A few months before Will's third birthday, we discovered he had an allergy to peanuts. The event - eating just one peanut and having an immediate reaction to it - set in motion 14 years of pediatrician and allergist appointments, skin and blood testing, regular and rescue medications, medical alert accessories, school paperwork, and eventually, interventional treatments. (Will already had quite a few diagnosed allergies by this time, but peanuts was the only one likely to cause anaphylaxis and was therefore a more serious issue.)
In March of 2018, Will began - under the watchful eye of and following a strict protocol created by his allergist here in BCS - a peanut desensitization. He was one of the first people in our area to go through this process after his allergist trained with another doctor in Dallas and brought what he had learned back to his practice. The desensitization itself - from peanut powder diluted in water to dry peanut powder to peanuts themselves - took six months and involved weekly two-hour appointments as well as a daily dosage schedule that he/we followed both morning and night, every single day. (To give you an idea how far he came in six months...Will started with a teaspoon of water containing barely measurable amounts of peanut powder twice a day and ended with 12 full peanuts twice a day.) The process was emotionally and mentally taxing, partly because giving your child a food that could kill them is scary, and partly because our lives revolved around making sure Will never missed a dose. Those you who have spent time with me at any point after March of 2018 have probably heard my peanut alarm go off, which in the beginning reminded me to prepare Will's peanut dose and then in later years reminded me to remind him to take his peanuts.
After six months of gradually increasing his dose, Will passed his peanut challenge, meaning he had made it through the desensitization phase and could move on to the maintenance phase: taking 12 peanuts once a day, rather than 12 peanuts twice a day.
When we began the process, our allergist told us we could expect Will to be on maintenance for two to three years. The hope - based on emerging research - was that throughout these two to three years, Will's allergy itself would actually decrease enough that he would be considered no longer allergic (or at least a lot less allergic) to peanuts.
Will's RAST test (a blood test performed to determine a patient's potential to react to a specific allergen) before the desensitization was around 70. I've seen different scales to explain how the RAST is scored, but here's one of them.
Will, with his score of 70, fell into the Ultra High/Category 5 range. But after one year on maintenance, his score dropped to 32. After a second year on maintenance, his score dropped to 16. After year three, to 12. And after year four (yes, there was a fourth year), to 10.
But then this past fall, after his FIFTH year on maintenance, Will's score went up. We have our suspicions why, and while I won't go into them here (I'm happy to share them, just not here on the blog), I will say that they stem from the physical, mental, and emotional toll this process they took on Will.
Here's the thing. Most people don't like the taste of foods they're allergic to, as that's the body's way of telling the brain, "maybe we shouldn't eat this." Will hates peanuts more than you or I hate any food. He despises the taste as well as the smell, which he can sniff out like a bloodhound. (I'm not kidding. If I eat a Reese's peanut butter cup for dessert at night, he can smell it from across the room and won't come give me a hug or kiss goodnight until I've brushed my teeth.) Imagine being "forced," even if it's for your own good/safety/to save your life, to eat the thing you hate most in the world - and that makes you feel uncomfortable and unsettled - every single day for five and a half years...especially when you thought it would be two or three years. The longer the maintenance stage dragged on, the harder it became on Will.
Despite the fact that Will's RAST score had risen slightly, his allergist decided the time had come for Will to try to challenge his actual peanut allergy. They had Will stop taking his peanuts for six weeks, and then he went in to the office to, well, eat a lot of peanuts. Though doing so caused Will a great deal of discomfort and resulted in a little bit of eye swelling, he did eat a lot of peanuts - around 40 - and as a result, passed his challenge.
So after 14 years, he's done. He no longer has to check the "allergic to peanuts" box. He no longer has to carry an epi-pen.* He no longer has to eat 12 peanuts a day.** As a result, his frustration and anxiety have decreased, and he seems like he's carrying less weight on his shoulders than he was before.
Since Will hates peanuts and can both smell and taste them IMMEDIATELY, I don't have to worry that he's accidentally going to consume 40 peanuts. The place we've landed - this "finish line" of sorts - allows us to feel confident that if he ever accidentally eats a peanut, he won't die. And that makes all 14 years of this journey worth it.
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* I will continue to keep epi-pens on hand at home, and Will will continue to carry epi-pens in his car, backpack, and soccer bag. He may never need one, but someone else might, and it's always better to be prepared.
** While he no longer has to eat 12 peanuts a day, he does need to periodically eat a few peanuts to maintain his desensitization long-term. Will and I agreed on four peanuts (the number he can handle taking at one time) twice a month (he wanted once a month while I wanted once a week, so this was a compromise), and we'll continue this indefinitely.
For those of you with kiddos with allergies, feel free to reach out. Additionally, here are a couple of blog posts I've written about Will's experience with the desensitization process.
Starting the desensitization process.
Finishing the desensitization process and starting on maintenance.
