May the Nuts Be With You

On July 4th, 2009 and while picnicking with friends, Will put a peanut in his mouth. Immediately he began to gag and claw at his tongue, almost as if choking, so Tom and I quickly reached into his mouth and swiped the peanut - which was resting at the back of his throat - out and onto the ground. Will continued to scratch his tongue and the outside of his neck, so we cut an adult Benadryl in half (we didn't have any children's Benadryl with us), managed to get him to swallow it, and nervously watched him as the medicine did its job.

This picture was taken shortly after the peanut incident. I
notice now that he was still scratching the front of his neck.

Shortly thereafter, Will was diagnosed with a severe peanut allergy, and since that day he has followed the only established standard of care for individuals with peanut allergies: strict avoidance while always carrying an epi-pen and Benadryl.

But times they are a-changin'...

Throughout the last five months and under the strict supervision of his allergist, Will has been participating in a peanut desensitization in an attempt to train his immune system to no longer react negatively when exposed to peanuts.

Will began by consuming nearly microscopic quantities of diluted peanut powder twice daily. These doses increased until he could consume minuscule quantities of pure peanut powder, which I measured out on a high precision scale. These doses also increased until Will "graduated" to eating one peanut every morning and one peanut every evening, and from one peanut we slowly moved to 2, 3, 4, 5, 6, 7, 8, 10, and finally 12 peanuts twice daily.

Will's last official peanut dose last Tuesday night.

Each new dose was administered for the first and second time - one dose followed by a second dose 15 minutes later - in the allergist's office. We then administered that dose at home ourselves for at least one week before returning to the allergist's office to increase to the next amount. We treated Will's peanuts like medicine: overseen by an adult, taken on a regular schedule, and never missed. Will couldn't eat or exercise for 30 minutes after a dose so he had to adjust when he woke up in the morning and when he ate both breakfast and dinner. In the beginning, Will experienced a number of unpleasant symptoms - difficulty swallowing, tingly lips, and an itchy throat, mouth, and tongue - following each dose, but interestingly, the longer we continued with the process the less Will experienced these symptoms, even though his doses were getting higher and higher. By the time we reached six or seven peanuts the symptoms had all but subsided.

Last Wednesday morning, Will and I arrived at the allergist's office for his final appointment in this process: the peanut challenge. Over the course of about 15 minutes, Will ate a peanut butter and jelly sandwich (up to the crusts), a peanut butter chocolate chip granola bar, five peanut butter pretzels, and a Reese's peanut butter cup, and then we waited for 90 minutes while the nurses kept tabs on his vital signs and symptoms. When all was said and done, Will PASSED and walked out with permission to, for the first time in his nearly 12 years of life, eat whatever he wants.

The various peanut selections we brought with us to the challenge.
Will ate the sandwich up to the crusts, the granola bar, a handful of
pretzels, and one Reese's peanut butter cup. 

Will's first peanut butter sandwich. Yes, it's weird to take pictures of
people while they eat, but there were already six people watching him
so I figured, why not make this eating experience even stranger? 

The caveat is that in order to maintain his desensitization, Will HAS to continue eating peanuts/peanut butter/peanut products for the foreseeable future. The hope is that after remaining desensitized for between three and five years the actual allergy will begin to decrease, but for the time being, he falls into a strange category: allergic to peanuts but required to eat peanuts daily. I'm learning, as we prepare to go back to school, that this makes filling out medical forms kind of tricky.

This process took a long time (the average desensitization lasts between four and six months) and was physically challenging for Will, not inexpensive for Tom and me, and emotionally exhausting and mentally frustrating for all three of us. (Only Hallie emerged unscathed.) But every uncomfortable symptom, every payment, every nerve-wracking moment, every tear...they were all worth it because we no longer need worry about accidental exposure and potentially deadly reactions.

May the nuts be with you, my boy. You did it.

For those of you who have kiddos with food allergies, or who have food allergies yourselves...

Consider finding an allergist who can at least assess whether or not your child is a good candidate for this process. This process is new, but as more successful cases like Will's are documented, more allergists will begin to offer desensitization in their offices. (When I say "new", I mean NEW. Will's allergist is the only one in our area doing this kind of desensitization, and some communities, even those bigger than ours, are completely without this opportunity for kids with allergies. Will was only patient #19 at his allergist's office, was the first child ever at his summer camp, and will be the first child at his school to have participated in a peanut desensitization.)

Something else to consider... Besides being a good candidate for desensitization from a medical perspective, Will was - is - the "right kind of kid" for this process. He is a rational and cooperative people-pleaser, which meant he understood why we were putting him through this challenge and how it would improve his quality of life in the future. He wanted to succeed to make me, Tom, and his allergist happy and because he's competitive and always wants to "win", no matter the situation. For the sake of comparison, this process with Hallie would - at least until very recently - result in DISASTER. She cannot be reasoned with or bribed, and when she doesn't want to do something she is as stubborn as the day is long. During one appointment, Will and I listened as an approximately seven-year-old little girl with a stubborn streak like Hallie's held a bite of egg in her mouth - while also screaming and crying - for 57 minutes. At one point Will and I turned to each other and both said some version of, "I don't think she's going to make it". A child with that kind of personality would have trouble making it through the process. (That little girl did not successfully complete her egg desensitization.) 

If you have questions about our experience or want to know more, don't hesitate to email me at erin@chasingroots.com or erinlferris@yahoo.com.