Happy new year!

With all of our tests and pre-screenings behind us, the real treatment now begins – woohoo! Many of you have asked what that means. First, our oral challenge days are behind us (woohoo, again!). Those were described to us as more difficult than the actual treatment, which we hope is true.

Since we are in the “Xolair plus” trial (which means that, in addition to the standard autoimmunotherapy protocol, the boys will be receiving a medication, Xolair, which provides additional protection during the trial and has the bonus effect of speeding up the treatment time), the boys won’t receive any nuts for ingestion during the first few months. Instead, for the first two to three months (starting in January), we’ll head to Stanford once per month so that A&A can receive 1 shot of Xolair each. Xolair is a drug that is currently used to treat severe asthma, as it suppresses the body’s IgE reactors, resulting in fewer/milder allergic reactions. The drug is thick, and the shot will take some time to administer, but each appointment should last no more than one hour. A&A will receive their shots monthly, but others may receive it more frequently; we got off easy on this score! They will receive approximately 4-6 shots of the Xolair total, and around the third month, they will begin to receive the allergens (their respective 3 nuts) to ingest, as well. At that stage, we'll go to Stanford every two weeks to receive the measured amounts that we will administer to our kids each evening, and to “up dose” to the next level/amount. Those appointments will take several hours as the staff watches as the boys are given an increased dosage, which will set the new baseline for the next 2 weeks. Once back home, we’ll administer their daily dosage in the evenings. The kids will need to remain calm (not active, and not in hot water or in the sun) for 2 hours before and 2 hours after the daily ingestion. (No problem keeping young boys calm for 4 hours a day, right?!) Two hours after ingestion is the time in which most reactions occur, and activity and heat can encourage a reaction, so we’ll need to watch carefully. Also, apparently 80% of kids experience some discomfort during the treatment process, ranging from stomach aches to reactions (mild or strong). We’re certainly concerned about what discomfort may lay ahead for them, and will have to address it as it arises.

Until the course of treatment is over, we will need to remain as diligent as ever about not letting the kids touch or ingest nuts outside of the treatment protocol (meaning, they still won’t be able to eat anything with or made in a facility with nuts that isn’t their daily measured dose or given to them by the Stanford staff). I’m hoping that won’t be too confusing of a message for either the boys or others around them. We have full access to Dr. Nadeau and her staff during the treatment period, and must call them if there is any reaction whatsoever. It’s very reassuring to know that we have such a great team of specialists invested in seeing this succeed.

The prediction is that the entire course of treatment (for this Xolair study) will be around 4-8 months - no guarantee of course; every kid is different - after which A&A will have been desensitized to their nut allergies. If that doesn’t make for a happy new year wish, I don’t know what does.

Wishing happiness and good heath to all of you in 2012!

Cleared for take off

Yesterday, I went into my ‘pit crew’ mode: getting permission to pre-board our flight to Mexico, notifying the flight crew of the boys’ allergies, and launching into an intense de-contamination binge, wherein I hurriedly but thoroughly wipe down everything a small child might want to touch (read: everything in reach) so that no nut residue remains that could trigger a reaction. As much as one wants to avoid a reaction on a daily basis, the desire is magnified when the result could be anaphylaxis at 35,000 feet up. So anyway, as I took out my bag of cleaning tools and wiped down every nook and cranny and tray table and emergency exit card, ignoring the stares and comments of other passengers all the while, trying to rush to cover every spot before Orr boards with the boys, I thought of our future life without these allergies.

We wouldn't have to wipe down the seating area of the plane before boarding, notify the flight crew (so that they're aware of the issue), notify ground crew (to get permission to board with the crew), bring on all of our own food (and as many of you know, our boys eat A LOT!), notify the people seated around us (so that they don't touch our kids/their seats after eating the multitude of nuts that are served), quarantine the kids to their clean seats during the flight, bring onboard a small clinic's worth of medication with all the accompanying doctor's notes (just in case), pack a suitcase of food for eating on the trip itself (that we hope customs at our arrival destination will be ok with), bring a note (translated into the language of our destination) that explains to chefs/hotel staff about the allergies, remind our kids constantly to keep their hands out of their mouths, and - even with all of that - remain on edge and hyper-vigilant the whole trip.

