As the summer draws to a close, the irony of what Susan is going to do today is not lost on me.
On June 30th, 2015 -- after an unplanned one-week delay -- Susan graduated from PRROTECT, a clinical trial that explored the efficacy of Xolair on rapid oral immunotherapy (read: desensitization) to peanut. While the clinical trial is still blinded (meaning we can only guess for now), I think everyone involved believes Susan received the placebo initially...
On July 5, 2015, Susan experienced an anaphylactic reaction to her peanut dose. This was a dose she had been taking since November of 2014, and after eight months, it was a dose she should have tolerated relatively easily.
Should is a key word, because over the course of the last eight months, Susan has now had three epinephrine-requiring reactions to her daily peanut dose.
The cause of each of Susan's adverse reactions during the clinical trial (and immediately following) are still uncertain -- we didn't do anything obviously "wrong" (we followed the dosing guidelines and observed the period of rest) and there was never a discernible pattern. While we will likely never know for certain, I have come to believe that Susan's seemingly random anaphylactic reactions to her dose are the result of a combination of many factors.
And honestly, in many ways, the cause of her anaphylactic reactions doesn't matter, for the bottom line is that they are terrible.
Scary -- every single time -- despite the fact that Susan has had more than her fair share of anaphylactic reactions during her enrollment in PRROTECT.
Can the same thing be life-altering again and again?
I actually think the same thing can be life-altering -- for every time Susan has had an anaphylactic reaction in conjunction with the clinical trial, we have talked about it, shared her experience -- privately and in public.
While I will never know for certain, I believe our openness has helped others understand the importance of early administration of epinephrine. If even one parent or caregiver does not delay in administering (or supporting self-administration of) epinephrine, Susan's experiences have been life-altering.
And, as Susan's mother, I now feel more certain than I ever would have that Susan will self-administer epinephrine should she need it.
Let me be clear -- there is still that niggling voice in the back of my head that wonders if Susan would really whip out her EpiPen in the middle of her English Literacy class and ever-so-calmly (or not) jab herself in the thigh with it, counting to ten while her teacher called the nurse and the nurse called 911...and hopefully in the chaos of it all someone remembered to call me...
But, after the last 18 months, I have more confidence that Susan would (successfully) self-administer epinephrine than I ever had before.
And -- that's life-altering.
for my husband -- for our family.
I now believe in the possibility of college, and travel, and a much more "normal" future than I ever envisioned for Susan. I don't know if Susan will ever travel to compete, but I no longer believe her peanut allergy will hold her back.
It has absolutely, positively without a doubt been more difficult to get to this point than I ever imagined, but I wouldn't do it any differently -- for as crazy as it might sound, every single anaphylactic reaction brought us one step closer to where we are now.
While I wouldn't suggest our course for anyone, as with anything in life, I honestly believe that, at least for Susan, practice has made more perfect. (That said, even during her last anaphylactic reaction, Susan didn't self-administer perfectly, but she got the medicine in...and that's what matters.)
Susan's first appointment with her private allergist, Dr. Bajowala, was scheduled for July 6, 2015 -- one convenient day after Susan's anaphylactic reaction to her dose (which she had me record so that she could make a short video about the importance of prompt administration of epinephrine as part of her Girl Scout Silver Award).
I still remember that day -- sunny, hot and humid -- a true Chicago summer day...followed by a violent thunderstorm which resulted in a twenty degree drop in temperatures across the Midwest. Even with the crazy weather, it still felt "early" in the summer to me.
Dr. Bajowala decreased Susan's daily peanut dose, from 2000 mg of peanut protein to 1500 mg of peanut protein. (Actually she decreased her dose from 2000 mg of peanut protein to 3000 mg of pure peanut, but that's...confusing, to say the least.) She also changed the timing of Susan's daily Zyrtec and added probiotics, Vitamin D and Cranberry Powder -- and instructed Susan to take her dose with applesauce every single time. Our consumption of GoGoSqueeZes has gone through the roof!
Over the course of the summer, Dr. Bajowala slowly weaned Susan off the Omeprazole she took for most of the clinical trial and increased Susan's peanut dose from 3000 mg of pure peanut to 3500 mg of pure peanut to 4000 mg of pure peanut -- a move that returned Susan squarely to where she was when the clinical trial ended. I was out of town with our son for those two appointments, so my husband took Susan. We have a few photos, but don't expect blog posts from those!
I cannot help but reflect that the summer has been easy...neither updose was of particular concern to me, as Susan had tolerated each of her doses without issue -- gone, even, is the hivey, angry looking skin Susan sometimes contends with.
I have a friend who counts days (she's impressively good at it, actually...although I have sometimes wondered if she uses some sort of on-line date calculator or something). I'm purposefully NOT counting days at this point, but I'm really pretty certain that Susan has now gone longer without an adverse reaction to a dose in...well, a very long time. Let's just say a lot of days. I'm pretty sure, in fact, that if one were to do the math (which I am NOT going to do, because I'm sometimes sort of superstitious like that), this is the LONGEST Susan has gone without an adverse reaction to her dose since...well, a very long time.
And now, here we are -- about to do something I once doubted would ever happen. Today, Susan is going to updose to 4500 mg of pure peanut, or 2250 mg of peanut protein. That's MORE than her daily dose for more than eight months of PRROTECT. That's more than Susan has ever eaten in a single dose (even the day of the 4000 mg peanut protein challenge during PRROTECT, which did NOT go well, her biggest dose was not that much).
Oddly, I'm a little nervous, but I'm not really scared about this updose.
(Although really, if I have learned anything from our journey in the clinical trial, I probably should be concerned, for if I did not know it before, I certainly do know now that nothing in life is certain.)
THIS updose is the beginning of the future.
If my theory is right, that the medications Susan was taking in an effort to stabilize her and allow her to tolerate her daily peanut doses in the clinical trial, were interfering with her ability to absorb and digest her peanut doses...
If my theory is right, that the addition of probiotics, Cranberry Powder and Vitamin D to Susan's daily diet have improved the functioning of her immune system...
If the prevailing theory in OIT is right, that when a subject is struggling to tolerate a dose, decreased dosing for a short period of time often enables the subject to resume dosing and move forward to an even higher dose without issue...
Today should go well.