Thursday, November 29, 2018

48 Plus Hours In: Hospital Chronicles, Meta

There's something sort of meta about that photo, isn't there? What does meta mean, anyway? Among, with, after. Something like that, I think. Sophie's brainwaves, Sophie and then, beyond, Sophie. Her face fascinates me.

I'm not sure what those eyes are telling me, but the word implore comes to mind, and those eyes both sustain and torment me.

We're sprung from the hospital and home again. Sophie's ESES is still pretty bad, but she has no underlying infections or thyroid problem or lung issues and the results of the autoimmune panel are still pending. Teenage Neurologist asked whether we'd consider high dosage steroids (it's one of the standard treatments for ESES), and I said no not ready. The other two times Sophie had ESES, the IVIG worked, and we still have room for it to work. I'm also going to fiddle again with the CBD and the CBDA and we're going to get this thing beat.

If you have a thing for science and immunology, put your thinking cap on and tell me something I don't already know. Here are a few things to ponder:

  1. Sophie began seizing within a couple of weeks of her initial infantile vaccinations, given to her to boost immunity and prevent disease.
  2. When Sophie was given ACTH, a high dose steroid, she got worse, not better. But she also had TWO MORE VACCINATIONS during the steroid wean (we knew nothing about anything in 1995 so didn't blink when doctor ordered four and five month vaccines. The only one they held was the pertussis because back in those days it was the live cell pertussis or what we called the DTP.)
  3. Whenever Sophie gets a high fever, she has NO SEIZURES. This is a phenomenon that has been noted in some studies and occurs in some people with autism as well. Fever is the body's protective immune response.
  4. The only treatments that have ever helped Sophie for any period of time are intravenous immunoglobulin which basically floods the brain with bazillions of antibodies that dilute out the "bad" ones that have "leaked" through the blood-brain barrier and are attacking her brain (this one is hard to wrap your head around as it's sort of meta-seizure, but just go with the flow) and cannabis medicine (potent anti-inflammatory).
If Teenage Neurologist can be one, so can you. Remember what meta means: 

Among, with, after


  1. I don't even understand how my own brain works and I sure can't understand why or how Sophie's brain works the way it does. I'm just so glad she's home again in her own colorful, cozy world that you have created for her. You are so right about her eyes. If I were her mother, I, too, would be sustained and tormented by them. All I know for sure is that she could not possibly have a better mother than you in all ways. Your intelligence and your love are what sustain HER.
    Medical science has not begun to figure out the connections between body systems. You're probably very much on to something with your observations about the immune system. I truly hope that what is now still so mysterious becomes better understood soon.
    Meanwhile, love to you both.

  2. I love her face too. Especially here. “WTF” comes to my mind when I look at her. And I agree, Sophie. WHAT THE ACTUAL FUCK. I’m so sorry babe. Very glad you’re all home.

  3. Glad to read you are back home and out of reach of teenage neurology "wisdom".
    I know even teenage neurologists have to mature through practice but seriously?

    Sophie's look spells meta for me, meta as in beyond/behind. Think physics and metaphysics. She is dignified.

  4. Your photos always show something of Sophie meta (Sabine's definition) all those screens of scientific computer data and neurexplaining. Sophie's face shows trust. I am convinced that your beautiful tiny little mother mind is absolutely trustworthy.

  5. I'm Glad you're back Home from the Hospital, as that is a difficult place for a Parent to be when their Child is admitted... and the Holidays are more Comforting at Home. First do no harm is always on my Mind when I am HAVING to seek any Western Medical practices... I'm not certain anymore that is the primary thought anymore of Doctors or Big Pharma, profits are.

  6. I'm glad Sophie is home. I suspect that's what those eyes are imploring: "Take me home." And you have.

  7. That last picture of Sophie feels so very peaceful. The colors, your beautiful girl.



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