Dispatch from the Revolution: Cannabis Update

Sophie continues to do remarkably well after nearly four months on Charlotte's Web. She goes weeks without any truly discernible seizures (she used to have from 1-5 tonic-clonic episodes and many partial complex/absence a day), and the breakthrough ones are mild and short. She has no more clusters of myoclonic seizures (they used to happen several times a day and lasted, sometimes, for 45 minutes or more). We have done three weans of her Onfi, the benzo that she's been on for six years. We've reduced the drug very slowly, about 33%, and the difficulties she had formerly, whenever we weaned a benzo, have just not happened. Yes, she's had some "bad" days when she appears uncomfortable and agitated. She has had some mild withdrawal seizures on around the tenth day of the wean, but for the most part she is good, and I attribute that good to the presence of cannabis in her system.

I listened to a podcast the other day of Dr. Orrin Devinsky from NYU. He was quite positive about cannabis and epilepsy, albeit cautious, and seemed far more understanding of families' desperation and desire to obtain the medicine for their children with refractory seizures than he was a few months ago when he wrote an Op-Ed in The New York Times. He even went so far as to state how "promising" the treatment looked. The Epilepsy Foundation of America has been surprisingly supportive of families (part of its charter and mission, after all), so I feel hopeful, too, about that. I type all of this, though, with reservation, because I also sense a growing rift between neurologists (The American Epilepsy Society), who remain obdurate and arrogant, and families, and this rift is sensed as a rumble, a muttering, an antagonism inherent, it seems, in the industry (because let's face it, medicine as it's practiced in this country is as much if not more an industry than a healing art), despite all the efforts for "family-centered care." I've heard of neurologists, still, completely disdainful of this therapy, towing the party line of testing, testing, testing, with a couple arrogant dismissals of "anecdotal" evidence.  And I've heard from several people whose neurologists are downright abusive, going so far as to call some parents uncompliant and reporting them to "authorities," making it difficult to get traditional medications for their daughter and other horror stories.

Anywho.

Here's Sophie's story -- call it anecdotal or call it Truth. It makes no difference to me what you think, what they think.

I know it's truth.

Sophie never had a day free of multiple seizures for the first nineteen years of her life and was subject to all manner of approved double-blind tested placebo controlled and studied drugs. Many of these drugs were not approved for use in children under the age of seventeen and most were not studied for long term use in combination with multiple other drugs. She was on nineteen different medications, was evaluated for surgery, had two six month trials of the ketogenic diet. She suffered from serious side effects from nearly every medication and endured considerable suffering when medications were withdrawn because of inefficacy (including one rare complication called pseudo-tumor cerebri -- look it up, not for the faint of heart). She took medications to mitigate side effects, went through several periods of anorexia and sat for hundreds of hours with an IV drip of immunoglobulin. She began taking Charlotte's Web in late December of 2014 and within a few weeks of treatment had periods of seizure free days for the first time in her life. Side effects noted were smiling, alertness and relaxation. When we knew things were looking "up," we began a slow process of weaning her from one of the two powerful anti-epileptic drugs that she's been on for years (and only on for years because we were afraid to withdraw them and put her through that shit). So far, she's off more than 30% of a powerful narcotic and continues to have large stretches of time free of debilitating tonic-clonic seizures, partial complex seizures and myoclonic clusters. We have not used Diastat, the Big Gun, in months. We will continue to slowly withdraw the benzo and then, hopefully, the Vimpat. If she continues to do well, the world is our oyster, no? Or is it the pearl?

How's that for anecdote?

UPDATE 2: A Medical Marijuana Update: The Behemoth Moves, God Said, "Let There Be Light" and Other Wonders

Wow Wow and More Wow:

Read this.

