Tiny Little Mother MInd™ Report

Sophie walked down the street today -- nearly the whole block -- and back to our house, leaning only lightly on my arm. She hasn't walked that far in months, and I'm going to say that it's because she has been taking CBDA for over a month (since her last hospitalization), and I've reduced her Onfi again. She's now down about 50% from the amount she was taking last year at this time, and we're going to keep on going.

The backdrop to this is, of course, the recent roll-back of Obama-era marijuana rules, a "return to the rule of law" according to Attorney General of the Disunited States of America Jeff Sessions who is, in my tiny little mother mind,™ one of the biggest PsOS now running the country. He is correct that the federal rule of law maintains that marijuana is classified as a Schedule 1 substance and is of no medicinal benefit with that designation. Reader, I'm not going to write about this all over again. You can put medical marijuana or cannabis into the search engine over there on my righthand side-bar and pull up dozens of posts that I've written over the last five years or so.

What I am going to tell you about tonight is the SIT-U-AH-SI-ON we here in California face now that our state has passed a bill legalizing recreational marijuana.

Check this out:

Here's the thing. Sophie's medicine will be taxed at 34.5%. We will save 9.5% in taxes on her medicine if we make a trip to the Medical Marijuana Program in Baldwin Park, CA to get her a Medical Marijuana Identification Card (as opposed to just the regular doctor's recommendation), but we'll still be paying a 20% tax on her medicine each time we make a purchase. To put that into perspective, consider that the pharmaceuticals that have poisoned her for more than two decades are tax-free purchases. With legalization in California, cannabis is now subject to so many regulations involving licensing and shipping that we're sort of scrambling with shortages and access to products.

What does this mean? I imagine you're wondering, isn't making marijuana legal a good thing? Isn't that what we've been fighting for and working our asses off to get? Won't it be a wonderful thing to fill up the California coffers with cash?

Sigh.

Honestly, I don't think the California legislators or the general population that voted to make recreational marijuana legal give a flying foo-foo about cannabis as medicine. I imagine that most don't even believe the claims of medical cannabis patients or even experts. I had sort of a PTSD response to that tax chart the other day, when Dr. Bonni showed it to me. It reminded me of this drug Sophie was on back in the clueless days of the 20th century when I was desperate enough to try anything that The Neurologists suggested. The drug was called Topamax, approved for migraines in adult patients in late 1996,  but we gave it a whirl. Sophie quickly became, literally, anorexic as well as that neurologist-generated euphemism called irritable (meaning psychotic screaming all hours of the day). I'm only telling you this story because I can't tell you how many times I heard about people with migraines using it successfully and staying on it for extended periods of time because they loved the weight loss factor! Maybe only the seizure folks out there reading this will get what I'm saying, understand why I kind of broke out into a sweat when I looked at that tax chart. The tiny little mother mind™ is disturbed as well that after giving one mighty fine speech last night at an awards show, Oprah Winfrey is being extolled as a presidential contender.

Holy moley. This is where we are now?

Many do care, I guess, about cannabis medicine being affordable and accessible to everyone, but many don't. I imagine those legislators, with a few exceptions, just buckled to the Powers That Be, with dollar signs lighting their asses, and that's not a cynical thought. It's borne of experience. The whole shebang is a clusterfuck of gargantuan proportion.

Honestly, my tiny little mother mind™ is stumped.

Cannabis Oil Questions Answered

What do you think about the recently released study that GW Pharmaceuticals with 11 other epilepsy centers published yesterday about Epidiolex and Dravet Syndrome?


Enough people have highlighted and sent my way the "big" news that cannabis medicine helps children with Dravet syndrome, a particularly devastating type epilepsy. Dravet is what little Charlotte Figi has -- the Charlotte of the eponymous Charlotte's Web oil. You can look it up and find a lot of links, and evidently the story appeared on many television networks last night as well as in Canada.

Here's the link.

Yup.

Good news.

Raised eyebrows.

