Pick Your Poison

This might be a record for my not blogging -- more than a week since I've bloviated about the various goings-on in my life and not for lack of them. Perhaps I don't feel like talking anymore about how Sophie has been struggling, how the CBD and the benzo and the sleep aid don't seem to be doing the trick, how I don't know really know what the trick is, anyway, but what I do know is that how many seizures is a relative thing, the counting of them, that is. A relative thing. Not something related to something else but rather relative in comparison. I scroll through my social media and between the kids dying (yes, dying) and the regular shit that is Terrible America, Sophie's three to five seizures (big ones) a day (yes, everyday) don't seem too bad. They're everyday or every day. If someone (Sophie) has anywhere from three to five seizures (big ones) a day, is anything working at all? Anyway? I have a friend who keeps meticulous counts of her son's seizures and is able to track, exactly, what affects them. He had seven in February, she might note, and after we increased his CBDa, only three in March. She agonizes over three, I think three! (Imagine three!) And I continue to draw up the syringes of benzo, syringes of CBD oil and CBDa oil (plunged into her mouth) capsules of sleep aid that I toss in there (her mouth) and the cup, quick, to her lips.

Swallow. 

So. The Nice Neurologist suggested we try either Depakote or Lamictal. They're very good drugs, he said. Has she been on them? He asked. I said, Oh, yes. She's been on both. The Depakote in 1995, when she was six months old, diagnosed for three months, drug number three. And it didn't work, so we took it right off and tried the infantile ketogenic diet next (plucked smack dab out of People Magazine, check it out), and then phenobarbitol and then vigabatrin, and should I go on? The Nice Neurologist said, Oh, and Lamictal? I said, Yes. Lamictal for about seven years. And it never worked.

Reader, I know you wonder why? and your why is why would you give a drug to your daughter for seven years if it didn't work? And I honestly don't have a sensible reason to give you, other than The Neurologist At The Time not having any other options and perhaps Laziness and perhaps because of The Difficulty of Weaning or perhaps The Odd Chance (A Neurologist would have suggested this one) that the drug (Lamictal) was keeping her to only two hundred seizures a day instead of five hundred seizures because -- it's coming -- it's relative.

Let's make a long story short. Let's make a deal. I picked Depakote. The reasoning: it's been nearly 25 years (!). We gave it to Sophie last Wednesday night and again on Thursday morning, Thursday night and Friday morning. She slept all day on Thursday, woke briefly for breakfast on Friday morning and slept all day Friday. She could not be roused for the entire day on Friday and had an alarming amount of congestion above her chest and below her mouth (in her throat) which was probably increased secretions. She could not be roused. The Nice Neurologist relayed through his nurse that we should stop the Depakote and talk tomorrow (Saturday), so while I generally worry about Sophie dying at least once a day, I worried all day, every moment, actually, even though relatively speaking, I am not scared of death.

Sophie had no seizures during this period, but, to be fair, she was practically comatose. Being seizure-free, I have found, involves a trade-off, and this is where the relative part comes in.

I and the Nice Neurologist had several short (not sweet) conversations over the next two days regarding what to do. What to do about Sophie? I think she'll need a smaller dose, he suggested, and I pointed out that the pills he'd prescribed have no score so they can't be cut in half. The liquid form! he said, and I'll call it in! I was walking down the street with Sophie in her wheelchair. She woke from her comatose state on Sunday, bright-eyed but batty, agitated, the drug clearing her system. I imagined a brain cleared of chaos and cobwebs but unsure how to proceed without either. I'm excited! The Nice Neurologist said. I said, Excited? and he said, It doesn't take much to excite me! and I thought, excitement is relative.

I picked a poison. Now let's see what happens.

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

Bring it On

Happy New Year, stalwart Readers!

It's as good a day as any to post a couple photos of Sophie, the source, the inspiration, for so much of my years, my art, my life.

I hesitate -- as always -- to jinx it, for isn't it the height of egotism to imagine that we have any hand beyond the obvious in the course of events even as we emphatically insist that we do?

Sophie is well. She hasn't had any seizures to speak of since we got back from the hospital. She's incredibly alert and responsive, although she still can't walk well and has lost a lot of her motor (both fine and gross) planning abilities. There's no miracle here, I don't imagine, or even conspiracies of the gods. There is the reduction of Onfi that I began again the day after we got back from the hospital, and a resolve on my part that is quite literally pulled up out of the deepest and darkest recesses of my being where fear masks mystery. There is the addition of CBDA that Dr. Bonni suggested* when I appealed to her to help, again. And again she helped and I leapt into the unknown and it seems that Sophie is responding to the cannabinoid.

What is CBDA? Cannabidiolic acid is a chemical compound found in the resin glands, or trichomes, of raw cannabis plants. "Raw" means unheated and untreated. It is fresh flower and leaves taken directly from the plant. It's the precursor to CBD. Sophie takes it in tincture form, a tiny, tiny amount, along with the CBD and ACDC that is part of her daily cannabis medicine regime.

This is what Dr. Bonni told me:

There are only a few studies of CBDA and of course none in humans (seriously, this has got to change), but it appears to be a "key" for the 5-HT1A receptor, one of our serotonin receptors. Studies show potent anti-inflammatory effects by blocking COX-2 enzyme that produces inflammatory compounds and anti-nausea/vomiting effects through 5-HT1A receptor. CBDA also blocked a certain breast cancer cell from migrating by blocking chemical signals sent by the cancer cells. Interestingly, the 5-HT1A receptor when stimulated can affect the vagus nerve. Maybe it is working for seizures as a natural vagal stimulator? Based on what we know 5-HT1A receptors do, CBDA as an activator of this receptor, should be anti-anxiety, anti-depressant, reduce fatigue, decrease appetite, decrease blood pressure and more -- maybe we all need to juice this plant with our kale!

I don't know about ya'll, but I'm going to consume less in 2018 and create more. I hope to be more patient with darkness, to not despair and be more grateful for light, not take it for granted because both are ephemeral.

Bring on 2018, Readers!

Happy New Year!












* If you haven't yet, order Dr. Bonni Goldstein's book Cannabis Revealed. It's an excellent resource for all things related to cannabis medicine. Disclosure: I get a small percentage of the proceeds as I helped Dr. Bonni with the stories of her patients.