the right.]

-What is 60? The number of nuts Ari is required to eat per day.

-What is 104? The number of nuts that will be in Aviv’s daily required maintenance dose. (He’s at 84/day currently.)

-What is 4? The number of people who are sleeping better in our house tonight. : )

Desensitization in Prime Time

We were on vacation last week – as far away as we felt we could be during the trial, which was to Lake Tahoe – and for the most part it was great. The ability to stretch their doses out throughout the day (since we were with them all day) was incredibly helpful. There was still frequent resistance from Aviv, who continues to not want to eat his dose. The promise of being able to eat any breakfast food (after morning dose), any lunch food or snacks (after afternoon dose), and any dinner food (after evening dose) is motivating for Aviv, and that’s what kept him on track. Ari continues to eat his dose on schedule, because that’s what he’s supposed to do, and that’s the kid that he is. He was very surprised when a conversation about his ability to eat any nuts, any time, came up… “You mean I can eat anything? Even something with nuts in it?”, he asked incredulously. I reminded him that he graduated from updosing, and was now in maintenance mode, which meant that he had to have his dose each day, but also that he could eat anything else. I could almost see the wheels turning in his head as he processed this information. “What do you want to eat? Are there things with nuts you want to have?”, I asked. “I don’t know…” was all he could meekly reply, backing away, a bit overwhelmed by the possibilities.

 They continued to experience firsts… their first Nestle chocolate ice cream bars, picking out candy from bulk bins at a candy store… and we continued to be creative with doses… heating up Aviv’s dose cookie on the dashboard of our car while driving, making ice cream sandwiches with the dose cookies, and making chocolate covered dose bars (verdict: Ari found them delicious; Aviv went on a hunger strike). When Aviv digs his heels in, it’s tough. He really hated the dose bar, resulting in a lot of tears, a lot of screams (“I hate you, and I hate dose!”), no other food, and finally at 7pm, after two hours of coaxing, he finally choked it down. Orr normally bakes dose treats for them every four days, but rather than put anyone through that pain again, he made a new batch of dose treats that night for Aviv. For what it’s worth, since there was a lot left over, I ate some of the dose bar and found it to be very intense. I love chocolate and I love nuts (or used to, before all of this), but I don’t know that I could eat the full dose bars. I really don’t know how they’re doing this.

Ari came running into our room tonight, excitedly calling to me, “Ima! Can I take off my bracelet now, since I’m not allergic to nuts anymore?” I looked from his expectant face to his worn Medic-ID bracelet that he’s had on his little wrist since he was two, which informs the world of his allergies, blood type and to call 911, and my heart sank a bit for him. He’s still trying to figure out what all of this means, what his new ‘status’ is, what he can do now… and who can blame him? I’m trying to figure it out, too. I told him that Dr. Nadeau wants him to keep wearing his bracelet until more time passes and he’s been through more testing, so she can confirm that his body continues to remember what it was taught about not being allergic. He asked if that meant he had to wear it until he was 9 – two years (the length of the study) from now. I told him it was a great question and that he should ask her when he sees her next. He nodded and then asked when the study would REALLY be over, as he doesn’t want to have to eat his dose forever. Who can blame him? I told him that Dr. Nadeau and others are doing lots of research to figure out how long people need to keep eating their dose, and until then, he needs to keep eating it. That was not what he wanted to hear, but that is certainly the state of the medical research.

Speaking of, you may have seen stories recently about food allergy desensitization work (or oral immunotherapy “OIT”) in the news, as a new study was published last week in the New England Journal of Medicine by a colleague of Dr. Nadeau’s (and pioneer in this space), Dr. Wesley Burks, about the egg allergy desensitization trial that he conducted. The story was picked up by CNN, Time and others, all of whom presented the research as very exciting and a cause for optimism. I couldn’t help but be excited, too, thinking this treatment path is finally ‘reaching prime time’, which means both the recognition of its efficacy, as well as support, will hopefully increase. Even the Mayo Clinic’s website (under Food Allergies: Experimental Treatments) discusses OIT as looking ‘promising’ as a treatment. As I read aloud the articles to Orr and others last week, Ari & Aviv listened intently. We know firsthand that OIT works; we live it every day! That’s not news to us. The big wildcard is whether the immunity can be sustained without the daily dose. In Dr. Burks’ study, after desensitizing 75% of the patients who did the egg OIT over a period of 22 months, the patients were then told to stop taking their daily dose (or any egg consumption) for 4-6 weeks. After that, only 28% passed their oral food challenge. So while it appears that some continued ingestion is needed to maintain the immunity that can be built up through OIT, only time (and more research) will tell how much and how often. So where does that leave us? For now, continuing on with large daily doses, to be sure. It’s still a little unclear to me how we’re to handle school in another month… assuming Aviv graduates into maintenance mode next month without issue, do they need a nut free classroom, or not? Can they eat any food given to them when we’re not around? So far Dr. Nadeau has recommend that we don’t change the protocols in place at school, but it could be confusing for some (including A&A) to send them to school with their doses (as we’ll need to do, in order for them to spread out the doses throughout the day), but then have other restrictions. This is an area we’ll continue to explore with her. It’s not just an issue of confusion or logistical challenges; it’s one of inclusion and fitting in. Safety first, to be sure, but we’d like to ease the restrictions for them where we can.

