Cannabis Oil Questions Answered: Tiny Little Mother Mind Report with Stanley Brothers Podcast Update

Each week the tiny little mother mind™ is consulted about various topics related to cannabis medicine. I thought that I'd emerge from my tiny little office and answer a question that I've been asked numerous times during the last few weeks as the news accounts of powerful legislators "evolving" and the FDA approval of GW Pharmaceuticals' cannabis product Epidiolex snowball into one big bag o' dollars and a confused consortium of doctors, incarcerated black people and other tiny little mother minds™ wonder what's up. As you can see by the above photo, I'm wearing my cannabis bindi to augment my tiny little mother mind™ machinations. I have also consulted with Dr. Bonni Goldstein because -- you know -- tiny little mother minds™ know when they need help and ask for it.

What's the difference between Epidiolex and Charlotte's Web Hemp Oil?

GW Pharmaceuticals has long been developing a cannabis-based pharmaceutical for the treatment of seizure disorders. It's called Epidiolex.* Last week, Investors Business Daily reported that the company's stock shot up to a months-long high because of the anticipation that the FDA will approve it for use. You can read about it here.

GW Pharmaceuticals basically grows the cannabis plant and extracts CBD from the plant -- extracts a single molecule cannabinoid and then adds in proprietary terpenoids (that they are not sharing with the public). The product is more than 98% CBD in an alcohol and sesame seed oil base with artificial (strawberry) flavoring. There is only a tiny trace of THC in the formula nor other cannabinoids.

Charlotte's Web Hemp Oil is a whole plant product that includes many full-spectrum cannabinoids as well as a better spectrum of flavonoids, terpenoids and some THC.

Reasonable people are going to agree that the more choices and options people have to treat themselves or their children, the better. If Epidiolex becomes available and works to control refractory seizures, then obviously that's a good thing. That being said, it's been my experience, as well as many, many other people's, that the best seizure control as well as anti-inflammatory and other medicinal benefits comes with the whole plant medicine that includes the wide variety of cannabinoids PLUS THC. That's been relatively easy for those of us in legal states -- we've added different cannabinoids (like the CBDA that Sophie is using) and, of course, THC (that Sophie is also using).

Plus, I'll just come out and say it: I don't trust the machinations of Big Pharma and dread their encroachment.

The tiny little mother mind™ doesn't have the time here on the blog to really explain or instruct you, Reader, about the endocannabinoid system, but I highly recommend that you read about it and educate yourself. The website www.projectcbd.org is an excellent resource, as is Dr. Bonni Goldstein's book Cannabis Revealed.**

UPDATE: If you enjoy podcasts, the Stanley Brothers (of the eponymous Charlotte's Web fame) who are a sort of Jesus and disciples for some of us in the cannabis medicine world, have a new podcast that airs today, Friday, the 27th. Their first episode features Sanjay Gupta and discusses the opioid crisis and cannabis as an answer to it. I know a whole lot about cannabis, as you know, but I learned so much more. This weekend, I believe, CNN is airing Part IV of its series Weed. The times are a changing. Let's hope that they change in the right way -- WHOLE PLANT CANNABIS MEDICINE that Big Pharma doesn't destroy.

Here's the podcast link:

Stanley Brothers Breaking Ground



















* My tiny little mother mind™is also a nerdy mind, and I love to pick apart the names that pharmaceutical companies give their concoctions. With the help of the internets I've parsed out Epidiolex:

Epi:   Greek, upon, on, over

Dio:  Latin, deity, god

Lex:  Latin, law, statute

So, are we safe, Reader, in interpreting this new drug manufactured by GW Pharmaceuticals as being Over God's Law? 




**Disclaimer: I helped Dr. Goldstein with the book and am given a small percentage of sales.

March Madness

The Department of Motor Vehicles, Los Angeles. CA 2017

My understanding of what's going on in this country is shrinking, and I find myself opening up articles, reading a few sentences and then sighing in exasperation or grimacing in disgust or taking in breaths to allay anxiety or rolling my eyes heaven-ward in bewilderment.

Are we supposed to understand what's going on?

I hate to say it, but I rely almost exclusively now on acronyms to express myself in this area. WTF?

I remember this quote by the great 18th century satirist, Jonathan Swift:

It is useless to attempt to reason a man out of a thing he was never reasoned into.

and

I never wonder to see men wicked, but I often wonder to see them not ashamed. 

