First of all, for anyone who is reading this, I feel like I should provide a nontelligent-people disclaimer: If you are looking to treat your child for their [allergen] allergy, I am *not* in any way trying to provide you instructions. I am only telling our story. It's a blog -- not DIY asphyxiation camp. *Do not* try this at home without the supervision of a trained allergist with appropriate monitoring and instructions. [Go ahead an imagine that I inserted any other bloated legalese to get the point across that you SHOULD NOT do this without appropriate medical supervision.] And um ... oh yeah, don't try this at home. I hope I'm not being unclear here...
The treatment we're starting is called Oral Immunotherapy, or OIT. I'll write more on this later -- but the basic idea is that you slowly (*VERY SLOWLY*) and methodically increase the exposure to the thing that's trying to kill you so that it doesn't kill you when you're exposed to it any more. In the clinic we're going to, kids who have been previously severely allergic to peanuts (among other allergens) have been eating handfuls of peanuts (or other allergens) without a problem six months after they started the treatment. But we're definitely on the very beginning side of that spectrum now, so that's where I'll keep my attention:
The first day starts with dosing her *every* 15 minutes for 5 hours, with controlled increasing doses throughout that entire time. So how slowly did they start? Well, I asked one of the nurses there for some concentration and volume information on what they did so that I could do my nerdy calculations (which is how I got the numbers above). The very first dose was the equivalent of the amount of peanut protein contained in 1/50,000th of a peanut. That's small. Way smaller than the amount of anxiety it causes for some people.
They diluted it into kool-aid. The nurses do the measuring and dosing. So basically, for a 3-year-old, it means getting the undivided attention of mom and dad and a great nurse who feeds you "medicine" that tastes like kool-aid all the time all day long while you get to read books and color and play with trains and watch movies! So, how'd she handle all of it? She kind of loved it! As she excitedly told us multiple times in 3-year-old-speak, "I never had someone to give me SO MUCH MEDICINE!" as she giggled and laughed and asked for her next dose. It really was a fun day, particularly for her, though we felt it prudent to emphasize to her that she only take medicine from mommy or daddy or a nurse.
There were other kids there who came in and out getting their "Escalation" doses -- where they get their dose increased for the next week or so until their next appointment. There was one other girl there doing their all-day-long first-day appointment. She was working on a milk allergy. Yes, I did the math on how much milk she had over the course of the day (Hey, we had the time...). It was 0.8 mL of milk in divided and increasing doses. That's about 0.16 tsp throughout the day (They're serious on this starting slow business). And again, we're talking equivalent milk protein, not necessarily milk itself if you want to get technical. And if you're curious for some validation on my numbers, after I made my calculations on the milk to turn it into an understandable volume of milk equivalent (the 0.8 mL for the day rather than X micrograms of milk protein), Dr. Jones came in. It went something like this abbreviated version:
Me: I'm trying to figure out how much milk she's [the other girl starting a milk allergy treatment] drinking total in the day today.
Dr. Jones: Well, you can't really calculate that because we're just giving the protein, not straight milk.
Me: Yeah, I'm trying to do the conversion to what the milk equivalent would be. Do you know what it would be off the top of your head?
Dr. Jones: Hu. Yeah, you could do that calculation. It's been long enough since we set this up though. I don't remember...
Me: My math says it's 0.8 mL through the day.
Dr. Jones: Well now I need to double check...
[He spends the next little while in the office running some numbers and then returns]
Dr. Jones: So on your calculations -- you were right. It would be the equivalent of the protein in 0.8 mL of milk.
[No, I didn't have him validate my peanut calculations. But I'm confident in them if the volumes and concentrations I got were right. And no, I'm not doubting them. And I'm the one writing this... so I get to choose what I say :) And I did it right first-shot once already. So I'm sticking with it and assuming that I'm right. And I kept my math to prove it.]
After the day at the clinic, and no signs of a reaction, we went home. We have this bottle of peanut kool-aid as our new twice-daily medicine of choice. We have an army of instructions for what to do for different scenarios, a small pharmacy to accompany it, as well as their staff on-call 24/7 for anything unplanned that affects this at all.
So far, so good. And so, we carry-on to next week when the dose gets increased.