The whimsy of the picture belies the terror I feel at navigating the dark recesses of Sophie's brain. I am not a scientist.
Sophie's gotten four four-day treatments of IVIG, in September, October, November and December. She responded terribly in the weeks following her September and November treatments and very well after her October and now December treatments. The infusion is a blood product, and we work with a pharmacy that gets it from a pharmaceutical company. In early October, the pharmacy told us that the product they'd sent in September was "out of stock" and that they would be substituting an equivalent product. They assured me of the "equivalence." The same thing happened again in early November when the new product that we'd gotten in October was "out of stock," so we went back to the one we'd used in September.
Remember two things:
- Sophie did not respond at all after her first infusions in September. In fact, she got worse over a few weeks. We attributed that to the viciousness of ESES and to the fact that having millions of antibodies infused into one's body was a significant thing, that her body would adjust, that it had worked before after a few times, that sometimes things get better after they get worse.
- I am not a scientist or a doctor. I have a tiny little mother mind™ that sometimes doesn't kick in right away.
While in the hospital the other week, we learned that Sophie's ESES is still there, which wasn't surprising because -- well -- she was in the hospital and she had a terrible month. But while in the hospital, the pharmacy called me to set up the medicine to be delivered for the December infusion and told me, again, that the product we'd used in November was "in stock," but there was only a low supply of the stuff we'd used in October. While in the hospital, I wracked my tiny little mother mind™ over what the hell is going on with Sophie's brain, and it occurred to me that perhaps the product we used in October was the one that really helped Sophie so that we should try it again to see in our own little tiny little mother mind™ experiment whether it would help Sophie. I asked the pharmacist whether there was enough of that October product for Sophie, and she said there was more of the stuff that we'd used in September and November, but I insisted and she said okay. So that was that.
It's now a good week out from the December infusion with the same product as the October infusion, and do you know that Sophie seems to have turned another corner? I don't want to jinx it, but we have to make sure that we get that same product again. Here's my English and French Literature brain at work, because I'm not a scientist: Sophie's brain is exquisitely sensitive, and something about the particular combination of antibodies in the product she got in October and December relieved the ESES. Something about the particular combination of antibodies in the product she received in September and November worked negatively and plunged her into near-crisis.
This is sort of a boring post, isn't it? I thought about providing a link to a news article I read recently regarding drug shortages and pharmaceutical companies, but I don't feel like looking for it right now. I'm living it -- what the article is about -- right now, along with living this other weird life of relentless vigilance. There's an article about that somewhere, too, and it's about some "groundbreaking" work or study on PTSD and parents of chronically ill children or those with complex medical needs. These articles make me sigh, at this point. I point out that there's no post in the trauma, that it's chronic traumatic stress disorder. It's why I walk around during some periods with a whimper in the back of my throat. I lighten the stress and dispel the whimper by conjuring my Italian grandmother who walked around the house in her latter days, dressed in black, with rosary beads, muttering pray that I die, pray that I die.
So, the terror that belies the whimsy is this: This is the way it is. The detective work. The constant vigilance. The inability to go with the flow. The grace of discovery, even when your brain is better suited to metaphysical poetry and words than the intricacies of the human brain and chemical compounds or blood. The fact that we are on our own is both intensely freeing and utterly terrifying.
"Intensely freeing and utterly satisfying."ReplyDelete
Not the sort of conundrum one seeks in life, especially in situations like this one.
But I think that yes, you have figured it out.
And no, there is no "post" in the traumatic stress which disorders your existence.
I love the image of your Italian grandmother.ReplyDelete
It’s a mystery that you are unraveling. And sometimes the mystery unravels you. I’m glad to hear Sophie is doing better.ReplyDelete
You are her one common denominator when it comes to treatments and outcomes. You are her executive secretary that schedules and coordinate her meds and her care. I don't know what's going on in her brain, either, but I know that your are on the case, and you are the only reason she has come as far as she has. Deep bows to you, Elizabeth.ReplyDelete
I don't really know much about IVIG therapy but it sounds like you're right, the antibodies in the Oct./Dec. product are working. Is there any way to get more information about the two products? Where they're made? What specific antibodies they have in them?ReplyDelete
You're right about the chronic versus post traumatic stress disorder. although maybe it's the first trauma that then colors the rest of our lives and all subsequent traumas. I know I no longer trust nature, no longer trust that things will turn out, no longer trust so many things. I have a grandbaby coming in 3.5 months and I pray every night that he will be okay because nobody knows what happened to Katie. Which begs the question, how are modern doctors much different from witch doctors? Modern medicine knows more, sometimes even knows why, but still can't fix. What good is all this knowledge without concrete benefits? Does it make us better or worse off? Too many questions this morning.
Reading and don't know how to process. I wish you had experts with answers to trust and rely on to be honest.ReplyDelete
It puts my peeling DIY window pain(t) in perspective, anyway.
But also makes me recognise that I am nowhere near enough for my daughter in any way. There is so much I wish she would try but I can't get to her. You are brave, and clever and resilient as well as traumatised and terrified. And so is Sophie, who endures.
Why does life have to be so f'in hard sometimes? And for some, for so long? I'm not a religious person but this quote in an Anne Lamott book stood out as a thought I can have in response to a person or a situation, and so I send it out to you: "I pray for you to have everything that will make you happy." -KateReplyDelete
Absolutely right that there is no Post in the traumatic stress disorder of long term Caregiving. I think part of my Coping mechanism has been to try to make sense of what is happening and why so that I feel a measure of control about something that is so often out of my, or anyone else's, control. The Maternal Instinct is a powerful detection mechanism though, I never discount it since it has often served us so well. Glad to hear Sophie did have some positive results that seemed to show a distinct pattern that you could identify.ReplyDelete
you are an english and french major, a poet, a detective, and a scientist. most of all you are a mother, and that is powerful intuition, turbocharged by love.ReplyDelete
Tiny Little Mother Mind™ knows best! Seriously, there is such a thing as "too much fancy book learnin'" and sometimes I think these doctors can't see the forest for the trees.ReplyDelete
Your brilliant mother mind is totally correct. Check out generic drug substutition and variability and drug sensitivity on pubmed and you will see your observations confirmed.ReplyDelete