We're all Gullivers here, methinks.

Sophie went back to school today for the first time in weeks, other than the day I brought her in for her birthday. I don't feel like going over what's been going on because, frankly, I'm so tired of the whole shebang, and I imagine you are, too. Suffice it to say that she's trending better even as we slowly wean her from the hideous benzodiazepine and supplement more aggressively with THC. I'm trending better right along with her because you know where she stops, I begin or where I stop, she begins and it's a fine, fine line. I also got acupuncture from our beloved Dr. Jin.

Yes. THC, baby. The psychoactive stuff that I myself have not partaken of since the halcyon days of college at the University of North Carolina at Chapel Hill. If I'd had any idea that I'd be administering a pale green gold oily version of it to my seizing and drug-addled daughter thirty-plus years later, I would have smoked more and studied less. Hell, I would have joined in with something more than tolerance when my boyfriend and his housemates watched the Tar Heels play basketball with the sound turned down and the bootleg Grateful Dead tapes turned up.

Anywho.

If you hear Old Racist Alabama Elf-Man Sessions or Old Up Big Pharma's Ass Georgia Cracker Price make any cracks about medical marijuana being a joke, tell them I'm going to beat the crap out of them in my mind. My tiny little mother mind™ knows few boundaries, is exasperated, disgusted, anxious and bewildered and would love a good red neck upon which to project its conflicts. Just a little March Madness.

Speaking of conflicts and the Tar Heels, did ya'll watch that game yesterday? It was a nail-biter that I watched with my sons and Sophie. March Madness for sure. This is a picture of when we had fallen behind Arizona after an early 17-point lead. I have quite effectively brainwashed my sons to be ardent Carolina basketball fans, and they were nervous wrecks.

Here's a video of the action when things got really tense at the end, right before I began to fold the boys' clean socks into balls, a task that I turned over to them when they were about five and seven years old. So many boring white socks I thought I'd go mad, wrote Virginia Woolf. I thought I was going to have a stroke or a heart attack watching the last few minutes of the game and even folded The Brother's laundry and smoked a few cigarettes in between bong hits.*

Between the not smoking too much THC in college, giving Sophie enough THC to help her brain today and parenting my boys to cheer ardently for a team that I love despite not knowing a damn thing about the sport -- well -- I'm going to humble brag here about my parenting skills. I am bewildered, to say the least.















* Just kidding. Virginia Woolf did not write that.

THC, Baby

Sophie in West End apartment, New York City
1997

The tiny little mother mind™in concert with several other tiny little mother minds™ thought that a small amount of THC, given during a particularly prolonged cluster of myoclonic jerks that might and probably would have culminated in a large and violent generalized tonic-clonic, might do some good.




Mark this space.















I'm going to admit that my hesitation in typing out anything positive is borne of a centuries old superstition that probably exists in most cultures and certainly exists in the southern Italian ones of which I am a descendent. By uttering something positive, I will jinx it and something bad will happen next. I think it might be called Murphy's Law for the WASPs among you. In modern times this might be called being a control freak or maybe even narcissistic and certainly egotistical and self-absorbed -- as if my every action and thought could influence the outcome, good or bad, or that it's all about me. That I don't believe I can jinx the good by typing out the bad is evident in the number of "bad" posts I have on this here blog, but remember my tiny, little mother mind™ and cut me some slack.

I know nothing and I'd bank on you knowing nothing, too, at least as far as why the hell Sophie's brain is so damn dysfunctional. I feel like I have to mark the positive, though, if I'm going to truly live in the present and be optimistic and cheerful (as per my I Ching reading).

Anyway, I gave her a little blip of THC during the cluster, and do you know that the seizures stopped? It wasn't immediate, and an argument could easily be made that they would have stopped eventually. That wasn't even the mind-blowing part, to tell you the truth. What happened was that the veil over her eyes was lifted and she looked clearly at me and smiled. She kept smiling, too, for the next few hours, off and on. She also had no clamminess and stopped drooling. Clamminess and drooling are two things that strangely literally break me. It's like they're superficial manifestations of the whole damn clusterf**k, and I feel broken, literally broken, when Sophie is clammy or drools excessively. I just know that she's deeply miserable and uncomfortable. After the couple of drops of THC, though, she looked brighter and definitely happier. Her palms were dry, and she stopped drooling. She seemed really, really comfortable.

Was she stoned? Perhaps a little bit, but that's okay.