Of special interest, at least to me, is the addendum at the bottom of the article by Orrin Devinsky. He's done a bit of an about-face or, at the very least, recognized (by the groundswell of retorts, I'm sure) that the previous Op-Ed offended a lot of people and didn't properly address our community's concerns. That the Epilepsy Foundation of America came down on the side of the families and that Devinsky spoke of proof and compassion fills me with hope and wonder. I feel a bit as if the several hundred of us using Charlotte's Web and other high-CBD strains are at ground zero for what might very well be a revolution in epilepsy treatment.

On the other hand, don't think I'm some sort of naive lady, exulting in the capitulation of the Powers That Be. There's so much politics involved here, Big Pharma, the FDA, the DEA -- hell, the kinds of spats that happen on the cannibis groups on Facebook make my skin crawl. Who the hell knows how it will all shake out? We'll keep documenting the anecdotal evidence of Sophie's dramatic decrease in seizures for the first time in nineteen years (even as powerful AEDs are withdrawn!) and crossing our fingers and toes that the supply of Charlotte's Web is readily available to us.

In the meantime, I'm going to start learning how to grow and make it myself because I don't trust anyone.

And you can hold me to that.

On Devinsky and Friedman's Opinion Piece in the New York Times About Medical Marijuana

I'm going to fly through this post with my initial reaction to the New York Times' recent opinion piece on medical marijuana, titled We Need Proof on Marijuana. That means it's what I think on the fly after reading it, in light of my own experience giving Charlotte's Web to my nineteen year old daughter for the last several months. And since I'm a very fast typist and perhaps an even faster thinker, I'm going to slow myself down and number these thoughts. Here we go:

1. First of all, Orrin Devinsky and Daniel Friedman are huge in the pediatric epilepsy world, and I know both of them. I haven't seen either in as many years as I've lived in Los Angeles, but they are excellent doctors and good people.
2. I'm immediately put off by the line drawing that accompanies the article -- a Cure All Magical Elixir -- and its implication that there's something fishy going on.
3. The rest of the piece is patent bullshit and makes me despair again over the vast and seemingly irreparable rift between the professional epilepsy world and the rest of us -- the caregivers of these kids with refractory seizures.
4. My daughter has been on twenty drugs in as many years and not a single one of them has done anything to control her seizures or heal her in any way. In fact, most of them have caused her harm: discomfort, pain, irritability, anorexia, systemic abnormalities, headaches, ataxia, more and different seizures, nausea and the risk of death. In the short term and over the long term. 
5. On Charlotte's Web Sophie is now having no seizures for weeks at a time. For the first time in her life. Unless Sophie has been faking multiple seizures a day for her entire life, this is no placebo.
6. If Sophie were to die, five years from now -- hell, TWO years from now or even several months from now -- because of the "long-term effects of medical marijuana," I would be grateful that she had those days or months or years free of seizures for the first time in her life and in the life of her two brothers who have watched her seize daily for their entire twelve and fifteen years. I am decidedly NOT grateful for the life that the so-called "studied medications" have allowed her to live.
7. Devinsky and Friedman state their concerns for the long term effects of medical marijuana on the child's brain. I understand their concerns, and I understand it's in their interest -- and the hundreds of thousands of children with epilepsy's interest -- to study this plant, but when they write this: Where is the data showing that marijuana is effective for epilepsy? Although parents may report improvements in their children, it is important to remember that the placebo response is powerful, and the placebo response is greater in pediatric than adult studies. Before more children are exposed to potential risks, before more desperate families uproot themselves and spend their life savings on unproven miracle marijuana cures, we need objective data from randomized placebo-controlled trials I feel the condescension that I have grown to expect dripping from their mouths, the page, the screen, the universe they live in and have lived in as long as I began navigating it on June 14th, 1995. I have an unequivocal lack of confidence in that universe.
8. I am glad that Devinsky and Friedman are appealing to the federal government to remove marijuana from its draconian place as a Schedule 1 drug, but this train has left the station and, given the tone of this piece, frankly, I don't give a flying foo-foo what the Almighty Neurology World thinks.

I'm not just seeing. I'm spitting stars.