|photo by Lynn Johnson for National Geographic Magazine|
My friend Ray Mirzabegian is featured in an article about medical marijuana in this month's National Geographic magazine. Ray is the man who has a young daughter with refractory epilepsy, who drove to Colorado several years ago when he heard about the the Stanley Brothers and their cannabis oil. He learned everything he could about the oil, grows and makes it for a hell of a lot of children and adults here in southern California through Realm of Caring California. He's also one of the nicest guys on the planet, and I don't know what I'd do without him.
Right now, we've gone back to the original California Charlotte's Web that Ray makes and have stopped using Charlotte's Web Hemp Oil. While CWHO "worked" moderately well for Sophie, we've been struggling to find the same degree of seizure control and have decided to go back to the product we used when all the really good stuff happened. Sophie is, of course, on a little more than half of the benzodiazepine that she was on a year and a half ago, and if you read anything about withdrawing benzos, you realize it's a horror show. I've read adults report that they can experience withdrawal symptoms months and months after they're off the drug completely. If it's hard for you to imagine how difficult the process is, imagine peeling back your scalp and bathing your brain in a powerful narcotic twice a day for eight years. That would be Sophie. I don't think we can properly assess cannabis oil's true effectiveness until she is off the benzo completely, and that might take us another six to eight months. Then we've got to work on Vimpat, another powerful drug that she's been on since October, 2008 when it was newly approved for use in epileptics over the age of 17. Do the math.
In the meantime, though, she has some stunningly good days and no really bad ones. We are quite tolerant of one seizure or so a day, especially since they're brief and she seems to recover rapidly. A bad day might be several seizures in a day with drooling and clamminess, but they're not happening more than once or twice a month. Did you know that we haven't used Diastat, the rectal Valium rescue med, since we began the oil? KNOCK THREE TIMES.
I went to a party on Saturday night for a friend of mine and found myself engaged in conversation with a couple of people about our experience with cannabis oil. I told one man, a physician, that Sophie had been on 22 drugs in her twenty years. He said, That's impossible! There aren't even 22 antiepileptic drugs! I began naming them and then called it a day when he conceded that he hadn't heard of several of them. When I got home later that night, I wrote them all down and sent them to my friend to forward on to him. Here's what the list looks like:
Sophie’s Drug History 1995-2015
Micronor (progesterone to help mitigate the hormonal swings that exacerbate seizures)
IvIg (intravenous immunoglobulin, adminstered for ESES, 2010, 2013)
Ketogenic Diet (two six-month trials, 1995 and 1999)
What was interesting to me was when I checked on the drugs -- when they were approved for use by the FDA and for what age child. You know where this is going, right? Many of those drugs were brand-spanking new when we gave them to Sophie (like Vimpat, the one she's been on for seven years), several were only available through compassionate protocol or through pharmacies in England and Canada or Germany and many were approved only for use in children over twelve or seventeen, if at all. At no point was Sophie on one of these drugs at a time, but rather on multiple combinations -- a near constant titrating up and down and adding and subtracting for the first six or so years. I don't feel like listing the side effects of these drugs or even the reasons why we discontinued them. Think anorexia, thrush, extreme irritability, sleeplessness (for YEARS), severe sedation, dehydration, recurrent fevers, rashes, hallucinations, psychotic behavior, increased seizures, new seizure types, headaches, nausea, ataxia, excessive drooling, impacted stool, depression (yes, Sophie's neurologist diagnosed depression many years ago, so we discontinued the drug). Well, I guess I listed some of them.
I don't remember when, but at some point I just plain refused to add a third drug to a regimen until one of the two she was on could be weaned. Not a week goes by that I don't hear of kids on three, four, five and up drugs, still seizing. What the hell? When Sophie was about twelve, I refused to try any more new drugs unless Jesus Christ offered them to me. I firmly believe that relying on Jesus was no more or less scientific than relying on the old dart board that the epilepsy docs used. No one reported me to Child Protective Services. Sweet Jesus -- he never showed up.
Did I mention that at no point was Sophie seizure-free or even better? Can I emphasize enough that despite these various combinations of drugs/poisons and the good intentions of several superb neurologists and scientists, no one really knew what the hell was going on in Sophie's brain other than that it was supremely dysfunctional? Did I mention that during these nineteen years (and continuing today), Sophie received Chinese herbal teas and acupuncture as well as regular appointments with an osteopath, homeopath and nutritionist? Did I mention, too, that after two rounds of vaccinations, even as her immune system was fully compromised by high-dosage steroids, she was never vaccinated again? I firmly believe that without these complementary therapies, the refusal of vaccinations and a diet rich in whole foods, she'd either be dead or far more compromised than she is today.
Without Ray and all the people who are working so diligently to research cannabis, Sophie would also still be seizing.
*Please humor my repeating this stuff over and over if you've read it, over and over. I still get new readers and emails weekly asking for information. Every now and then, I feel the urge to evangelize a bit.