THC, baby.

I write a lot on here about the effects of Sophie's seizures on me and our family, and I might not often convey how anguished I feel about the effects of them on her. I'm thinking of it, though, all the time. While there's a certain amount of dissociation for me which I imagine is a survival technique, the border between Sophie and me is very thin, a scrim, really. I believe that comes from the two of us being a kind of extreme parent and daughter. Sophie is completely and utterly dependent on me in the same way that she was as an infant. She's also powerfully herself, imbued with an evident grace and intelligence that people have remarked upon her entire life. This doesn't mean that our identities are blurred as much as it means they are fluid. That relationship is one that I know other mothers and sons/daughters like us struggle with -- it's the cause of much anguish, of marriages and family relationships broken, but it's also something precious and wondrous and rare.

I gave Sophie a bit more THC again later in the weekend, and the same thing happened. I might be on to something, and despite my superstitious nature, I'm going to keep you posted. Don't forget that we are on the frontline of this medical cannabis revolution and that the Powers That Be are taking their sweet time, mired in politics, money and party lines (we need more research). It's harrowing, but we on the frontline have to not only tinker with dosages and tweak products and strains but do it without the approval and sometimes with the indifference of those Powers That Be. Just the other day at The Neurologist's office, after suggesting for the 5 millionth time that I consider the VNS, The Neurologist said, I know you really only like to do the natural thing, though. It was tiny, but it was a sting, and given how difficult and complex this whole medical cannabis journey has been, I couldn't help but feel the great extent of my tiny little mother mind.™ The Powers That Be are going to do things in the way that they've always done them, though, so in the absence of real partnership, we're going to do it on our own. It's highly individualized. Ironically, though, the scrim between Sophie and me is probably the single most powerful help I get when I'm faced with crisis, and it works both ways. I know when she's comfortable, and I know when she's not.

THC, baby.

Cannabis Oil Questions Answered, No. 8

The early days, Sophie aged 5

Do you ever use straight THC as a rescue medication? Do you worry about her getting high?

Yes, I do. And no, I don't. In fact, just this morning I woke to the awful sound of Sophie seizing in her bed. The awful sound includes grunts and thrashing limbs, sometimes a scream. I dashed from my room to hers and was assailed, immediately, by the smell of seizure. A certain type of tonic-clonic seizure induces not just a pungent body odor but nearly slick-with-sweat palms and feet. I don't know what this is other than a response from the autonomic system, but it makes my heart sink because it often stays for days. I actually hate this state more than anything, other than the seizure itself. I have no idea why my reaction to it is so visceral, but I imagine it has to do with powerlessness. Sophie has been doing quite well with the new strain of cannabis. She's going many days and sometimes even more than a week with no big seizures. I also give her THC at night, but only a tiny amount. I'll leave a discussion of that for another post, but suffice it to say that THC is very necessary for most kids with seizures and is the reason why CBD-only laws are often counter-productive. Whole plant medicine, ya'll.

I've gotten off track, as usual.

The answer to the question is, again, YES. I give Sophie extra THC, straight, as a rescue medication and it works. This morning, after that first seizure she had another, and after that, when she was still in a post-ictal state which means there was a bit of jerking and weird posturing, I drew up a small amount of THC oil into a syringe, shot it into the side of her mouth and massaged her cheek. She had already stopped seizing, so I wasn't giving it to her in a status state, but do you know that the clamminess and body odor -- the things that would ordinarily persist for days after such a big seizure -- disappeared? Her palms were dry, no body odor and everything hunky-dory. No more seizures, either.

Put that in your pipe and smoke it.

As for worrying about her getting high, cue the Mrs. Braddock laugh.



















*My cousin Maria sent me the photo above along with the ones below. There's something so sweet and nostalgic about them. I hardly remember those days, but then -- I do.

Henry, 22 months old

Me and Henry, aged 22 months and my father's foot

Cannabis Oil Questions Answered, #7

When you give Sophie THC, do you worry that she is getting high?

No.

