I can't believe I'm doing this. It goes against everything I have been doing for the past four years. Ever since his first allergic reaction, my priority in life has been to keep him safe from peanuts and tree nuts. Here we are sitting in this room and they're telling me that they are going to give him peanut flour. What kind of a mother am I?
I know what kind of a mother I am. I love my son more than life itself. There isn't anything in this world I wouldn't do for him. So when I'm faced with the daily danger and threat of accidental ingestion, I'm determined to find a treatment... but at what cost?
The Plan: Day 1 - Our first visit to the clinic. A relatively quick introduction. Kind, warm nurses and staff that greet us and calm my fears with their presence. I'm reciting all my questions in my head over and over. They're written on a piece of paper in my purse, but surely, there's something I have forgotten. In comes the doctor. He's an older man who instantly is kind and funny toward my son and makes him laugh out loud. I can see my son relax and feel at home in this rather sterile clinic room... but as I watch the doctor interact with my son, I too become relaxed and I finally have the feeling that we are in good hands. I hit him with all my questions. His answers are immediate and concise. This guy knows what he's doing. I tell him all my concerns, and there's plenty. Can we stop at any time without reaction? Yes. Can I give him Benedryl if he needs it without effecting his treatment? Yes. Does this put him at higher risk for reaction? No. His answers puts me at ease. So we start the treatment.
A small dosage starting at a fraction of a milligram of peanut flour was mixed with water to dilute and then added to my son's choice of food vehicle (this time blue Gogurt). He eats the three or so spoonfuls and she scrapes the edges of the cup in an attempt to get all of the peanut flour. He's eating the entire time - snacking on goldfish and pretzels. The consumption of carbohydrates is key to keeping his stomach settled during the ingestion of the peanut flour. Every half hour they double the dose.
At 1.5mgs he starts to complain that there is a "clump" in this throat. My heart sinks... we're only half way to the initial goal line and already a clump? He's instructed to take several sips of water and the "clump" is gone. Ok, I'm settling back in now. The trickiest part of this treatment may be keeping a five year old boy sitting still for our 6 hour visit. Keeping his activity low is key to avoiding a reaction. As the day progresses we start to feel like part of the family of this clinic.
Besides the obvious intention of seeking treatment for my son, something else happened that I did not expect. I met mothers just like me. Mothers who interrogate their children if they hear a slight clearing of the throat or spot a red hive on the skin. "Is that a hive? Is your throat scratchy?" I was brought to tears by the support offered by other mothers returning to the clinic. And for a little while I was able to talk with them about what it is like to be us.
Back in our room the doses kept on coming with no reaction. I felt hopeful and most importantly, in good hands. By the end of the day he ingested a single dose of 6 mg and a cumulative dose of 12 mg (equivalent to 1/10 of a peanut) without reaction. Success!
The following day, we entered the clinic like veterans only to get hit with a dose (no pun intended) of reality when his body rejected the maximum amount he consumed the day prior. We were visiting with new friends who were occupying the room next to us. Our boys, the same age had just started a game Candy Land when my son vomited. My instant reaction was to apologize and get him out of the room as quickly as possible. To my surprise, my new friend was comforting and accepting. She reassured me that this had happened to her son too and there was no reason to leave if he didn't want to. We settled back in to the game and our conversations, learning along the way that there were so many others out there that share a life similar to ours.
As a result of rejecting the peanut flour on day 2, he was lowered to a 3mg dosage for the first two weeks. This will be a slow process but clearly one worth the time and energy involved. Our goal is to gradually build his immunity to the peanuts (up to 394mg). And so the journey continues.
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