This morning, I read comments in response to yesterday's blog post while hanging out with Susan during her one-hour post-dose observation period. (She took 75% of her dose, which involved cutting half of a peanut...well, let's just say approximately in half.)
One comment made me pause.
The writer has since deleted her comment, so I cannot quote it perfectly, but, what she basically wrote was, "It makes no sense to me that a food-allergic person would eat the same food they are allergic to the day after they had a reaction." (I'm pretty sure she said it more eloquently than I, and I wish she hadn't removed it, because I really did want to respond...especially after I had processed her comment for a bit.)
As I started to share my revelation with Susan, she started laughing -- cracking up, in fact, -- seeing where I was going long before I completed my sentence. And she couldn't wait to tell me about the sign at school -- which I am sure I have walked by more than once -- I've just never noticed it.
If this is truly the definition of insanity, is what Susan is doing
insanity?
One could certainly argue that it is.
And yet, in life, we often talk about those who do incredible things as having "insane" schedules or commitment or will -- athletes who get up at 4:00 am to practice, or run, or study...(or skate), attorneys who put together incredibly articulate, organized arguments (because they pulled multiple all-nighters)...an individual who lifts an automobile or other equally large, heavy object off another in a crisis...
Is the effort to find a treatment for Susan's peanut allergy any different?
(Perhaps Herculean efforts are needed...)
One could certainly argue that it is.
And yet, in life, we often talk about those who do incredible things as having "insane" schedules or commitment or will -- athletes who get up at 4:00 am to practice, or run, or study...(or skate), attorneys who put together incredibly articulate, organized arguments (because they pulled multiple all-nighters)...an individual who lifts an automobile or other equally large, heavy object off another in a crisis...
Is the effort to find a treatment for Susan's peanut allergy any different?
(Perhaps Herculean efforts are needed...)
We have always known that Susan's peanut allergy is very severe --
We were at the forefront of children with
airborne and contact allergies.
Way back when ...
(People -- even doctors and allergists -- didn't
believe us when we talked about anaphylaxis on-board an airplane, in a movie theater...at the gym while playing with a girl who had eaten a peanut butter sandwich on the way to class.)
Now...(unfortunately) they do.
Now, while Susan's story is sobering, she isn't the outlier she once was.
While I wish it weren't so for the countless children who live in fear not of the allergen they eat but of the allergen they cannot see -- the invisible danger that lurks on doorknobs, seat cushions, tables and desks...any public space -- the number of children walking this path of fear grows daily.
Now, while Susan's story is sobering, she isn't the outlier she once was.
While I wish it weren't so for the countless children who live in fear not of the allergen they eat but of the allergen they cannot see -- the invisible danger that lurks on doorknobs, seat cushions, tables and desks...any public space -- the number of children walking this path of fear grows daily.
I am reminded of early last summer, when Susan was struggling to tolerate her (very small) home dose of peanut protein.
I remember clearly being told that it was "impossible" that her gastrointestinal symptoms -- in addition to the intense fatigue, red and angry skin, moodiness and crusty yucky eyes...were related to her peanut dose.
Impossible.
I remember clearly being told that it was "impossible" that her gastrointestinal symptoms -- in addition to the intense fatigue, red and angry skin, moodiness and crusty yucky eyes...were related to her peanut dose.
Impossible.
Now, with a year of the PRROTECT study completed, we are told it is "commonly accepted" that these types ofsymptoms (can) accompany oral immunotherapy.
Susan is still an outlier.
As a dear friend would say, she is still a zebra in a medical setting where it is much better to be a plain old horse.
Susan is still an outlier.
As a dear friend would say, she is still a zebra in a medical setting where it is much better to be a plain old horse.
So, while we have been told that a minute variance in how much peanut protein is in Susan's daily dose should not matter, experience suggests otherwise.
We are posed to do something incredible tomorrow.
Just 72 hours after experiencing anaphylaxis to her 2000 mg dose (8 1/2 Peanut M & M's), Susan is going to take that same dose -- and hope (expect?) to tolerate it.
I have a beautiful half...
But in reality, nothing has changed, and yet we are expecting (hoping for) a different result.
Nice job splitting the m & m! Proud of you both. ;-)
ReplyDeleteBest wishes for tomorrow...thank you so much for sharing Susan's story.
ReplyDeleteI love you blog and wish Susan and family the best. You are all such an inspiration and advocate. but I had to give you this idea. Have you considered use a small saw to cut the M&M? The earlier pictures look like you were chopping them, but that last picture looks so clean that maybe you are already sawing them?
ReplyDeleteThank you mgs -- we've been cutting the M & M's -- first chipping away at the shell and chocolate to find the "seam" and then prying apart at the seam in the hope of preserving half the chocolate (as the peanut "skin" often sticks to the chocolate if it breaks away from the peanut). There doesn't seem to be a real science to this, unfortunately -- some halves are better than others, and sometimes we go through MANY to et to a good one. We're using a really, really sharp knife...
DeleteI am surprised to learn that in a clinical study, they allow consumption of M&M's. I would think that in a tightly controlled study, that the doses would have to be spot on accurate. Is it possible to tell how big the peanut is inside of the M&M, or are you able to weigh each one to determine the amount of protein Susan eats? Is there any possibility that the reaction could have been caused by more peanut than she had previously had? For example, maybe she ate 8 really giant peanuts that day?
ReplyDelete