Orr and I have talked about what life will be like when we as a family are free from the risks and restrictions that these allergies bring. We’ve decided that once the boys begin the actual ingestion portion of the desensitization treatment and we see it working, we’re going to turn a wall in our house into our wishing wall. There, we’ll each get to write down our wishes of things we want to do once the treatment finishes – things we haven’t been able to do with their allergies - and then cherish accomplishing them one by one. I would imagine the boys will add things like ‘go to a bakery and pick anything we want’ to the wall. Call me a simple girl, but the top item on my wish list is boarding a plane with my family, and sitting down with no worries other than run-of-the-mill, turbulence or lost luggage related concerns. As I finished my de-contamination efforts, put the EPI’s in the seat pocket in front of me, the wipes and a new garbage bag next to me, and welcomed the boys on to the plane, I dreamt of that day.

Kids will be kids

Ahhhh, kids...

 As mature as Ari & Aviv are, and their ability to recite their own patient history surprises doctors, and the ease with which they can discuss life threatening scenarios goes way beyond their young years, I need to remember that they are still 4 and 6. Some of their lab work came back, and they heard us talking with the Stanford staff about their IgE scores. Out of the corner of my ear, I hear Aviv teasing Ari, in the way that only siblings do: “Ari: Ha ha… my IgE score is higher than yours…”

Recap of the rest of the oral challenges

It’s a good thing that I’m writing this after all four double blind challenge (dosing) appointments are over (instead of after the second one), as I have more perspective, which will (hopefully) result in a less harrowing post. Let me first get this out of the way: the second oral challenge appointment (back on 11/9/11) was awful. It played out like the host of nightmares I had imagined might occur, and it took us a bit to recover from it, which is why I didn’t write up our experience right away. Each boy was given their mystery nut that day, and Ari’s process moved forward as all of his challenges did – smoothly, with clear indicia of his reactions that gave the Stanford staff the information they needed in a timely and calm manner, and resulted in the challenges ending for him prior to a strong reaction. The staff only needs to see a small reaction at each challenge - they don’t need it to be, nor do they want, a massive reaction – and for Ari, that presented as swollen lips (the little indentation area in the middle of the top lip that Aviv has named ‘plupit’), redness at the edges of his mouth, and what he describes as a ‘spicy’ feeling in his mouth with evidence of some hives there. The oral challenge process for Ari mirrored Ari’s personality: predictable, calm and exact in communication (with no shades of grey or confusion). With Ari, what you see is what you get.

Aviv is a different story, both in personality, and through this process. He has been described as many medical professionals as ‘complex’ and hard to interpret. When he had his strong reaction during the first challenge day (getting very angry, welty and yelling about the spicy feeling in his mouth), we were surprised that the reaction was so strong, so fast. It turns out that we all missed the first symptom of his reaction (and missed it again during his second challenge), as it’s unusual; having seen it occur twice, however, it’s very clear to us all now that the way the first symptom of a reaction presents for Aviv is not in his mouth but in his ears. He complained of ear pain after the second dose on both the first and second challenge days, and both times, we thought his ear pain was due to the headphones he was wearing to watch a movie. (The oral challenge days are long ones in the hospital, and to keep the kids occupied, we bring an iPad loaded with movies for them.) The staff checked him after he complained of the ear pain both times, but didn’t see anything unusual – no redness, welts, spike in blood pressure, etc. Whether the pain was actually in his ears, or in the throat/adenoidal area (that is best explained by a 4 year old as ear pain), we don’t know. What we do know (now) is that we all missed that first symptom, and as a result, kept going with the dosing. Thus, instead of Aviv stopping the increased dose of the mystery nut when he first started to react (and giving him meds to stop the reaction), he was given the next dose of nuts. What happened then is that he freaked out – screaming, kicking, dots starting to form on his skin, you name it. It was clear that the dosing was over for the day, and it was time for him to take the antihistamines to stop the reaction. He didn’t like the one offered, and in trying to help him feel a bit of control (as he is a kid that gets very upset when he feels he has no control), we gave him the choice of which medication to take at that moment. Huge mistake. Every second mattered, and as we tried to convince him to take the meds, his reaction increased exponentially. What we learned that day is it takes 6 minutes for Aviv to go from zero to sixty, meaning to go from ingestion to full blown, covered in welts from head to toe, hampered breathing, reaction. I sat in the hospital bed holding Aviv to me (as he was writhing and lashing out), trying to apply antihistamine cream to his entire body while the staff forced medication into him orally and via an oxygen and albuterol mask. We were behind the proverbial 8 ball, and it was not good. It took many hours and the legal maximum of medication (literally, the staff calculated and administered the max amounts Aviv could have, based on weight) to bring him back. In what I could describe as either an aloof personality or having an amazing survival/defense mechanism, Ari seemed oblivious to all of the commotion occurring around him. While the staff (and Orr & I) went into high gear to take care of Aviv, rolling over an oxygen tank, monitoring equipment, etc., Ari – who was laying in the same hospital bed with Aviv and I! – sat fixated on the movie he was watching, headphones on, and didn’t notice a thing.