I'm not going to be doing any jumping up or down or anything, and it's hard not to yawn. It's even harder not to feel irritated, given all the goings on I've been privy to of late regarding The Powers That Be and cannabis medicine. It appears, to my tiny little mother mind™that the pharmaceutical company is looking to ram their drug through the FDA. But, hey, if their CBD drug helps some kid before that kid is subject to multiple drugs and other shit, then hallelujah.   

Hallelujah, too, for the families that can't afford the products out there already and for those who don't have access to cannabis because of the clusterfuck that is our government.

The train left the station years ago with many of us on board, and instead of grabbing our hands, most physicians and researchers chose to get on at a later stop. That's all right, I guess, unless they claim the whole thing for themselves.

My friend Chris said it best:

I know it's a step but it sure feels like an impossibly small step designed to benefit big pharma, which controls our country. It's jamming one piece of the plant into the western medicine paradigm, discounting those for whom massive doses of cbd don't help and actually harm and ignoring the medicinal value of the rest of it. I'm not holding my breath for a system that wants to control the product to allow for the individuation of mmj for each patient, which relies on individual observation and anecdotal evidence. That's not what the medical industrial complex does.

 Dr. Bonni Goldstein and two other doctors have also published a research paper that I find quite interesting, perhaps more interesting than the pharmaceutical company's one, because it references the extraordinarily wide dosage ranges of cannabis, as well as the fact that epilepsy patients might generally do better with access to a wider range of artisanal products rather than the single molecule compounds that pharmaceutical companies are developing.

Here's the link.

Mechanism of Action Unknown

Me, sitting on a stack of novels (my expertise), reading the insert to Sophie's Onfi (neurology's expertise)

So, I spoke with Karen, The Dark Overlord yesterday on the telephone to finish clearing things up regarding my recent conversation with The Neurologist. If you remember my post from several days ago, I was consulting with The Neurologist from Sophie's hospital room and asked her whether she might put her head together with Dr. Bonni Goldstein's regarding Sophie's care. I had -- erroneously, I guess -- thought that a consult between two MDs with separate expertise (one with Onfi and the other with cannabis) would be of benefit for their patient, Sophie. The Neurologist told me that she had received direct orders from her boss not to discuss medical cannabis and that she would, therefore, not speak with Dr. Goldstein. She wrapped things up by advising me to stop weaning Sophie from Onfi.

Post Marketing Experience

Later that day, when I'd recovered from the shock, I called the hospital where The Neurologist works to clarify this policy. I might have gone on a little rant with the nurse, but I used no curse words and was, in fact, as exceedingly polite as I've been taught since girlhood.  The next day I received a call from Karen, the Dark Overlord who, I learned, was not The Boss, but rather an administrative RN. She has a sweet voice and was as accommodating, let's say, as an insurance company representative or a programmed robot. You know the type: We understand your frustration. We understand that you're upset. We are working under the highest of standards. Per medical cannabis, it goes like this: We need more studies. It's an alternative treatment. Anecdotal does not mean evidence. Best practices. 

Mechanism of Action

Yesterday's second conversation with Karen, the Dark Overlord, clarified that The Neurologist, basically, lied to me. There is no policy from a boss that says she can't discuss medical cannabis with Sophie's medical cannabis doctor. Apparently, she does not WANT to discuss medical cannabis with Sophie's medical cannabis doctor. I told Karen the Dark Overlord that I found this not just incredibly frustrating but astounding and unethical. Karen the Dark Overlord assured me that the department is nothing but ethical. I truly do wonder what's going on, because I find it hard to believe that this doctor, with whom I've shared my daughter for over four years, would lie to me. I like this doctor.