* That was the short answer. Here's the long answer. We are currently supplementing Sophie's cannabis oil with four or five drops of THC a couple of times a day. The THC seems to help with the Onfi withdrawal symptoms, particularly the tremoring that she was doing, over and over, and seemingly all day long. The tremors looked like seizures, even, as they were jerks -- hard ones -- in her arm and leg. When she sat on the floor, cross-legged, she'd bang her knee over and over on the floor. If you walked with her, she'd jerk her arm, over and over. They were not seizures, we found, through that godawful EEG. She doesn't do it anymore, as long as we give her those few drops of THC. As for getting high, if she feels a bit high, I really don't give a flying foo-foo. Somehow, we are supposed to accept the fact that every single one of the drugs that are given to our children from birth onward have hideous side effects, or are being used "off-label," or have an "unknown mechanism of action," yet are discouraged from trying a medicine that has thousands of years of history of use, reams of studies already done, no reported deaths and arguable long-term impact on the brain. 

I know, I know, I know. I've talked about this until I'm blue in the face.

An older man in the parking lot of Trader Joe's noticed the End Epilepsy bumper sticker on my car. He asked me what it was all about. I told him that my daughter has epilepsy and that I used to be on the board of the Epilepsy Foundation of Greater Los Angeles and that I supported its efforts to end epilepsy. I also told him that my efforts now were more for anyone or anything that supports the medicinal use of marijuana. He told me that he has an adult son who had terrible seizures throughout his childhood and how he wished they could have used it. He asked me whether Sophie was using CBD or THC or both. I said, both. Then we laughed at people's concern over whether an epileptic might get high with CBD and a few drops of THC. I wish! I said. In fact, I told him, I support the legalization of marijuana both recreationally and medicinally, and I'm tired of making the distinction.

Other Cannabis Oil Questions Answered

# One
# Two
# Three
# Four

# Five

# Six

How We Do It: Part LIV

No one really wants to rage, except when there's nothing about which to do so. My own simmers below the surface of things, beautifully contained. Savory. Hot springs. Remember my story of the neurologist who had called children's services to intercede when several people I know went against her wishes and put their children on cannabis? She also was involved in an alleged "medical kidnap case." She apparently rages, when there's nothing about which to do so. She wrote this piece, posted in the New York Times. I missed it because I was in the fairy tale woods of Hedgebrook, but I read it last night, felt the heat pick up.  I picked up Sophie's refill of Onfi today, paid $60 for six boxes of liquid benzo that will, hopefully, be one of the last batches before we've fully weaned her. We've been weaning the drug for the last eighteen months, taking a tiny bit away every six to eight weeks with a predictable array of side effects that hit after three days, ten days, three weeks and then off and on until we hit a steady spot and take away a tiny bit more. We're just over 50% weaned, and we've discovered that adding a few drops of THC each day helps the withdrawal symptoms. I think about the players when I swipe my debit card to pay for the Onfi -- the researcher that figured it out, the pharmaceutical company that made it, the government that approved its safety for use, the neurologist who ordered it, the pharmacist that scraped it into the bottle, the insurance company that determined whether it should be "covered," the parents that pay for it (pay whatever amount it's worth at the moment -- $1,000, $500, $90, $63, $60, free) then fill the syringe with it, the young woman who opens her mouth and takes it, and the brain that bathes in it. It all ends there, in the bloody, wrecked bath. I am reminded, again, of the difference between resignation and acceptance, where they fall on the continuum of rage. I am a master of muted rage, the good girl gone wild only in her head.

Fight the Power*

That's Sophie, and when her mind is clear and the seizures at bay, she can stare right into your soul. New readers should know that despite 22 medications and treatments, Sophie found no relief from tens of thousands of seizures over the first nineteen years of her life. When she began using Charlotte's Web in late 2013, her seizures lessened dramatically and that gaze became ever more penetrating and knowing. We're one of those families you've been hearing about, a family decimated by two decades of uncontrolled seizures, vicious side effects from powerful FDA and non-FDA approved antiepileptic drugs and then a radical reduction when cannbis oil is introduced.

Sophie is not alone. There are thousands of children like her, but they do not have access to CBD.

As her voice, I'm going to talk a little here about what's going on in Washington regarding CBD and hemp. There is a meeting on Wednesday, June 24th to determine the fate of CBD. This is the meeting of Senate members called the Caucus on International Narcotics Control. The Senate Caucus on International Narcotics Control was created to monitor and encourage against drug abuse and narcotics trafficking and to monitor and promote international compliance with narcotics control treaties. 

As you can imagine, that's one scary and powerful group of senators.