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A friend who I hadn’t seen in a while asked me today if we decided to stay in the trial. Last time I spoke with her, we were in the middle of an especially rough patch with the boys’ ingestion and we weren’t sure we had the strength to continue. In explaining to her why we decided to persevere, I told her that while sticking with the daily doses is hard, living with severe food allergies is harder, and if I have to pick which hard thing to do, I’m going to pick the hard thing that protects them, rather than the hard thing that puts them back at risk with every touch of a library book or door handle. Such are the decisions we make all the time, right? Which hard choice is the best one for our kids/our families? That’s the most important job we have as parents. So with that in mind, tomorrow Aviv heads back to Stanford for another updose - likely a 25% increase from 14,000mg to 17,500mg – and I can only imagine how he’s going to react to eating more. The good news is that while he’s intellectually opposed to the doses, his body seems to be tolerating them just fine, without any reactions. There’s so much that he understands beyond his five years, but this is one of the areas where we just have to make the tough decisions for him, push him to continue, validate his emotions when they spill over, and encourage him along the way until he’s able to understand the value and motivate himself.

Ari's Graduation Day

It was 11 months ago – almost to the day – when we first met Dr. Nadeau and took the first steps toward her changing our world. What a difference a year makes, and what a big day today was… Ari has now graduated into maintenance mode! He did a great job plodding through *8* dose cookies (each chock full of 3 grams of nut protein) for a whopping 24 grams of nut protein today, and he was totally fine. He had some difficulty swallowing at the end, but who wouldn’t? He didn’t have any symptoms of a reaction, so it was deemed a clean test. He also did a blood test and a skin test (both of which he stressed over, only to say after, “Oh… it’s done? That was easy!”). They record the skin test results in a really interesting way, where they mark the back and skin pricks with a pen, circle the reactions, then put tape over it to capture the ink imprint; that way they have a near perfect replication of the reaction. Because of that, we were able to compare his skin test results today with his initial one back on October 25, 2011 – there was almost no reaction whatsoever to pecan and walnut today and they considered it a negative reaction. That was surreal to see. He still had a skin reaction to hazelnut, but not that much more than the positive control prick, which didn’t faze them at all. We were told that it takes the skin a while to catch up to the body/blood, and that they expect there to be about 6 months of maintenance before his skin test would show completely clear; the fact that it did for walnut and pecan so quickly was a pleasant surprise for everyone.

So Ari received his “Congratulations!” letter and moved into maintenance, which means that he must continue having his 4 grams/nut/day to maintain his body’s immunity to the nuts, but can have his dose at any time without us needing to watch him or restrict activity. In addition, he can freely eat things that don’t have nuts in them (but were made in a facility/on equipment with nuts) without us around (that will open up a lot of relief for him at school and play dates), and he can have foods with nuts in them (in addition to his daily maintenance dose). We were warned not to let him go beyond 8 grams/nut/day, as that is untested territory and may be too much for his body. I’m sure that won’t be a problem for Ari, as getting to 4 grams/nut/day is hard enough, but we realized the challenge that accidental overdose of allergens poses to others in the study who are being treated for items that are very high in protein density, such as dairy or egg. For example, 1 egg constitutes 4 grams/protein; that is someone’s entire daily dose. Have a few slices of cake or pastries and you could easily go over 8 grams. We spoke with one of the other trial participants who did just that last week, and unfortunately had bad reactions. The grass is always greener… during the updosing, it felt to us like those treating dairy and egg had it easier, but now the risk of accidental overdose is much higher for them moving forward, whereas we are unlikely to inadvertently cross the line.

Finally, before leaving, we were reminded that Ari is still allergic, and must still carry his EPI-pen and wear his Medic ID bracelet, and should still be observed for reactions when he’s eating nuts, especially during the next year of monitoring. Until such time (if ever) that he can eat nuts without being reliant on a maintenance dose (which is just medicine to support his body), he will be considered allergic. That’s different than we thought at the outset, and a bit sobering on an otherwise joyous day, but it makes sense. It may be, down the road, that Dr. Nadeau or other researchers find that we can decrease the maintenance dose and still maintain the immunity, but it hasn’t been validated yet. They will continue to monitor Ari through periodic visits (one in 6 weeks, then 6 weeks after that, then 3 months, and 3 months) where they will do blood and skin tests each time, to track how his body is doing, and we will contact them if anything goes awry. No more bi-weekly visits to Stanford for Ari or keeping of dosing diaries each night. Truly unbelievable that we are here in this moment.

As for Aviv, it was a big day for him as well. His updose (to 14,000mg) went very smoothly, and while he has two more updoses to go before his graduation day, the milestone that he reached today was surpassing Ari in sheer volume of dose. While Ari will hold steady at a maintenance dose of 12,000mg, Aviv moved beyond that to 14,000mg today (2800mg/nut), on his journey up to 20,000mg. His body is being pushed to do things that haven’t been done, and he’s so close to the finish. We had a talk with him tonight about this big milestone for him, and tried to explain to him that he’s the only kid in the world to be doing what he’s doing. That was hard for him to understand, but when we told him Dr. Nadeau picked him to be the one, his eyes beamed with pride. He has had such a beautiful connection with her from their first meeting, and that connection has helped give him the strength to be brave.  He also taught us all something new today, stemming from his constant desire to ask questions and find alternate ways to do things: apparently blood pressure cuffs don’t need to be worn on the arm; the leg will work just as well (and apparently makes you smile more).  Thank you Aviv, for always reminding us to think outside the box about how to do things.

Finally, let’s not forget our two big patients… Orr and I both had our blood drawn today as well for purposes of furthering research around the hereditary aspects of food allergies. Aviv was proud to help Alicia with the blood draw (he likes to hold the vials), and Orr managed to get through it (barely) without Buzzy. With that, we close the chapter on Ari’s updosing, and look forward to this next stage of the trial with a mix of excitement (finally!), confusion (is this real and how do we explain it to people?) and trepidation (hey! Where’s our co-pilot?). Stay tuned…

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… : )