I told Karen, the Dark Overlord, that a person like me who has been dealing with intractable epilepsy for more than 22 years doesn't really, essentially, care what the neurology community thinks about medical cannabis at this point as far as what I'm going to do with my daughter, but that hope never dies and that I still have hope that there will be some curiosity on the part of Sophie's specific health practitioners to learn why this medicine has helped her more dramatically than anything else she's taken for those 22 years. I also told her that I imagined a scientist would demonstrate some curiosity, specifically, toward Sophie's case. I also told Karen the Dark Overlord that I do care about younger families, and that families with children who have intractable epilepsy who are new on the path of discovery that multiple drugs are not helping but actually harming their babies and children will still be trusting enough to consult their doctors about medical cannabis. I believe fervently because of all the work (paid and unpaid) I've done with national organizations to improve the quality of life and medical care for children who suffer from refractory epilepsy, that trust between doctors and patients is paramount and that communication must be transparent and ongoing. I told Karen the Dark Overlord that that trust will be broken, that people will actually lie or fail to disclose that they are going to use medical cannabis (even though it's legal so far) when they realize their doctor has no interest or is being coerced to lie or influenced by pharmaceutical companies to lie or is -- let's be blunt -- intellectually lazy. Between this incident and the recent one where an esteemed pediatric neurologist who is being paid by a large pharmaceutical company doing studies on cannabis also tells his colleagues that it would behoove them to report their patients using medical cannabis to Child Protective Services, my trust is broken. Already shaken, my trust is irrevocably broken.

Pediatric Use (Sophie put on benzo at five months)

I told Karen the Dark Overlord that there were plenty of studies confirming that medical cannabis is an effective treatment for intractable epilepsy and that it was being held to an unethical and unreasonable standard given the drugs that my child and hundreds of thousands of others have been subject to for decades. She told me that she worked with life and death situations in the intensive care unit and wasn't familiar with these issues. I told her that these were actually life and death issues. Evidently someone pushed her INCREDULOUS button because she had never heard that.

Here's a very recent study, titled Efficacy of Cannabidiol in Children with Intractable Epilepsy from the esteemed journal Neurology. There are, literally, thousands of studies about the effects of medical cannabis on epilepsy that go back at least thirty years. What is going on here is harm.

The neurology community is doing harm.

Spinning

At the osteopath's office

The biggest spider that I have perhaps ever seen spun an enormous web that spanned about a quarter of the width of my backyard, and every morning I stood on the stoop outside my bedroom and looked at it, glinting in the sun. She sat in the middle of the web, waiting, I guess, for any errant creature to be ensnared. When I walked up to her, she sat there still, still waiting, and when I lay my finger on one of the anchor threads, she skittered up the vast and intricate highway and onto a cable that stretches the length of the backyard. This morning I stood on the stoop to see her, but she was gone and the web only a tattered thing, threads hanging.




This morning I struggled with Sophie or, rather, struggled with my despair as Sophie struggled with her seizures. It's been twenty-one years since it all started and nearly three weeks since Sophie's last hospitalization, and while her seizures are fewer and consigned to the early hours of the morning from, let's say, 4:00 am until 7:00 am when they come, one after the other, in her sleep, her days are spent very drowsy -- let's say totally drugged -- and she's unable to go to school. She is weak. She is on one drug -- a pretty massive dose, compared to where she was -- and CBD. I don't have any answers to the questions, so stop asking why? what do you think? what do They say? I don't know. I think nothing. They have no fucking idea.

I'm a giant spider, sitting in the middle of an intricate web that I've built over two decades. I'm waiting for an answer.

Here's what They did:

Sophie isn't having a lot of seizures, except for those few in the early hours of the morning (that reduce me to a raving lunatic, especially when I find her soaked in her bed and must strip it and her, even as she seizes) because she is drugged with Onfi, a powerful and dreadful benzodiazepine. She was, basically, ripped off of Vimpat, an anticonvulsant that she'd been on for over eight years (a small amount in the end, but a small amount of an AED is still an amount that the brain is accustomed to accommodating), but only after being infused with a giant dose of Vimpat (despite my misgivings about it causing hives) that was followed by giant hives covering her entire torso. Later, in consultation with a dermatologist, the three neurologists attending decided that the Vimpat and the hives were coincidental but, curiously, on the discharge papers the drug was listed under ALLERGIES.  She was hooked up to an EEG for over six days, had copious blood work, lung x-rays and urinalysis, was declared normal on entry and three days after had a urinary tract infection that called for an antibiotic (the only time she has been on an antibiotic in the last fifteen years was last spring when she had her wisdom teeth out). One neurologist suggested the drug FYCOMPA as an option to replace the Vimpat, but I pointed out that it was known to cause homicidal ideation, and The Neurologist agreed that he'd seen pretty serious behavioral issues with it. I'm not going to make any jokes here, so just go back and read those italicized words, Reader, and come to your own conclusions. I'd love it, too, if you read this post from over a year ago.

Remember that I don't have any answers. I'm a spider who's been spinning a web for years and I'm now waiting. The other option via the Great Minds of Neurology was, of course, to ramp up the Onfi and work with CBD (remember that CBD and Onfi together show promise in seizure control), so just like some game contestant, I picked that door and took Sophie home, drugged out of her mind on a nasty benzo and an antibiotic. We had absolutely no resolution to the problems that brought us to the hospital in the first place, although I guess there's some comfort in knowing that Sophie is now officially off Vimpat. They (the Powers That Be/Neurologists) have no idea about the CBD and how and if it'll work. If you remember, THE PARTY LINE is not to pay any attention to CBD other than to give a few winks as a sign of tolerance, at least until the big pharmaceutical trials do their slow slog of research. This is because the federal government still has marijuana listed as a Schedule 1 substance, along with heroin and cocaine, and has determined that it has no medicinal value and therefore no public entity can study it. Sophie had nearly two and a half years with dramatic success on CBD, and at no time during that period did any neurologist express any interest -- real scientific interest -- in that success. So we're sent home, basically, on our own, to figure things out. 

Fortunately, I have Dr. Bonni Goldstein to help me figure things out. We're trying a new strain of CBD, along with THC, this week, and I'm hoping that I can reduce the Onfi at least enough that Sophie can live. Yes, I said live, because what she's doing now is not fully living. She is drugged. I took her to the osteopath this morning, and she lay on the table under Dr. Johnson's gentle hands and actually opened her eyes and smiled at the doctor. It was the first time she'd smiled in weeks, and I know she felt some kind of release. I was sitting on the edge of the table, my hand over her legs, and I couldn't stop crying, so Dr. Johnson stood up and brought me a tissue, told me that it was all right to cry. All will be well, she told Sophie, all will be well.







This is as long of a post as that spider and her web were big. I was going to spin into commentary on Drumpf and the article I read here about his nephew who had infantile spasms, the same diagnosis as Sophie's back on that dark day in June of 1995. I was going to rail about health insurance, how premiums are going up not entirely because of the Affordable Care Act (as the conservatives say) but because our for-profit health insurance industry is utterly dysfunctional. This is my web, my rant and yes, it all goes together. Watching Sophie seize, Drumpf's nephew's infantile spasms, the removal of his healthcare coverage, the expendability of the disabled in our culture, my own fatigue and burn-out despite a wealth of support, pharmaceuticals, party lines, obtuse neurologists stuck in boxes, friends and family who just don't get it, Sophie's seizures, and I'm skittering away, my web tattered.

Here's what we need:

1. The federal government needs to deschedule marijuana
2. Pump money into researching its use as medicine
3. Keep Big Pharma out of it by fostering equal partnerships between patients, farmers, interested parties and researchers
4. Expand the Affordable Care Act into universal health coverage
5. Vote for Hillary Clinton for President and hold her accountable
6. Kick Donald Trump and every single racist, misogynistic, homophobic, xenophobic person who votes for and supports him out of the country and into exile on Guantanamo or one of those for-profit prisons filled with generations of black men who were thrown into them for possession of marijuana during the fake Drug Wars.