Monday, March 26, 2018

Taking a Risk

Will started off life with an allergy to dairy, and over the course of his first two years of life he added wheat, egg, and peanuts to that list. Despite the fact that Will's allergist in Ann Arbor came highly recommended, she rubbed me the wrong way. Actually, "rubbed me the wrong way" is an understatement; I couldn't stand her or the other doctors in her office. They were - as a group - condescending, unprofessional, and at times downright disrespectful, and they never once made an effort to actually help our family navigate the extremely confusing, frustrating, and scary terrain that is allergies in children. If I hadn’t known we were moving to Texas I would have found a new allergist, but since I knew we were relocating, I decided to wait it out with our Ann Arbor allergist and start anew when we arrived in College Station.

Once we found a pediatrician in College Station, I met with her and asked for an allergist recommendation. She spoke very highly of one particular doctor and his office, so I called and spoke to the receptionist and one of the nurses. They were kind and understanding and flexible (foreign to me, when it came to allergists) and assured me their office could provide for Will the two primary things I was looking for in a new allergist: a complete retesting for all of Will’s already diagnosed allergies as well as testing for other common allergens, and a progressive treatment plan.

Will outgrew his wheat allergy as a toddler back in Michigan, but the new tests we had done once we moved to Texas showed he had likely outgrown his egg allergy as well. We challenged out of eggs and cut the list of food allergies down again.

One of the best characteristics of the team at our College Station allergy clinic is that they care about more than simply diagnosing allergies and then sending patients out the door with a prescription for an Epi-pen; they care about our quality of life, and how to improve it.

Studies have found that children with diagnosed dairy allergies who consume specially made (specific ingredients mixed in a particular way) and baked (significantly overcooked) muffins are more likely than their counterparts who simply avoid dairy products to outgrow their dairy allergies. When Will was about five years old we joined our allergist's trial, and for the six months that followed, I baked and Will consumed one of these muffins EVERY.SINGLE.DAY. (To this day, Will's not a fan of muffins...) Glory be, this protocol worked, and so while Will still doesn't enjoy dairy and could probably be categorized as lactose intolerant, he no longer has an allergy to dairy.

At that time, we thought it unlikely that Will would ever be rid of his peanut allergy – they’re not commonly outgrown, and there was/is no proven “cure”. But about a year ago, our allergist, who continues to stay well-informed on all allergy-related research, approached me having determined that Will would be a good candidate for a new way of treating severe food allergies. Will and I stalled for months, for two reasons. First, participation would be a significant time commitment and we didn't want to begin the process just as Will was starting a new grade at a new school. And second, Will was scared, and we couldn't blame him.

But over spring break, we took the first step.

The concept is simple, really. Instead of completely avoiding the allergen, the participant reprograms their immune system to no longer recognize the allergen as a threat by exposing themselves (in a controlled environment and under a doctor's supervision - do not try this at home) to minuscule but increasing amounts of the allergen. In a nutshell (no pun intended), after the allergist determines a starting dose (think microscopic and diluted with water), the participant consumes the dose twice daily for a week. After a week, the participant returns to the allergist to try a slightly higher dose. If they can tolerate the higher dose, they continue the process at the new dosing level; if they can't tolerate the higher dose, they continue for another week at the same dosing level. This continues week after week as the liquid doses increase and until the participant "graduates" to peanut powder doses. After peanut powder doses, actual peanut doses begin and continue until the participant eventually works up to - and then maintains indefinitely - 12 peanuts a day.

This process is frightening. We spent years protecting Will - and teaching Will how to protect himself - from this deadly (for him) food, and now we're asking him to trust us and introduce it back into his diet.

This process is time-consuming. We spent nearly five hours at the allergist on our dosing day, and now we will spend 90 minutes at the allergist every Wednesday afternoon for the foreseeable future. Even if all goes well, it will take months for Will to work up to 12 peanuts a day. And because of the rules about when he can take a dose and what he has to do/not do afterwards, he has to wake up earlier and on occasion stay up later than he did before.

This process is daunting. If/once we work up to 12 peanuts a day, Will will have to maintain that dose indefinitely. 12 peanuts a day, every day, for years. He can't forget. I can't forget. (The hope is that dosing at the 12 peanuts level will eventually decrease the peanut allergy itself rather than just build up a tolerance, but there isn't yet enough long-term data available for us to know what will happen down the road.)

And this process is physically challenging, for Will. Every dose makes his lips tingle, his throat scratch, and swallowing uncomfortable for a few minutes. There are severe physical symptoms through which we would of course not continue, but these symptoms are considered mild and are not life-threatening...therefore they are Will's to own and mentally conquer. He has to convince himself that he can handle this short-term but regular discomfort in this quest for a less scary and restrictive life down the road.  

So here we are, only two weeks in but feeling cautiously optimistic. We have no guarantee that this protocol will work, but for the first time since that day many years ago when we learned how dangerous peanuts are for Will, we have hope that someday he will be able to pack this adorable little t-shirt away.

A couple of interesting allergen-related posts from years past:

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