|Sophie and I in the desert, 1998, when I didn't realize that it would be another 16 years and as many drugs before we'd find relief from Sophie's seizures|
There's been a bit of hullabaloo in the medical marijuana world this past week, so I thought I'd chime in and give ya'll an update. The United States Drug Enforcement Administration announced that it will expand the number of growers of research-grade marijuana, but will not reschedule the drug. In case you've been living under a rock (and that's ok because, frankly, I wish that I lived under a rock in some other galaxy, far far away), marijuana was classified as a Schedule I substance in the last millennium, along with heroin and cocaine. That means the plant is deemed unsafe, highly addictive and of no medicinal value. That also means the process by which universities and other researchers can grow the plant and study it is still severely limited, and I won't go into how frustrating it will continue to be for people who live in states where it's still restricted to have access to the medicine.
Basically, if you're a Sophie living in a state that doesn't have laws making medical marijuana legal for epilepsy, you're screwed and will continue to be so until the plant is rescheduled. I don't feel like telling you all about the U.S. patent on the plant which is in, of all places, conservative Mississippi, but you can read about it on the CNN site or watch Sanjay Gupta's video.
At risk of turning this post into a rant, I think I'll just do a question and answer kind of thing and then go pour myself a shot of frozen vodka and scream up into the heavens.
1. What does this mean for Sophie and your family?
Well, not much in terms of access to the oil. We live in California and have relatively easy, albeit expensive access to the oil that has helped her seizures so dramatically for the past 2 1/2 years. We can't travel out of state with the oil, though, or send it anywhere. Thank god we live in California with access to much beauty, but it makes me sad that Sophie never gets to really go anywhere outside the state.
2. Aren't there some CBD-only laws that are being passed in various state legislatures and even the U.S. Congress? What do you think of those?
Yes, there is much lobbying and ongoing controversy concerning CBD-only laws in various states. I have decided opinions on this and will try to make it short and snappy. Some people deplore CBD-only laws, believing them to be ultimately detrimental to the ongoing efforts to make whole plant medicine legal in every state. Others believe that getting CBD products to those who need it is of paramount importance and that the legislation is just a baby step toward the larger goal of making medical marijuana (including THC) legal for everyone. While I understand the concerns of the former, I'm also acutely aware of the difficulties inherent in lobbying ignorant, biased and very conservative politicians. While we do so, people are literally dying or seizing their lives away with no opportunity to even try cannabis. What I've chosen to do is support CBD-only legislation at the federal level AND continue to yell, shout and write about the need for full, comprehensive whole plant cannabis legalization.
3. Why do you think cannabis should be legalized in general, including THC products?
Well, I think that can best be explained by Sophie's story. In December of 2014 Sophie was one of the first twenty families in southern California to get off the Charlotte's Web CBD waiting list and took her first dose of cannabis. That product was very high CBD and very low THC. At the time she was also on maximum doses of both Onfi, a powerful benzodiazepine, and Vimpat, a powerful anti-epileptic. She had been on both drugs for nearly eight years, and despite them being DRUG #21 and DRUG #22 that she'd tried, she continued to have as many as five tonic clonic (grand mal) seizures and hundreds of myoclonic clusters A DAY. She had never had a day without seizures in her life. She was nineteen years old.
Within a week of trying the high CBD product, Sophie had her first seizure-free days and within two months, she was going several weeks without a single one. We did not adjust her medication for nearly four months and then began to slowly wean her from the Onfi. What happened over the next several months was a lot of tinkering and adjusting to try to get the best response and the most seizure-free days, even as we began the arduous process of weaning her from one of the most damaging and addictive drugs she's been on. About six months in, we decided that we needed to add in a small amount of THC because we'd heard that some kids with refractory seizures needed it to get better control. That seemed to do the trick, so her regimen was the high CBD product three times a day with a small amount of THC added in at night.
4. Where are you now with Sophie's regimen and seizure control?
Sophie has about 90% fewer seizures than she had before she began taking cannabis in late 2014. She will go a few weeks with minimal seizure activity and then have a couple of "bad" days that are dramatically less "bad" than her best days pre-cannabis. She is on approximately 75% less medication, too. She continues to take a high CBD strain called ACDC three times a day at a very low dose (we figured out that she does better at a lower dose) and a bit of straight THC oil at night or as a rescue med on her "bad" days.
5. Why do you think the government is so stubborn about rescheduling marijuana?
You know what? It's so ludicrous, and I'm so sick of it that I'm going to call a spade a spade. I think Big Pharma has everything to do with this clusterf@*k, and that they want the whole pie. I think our legislators -- both right and left -- have been bought off in what we call "politics." I think it's about money when it isn't about plain old ignorance and even stupidity. I don't want to turn this post into a rant, so I'll leave it at that.
6. Do you think that even recreational marijuana should be legalized?
7. What do you think of Big Pharma studies and the general tone of physicians regarding the need for more research and caution?
I've always had a problem with authority and don't give a damn about what the medical community thinks. I'm not going to apologize for that. I long ago lost faith in Big Pharma and am perfectly aware that I'm unreasonable and biased.
8. What and who guides you then when you have to make changes in Sophie's regimen?
I trust in my own role as a mother/healer and in the wisdom and experience of many other parents of children like Sophie. I believe in the power of the whole plant, pure and simple. I have worked very hard to channel my frustration in how Sophie and tens of thousands of other children have been treated for decades into confident advocacy for cannabis, but it gets damn difficult sometimes, and I'm not entirely confident that we're going to "win."
Now I'm off to the freezer for that shot of vodka. If you poke your head into your freezer, you might hear my screams.