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!