We went home exhausted that night, all crawled into bed and fell asleep together. The next morning, both boys popped up like nothing had occurred and neither seemed to remember what had gone on; it was only Orr and I that seemed scarred, and we soon had to shake it off, because there had been an appointment cancellation in the study, which enabled us to take the boys back for their third oral challenge day. As rough as the first two had been, the goal was to get through these four oral challenges, so that we could move to the treatment phase of the trial. Luckily, with our new found knowledge of Aviv’s surprise ‘ear pain’ symptom, the next two challenges went MUCH smoother; identifying the reaction as soon as it starts enables you to stop it quickly, without moving to the painful or dangerous stages. Additionally, one of those was Aviv’s placebo day, so he didn’t react at all.

At the end of the fourth challenge (12/5/11), they ‘unblinded’ the results so that we knew which nut was administered on which day. The most interesting part was that Ari’s first challenge day – that we thought might be a placebo, but weren’t sure – wasn’t. That meant that there was an inconclusive reaction to the nut (walnut) in this setting, which was at odds with his skin tests, blood tests, and his first live reaction several years ago. Dr. Nadeau suggested we try an open challenge to it – which means going through the same oral challenge protocol in the hospital, but with the knowledge that it’s walnut – to see what occurs. We did that yesterday, and observed Ari’s reaction to it. With that final piece of information in, Dr. Nadeau decided on the three nuts that each boy will be treated for, and shared with us the fantastic news that each of her 5 allergy trials has now been approved by both the FDA and the Stanford IRB, so they’re all open and moving forward! All pre-treatment work having been finished, Ari and Aviv will begin actual treatment in January. The best holiday present ever!

From our holiday newsletter

"The big news in our lives is that Ari and Aviv were, miraculously, admitted to a cutting edge, research trial at Stanford, which has had great success in previous trials in desensitizing children to their food allergies. What this means for us is that we will spend the next 6-9 months bringing the boys to Stanford Hospital every two weeks for treatment that will hopefully desensitize them to their life-threatening nut allergies. The treatment itself will not be easy, but is certainly worth it. Gone would be the days of anxiety over what nut residue may lurk on every library book, playground equipment, soccer ball, school art supply, restaurant table, birthday party bouncy and airplane seat. Our kids would be - for the first time - free to eat whatever they want, anywhere they want, without the fear of having an anaphylactic reaction. We can’t begin to explain how life changing this would be for our family.

This miracle is due to the phenomenal research and perseverance of an amazing doctor at Stanford, Dr. Kari Nadeau, and her team, who are making it all happen. Dr. Nadeau’s allergy desensitization research and treatment is funded through philanthropic donations, so we invite you to join us - and Ari and Aviv themselves, who have been collecting change and have donated it to her research – in supporting her important work. Ari announced proudly to his classmates, the day after receiving the good news that he and Aviv had been accepted into the study, that by the time he enters First Grade (9 months from now!), he won’t have nut allergies anymore. We want to do everything we can to help his dream come true. To learn more and give, please go to http://foodallergies.stanford.edu/.

So as 2011 comes to a close, we feel incredibly grateful – grateful for the joy our children bring us, grateful to live in a beautiful area with amazing medical care, grateful to be a part of a warm community, and grateful to have you in our lives.

Wishing you only the best in 2012."