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.
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?