How would something so benign as CBD end up in their caucus? Here's a metaphor: We're all in a giant swimming pool, swimming in our carefully marked lanes. The Stanley Brothers are just one swimmer in that pool, along with countless other people growing and making hemp products. There's lots of room. Pharmaceutical companies, namely GW Pharmaceuticals, a British behemoth, has a lane, too. They've working on Epidiolex. That's fine. They should have a lane. The really extraordinary swimmers, the lane where all the action is, though, is not this giant pharmaceutical company. The lane that literally came out of nowhere is our lane, and it's made up of hundreds of families whose lives have been changed by CBD -- whether it's Charlotte's Web or any number of strains of high CBD/low THC products. Keep that image in your head.

Here are some facts:

1. CBD and Hemp should be regulated as dietary supplements due to the very low toxicity (LD:50 (lethal dose rating) of 1:40,000 compared to aspirin at 1:20). These products already fill our store shelves in all 50 states with known amounts of THC (less than 0.3%) and unknown quantities of CBD. 
2. There has already been research to establish that 1500 mg of CBD daily was well tolerated in humans.
3. 17 states have passed cannabis legislation since February 2014. That's 16 months. All but three of those are high CBD/low THC legislation. This is an example of the extreme need of this underserved population.

Who do you think is the strongest opponent of this process?

The strongest opponent of this process has been pharmaceutical companies, namely GW Pharmaceutical Company who stands to lose a large part of the market if CBD becomes a dietary supplement. In some states like Alabama and Florida, GW Pharmaceuticals is actually using state funds to pay for their expensive trials.

You do not need legislation to do a clinical trial. This could very well be a serious misappropriation of state and health department funds. Do you want your state paying the tab for a gazillion dollar company?

Here are some more facts:

1. GW Pharmaceuticals partnered with Bayer HealthCare, a subsidiary of Bayer AG. Bayer was on the original ALEC committee that introduced the original medical marijuana legislation back in the mid-noughties.
2. ALEC is the American Legislative Exchange Council, and is just one of the ways that Big Pharma lobbyists write and influence laws in their favor. 

Hmmmmmmm. 

Apparently, GW Pharmaceuticals is fine with cannabis legislation and efforts that would help them to line their pockets, but it's a stretch of the old imagination to imagine them wanting families to get access now to keep their loved one alive, especially if it cuts into their lane. 

We're talking about room for everyone, here, a lane for all swimmers. GW Pharmaceuticals wants the whole damn pool.

At risk of sounding like a conspiracy theorist, let me tell you something.

1. Parents' stories are being discredited. Just think of the disparaging remarks about placebo effects that Dr. Amy Brooks Kayal made on the Dateline special. We are, evidently, a bunch of crazy parents who can't properly count seizures and evidently have voodoo powers to regulate EEGS (that's sarcastic, of course).
2. Doctors who are supportive of CBD are discredited and frowned upon. There's a party line that is being pushed.
3. They're using propaganda to destroy the quality of the product, throwing around the term "artisanal" with the implication that we need the pharma model (despite the fact that we've been safely using cannabis for 1000s of years without that broken model)
4. They're attacking the safety of the product and of the compound in general.
5. In pushing for more research, they used unknowing and inexperienced families with promises of enrolling their children in the trials to push their agenda.
6. In pushing for more research, they're pushing the dosage of the product so high in trials that it creates negative events (so far, diarrhea). It seems to me that they need to prove that this can't exist as a dietary supplement.

Expect them to run their public relations and marketing campaigns (the pharmaceutical advertising budget is in the tens of billions) next on the basis of how wonderful their companies are, and insurance companies will follow suit, covering this "orphan drug" that will reap them untold profits.

In the proverbial nutshell, it looks like Big Pharma wants the whole shebang. It wants CBD to be a pharmaceutical. It's some scary shit.

As people who have been hurt again and again by a broken pharmaceutical system, we will not allow this to happen. You can't allow this to happen. If you think you don't care about CBD, that it's a limited component and that CBD legislation is destructive, think again. I hate to say it, but mark my words: these people will come after THC next. Can these powers be more powerful than the people? They are proving to be so.

We are Sophie's and countless other kids' voices, and we're swimming in a very big pool. We might very well get kicked out this week. Please help us fight for access. This is not about THC. That's another very worthy fight. This is about access to cannabis. It's about fighting the power. It's about doing the right thing. It's about being able to look back into your child's eyes and have them look right into your own soul.

Coalition for Access Now



*This post was co-authored by Heather Jackson, Executive Director, Realm of Caring Foundation