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.

Cannabis Oil Questions Answered

What do you think about the recently released study that GW Pharmaceuticals with 11 other epilepsy centers published yesterday about Epidiolex and Dravet Syndrome?


Enough people have highlighted and sent my way the "big" news that cannabis medicine helps children with Dravet syndrome, a particularly devastating type epilepsy. Dravet is what little Charlotte Figi has -- the Charlotte of the eponymous Charlotte's Web oil. You can look it up and find a lot of links, and evidently the story appeared on many television networks last night as well as in Canada.

Here's the link.

Yup.

Good news.

Raised eyebrows.

I'm not going to be doing any jumping up or down or anything, and it's hard not to yawn. It's even harder not to feel irritated, given all the goings on I've been privy to of late regarding The Powers That Be and cannabis medicine. It appears, to my tiny little mother mind™that the pharmaceutical company is looking to ram their drug through the FDA. But, hey, if their CBD drug helps some kid before that kid is subject to multiple drugs and other shit, then hallelujah.   

Hallelujah, too, for the families that can't afford the products out there already and for those who don't have access to cannabis because of the clusterfuck that is our government.

The train left the station years ago with many of us on board, and instead of grabbing our hands, most physicians and researchers chose to get on at a later stop. That's all right, I guess, unless they claim the whole thing for themselves.

My friend Chris said it best:

I know it's a step but it sure feels like an impossibly small step designed to benefit big pharma, which controls our country. It's jamming one piece of the plant into the western medicine paradigm, discounting those for whom massive doses of cbd don't help and actually harm and ignoring the medicinal value of the rest of it. I'm not holding my breath for a system that wants to control the product to allow for the individuation of mmj for each patient, which relies on individual observation and anecdotal evidence. That's not what the medical industrial complex does.

 Dr. Bonni Goldstein and two other doctors have also published a research paper that I find quite interesting, perhaps more interesting than the pharmaceutical company's one, because it references the extraordinarily wide dosage ranges of cannabis, as well as the fact that epilepsy patients might generally do better with access to a wider range of artisanal products rather than the single molecule compounds that pharmaceutical companies are developing.

Here's the link.

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

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Cannabis Oil Question, #6

What do you do about Sophie's medicine at school and do you tell her school what she's taking?

You'll know later why I posted this daffy photo of myself that I took on hour five or so the other day that I spent in the Los Angeles airport, waiting for the Chicago airport to open. I loved those glasses, but they cost $65 which is ridiculous, even if they were vintage and everything's coming up -- oops, I don't want to give it away.

Here's what I do about Sophie's medicine at school. I don't give it to her at school but wait for her to come home to give her second dose. The first dose comes at 7:00 or 8:00 in the morning, about an hour or so before breakfast and before her other meds. The second dose comes about 3:00 or 4:00 in the afternoon, and the third comes at 10:00 at night when she's already asleep. That last dose is the most tricky, but so far we've been able to manage getting it in her mouth followed by a sip or two from her sippee cup and some gentle stroking of her cheeks to provoke the swallow reflex. She rarely wakes up.

Here's what I tell her school about the cannabis: nothing. I have told her teacher and aide, quite privately, that we're using it, but I haven't told the nurse or the principal or the vice-principal or the special education director or Oz Downtown because it's none of their business. You might raise your eyebrows at this, especially if you live in California and know about earthquake plans and emergency medicine supplies. I realized today that several months of the school year have gone by, and I haven't renewed Sophie's earthquake emergency medications in the school nursing office. To tell you the truth, I might have let the entire school year go by last year and not taken care of that either. That is wrong, I admit, and irresponsible. If there were an earthquake, and we were not able to get Sophie, she would be in deep shit without the regular administration of the two antiepileptic drugs that she takes, even though neither controls her seizures. Why is this? Because stopping these AEDS abruptly is very, very dangerous. Out here in earthquake territory, we are supposed to have water reserves for three days at a minimum and up to ten days. "They" recommend a week's supply of medication as well.

What does this have to do with cannabis? you ask. Here's the thing. I'm not worried about leaving cannabis with Sophie's school because going without the cannabis for a few days is unlikely to kill her. Yes, she might start having bazillions of seizures again like the old days, which is never very good, but she isn't addicted to the cannabis, and I can stop and start it with relative ease. Each dose is not harming her in unseen and obvious ways. That just struck me today, like an earthquake. I thought, too, about the questions I get from readers about how nervous they are to try cannabis, how they struggle with their disapproving doctors, how they wait for their doctors to lead their every single move.  I might get into trouble with this (not real trouble but more the kind of disapproval that some people have for those of us considered difficult, crazy or uncompliant), but I do what I think is best, and I don't give a flying foofoo what the doctor thinks (beyond the obvious). Twenty years has given me that confidence, and while I wouldn't ever tell someone to "disobey" their doctor, I seriously question the whole doctor says thing especially when it comes to cannabis.

Now, if I could only get up the nerve to do another wean of one of those AEDs, everything truly would be coming up daisies. In the meantime, I'm going to get those emergency supplies to the nurse at school. May there be no earthquakes when Sophie's at school, though. Please.

Other Cannabis Oil Questions Answered

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Cannabis Oil Questions, Answered #5

I just got my doctor to recommend CBD oil for my child that suffers from epilepsy. Does anyone know where I can get CBD oil today? 

That was actually a question posed today on one of the closed Facebook groups that I surf around on periodically. These groups have been a wonderful resource and community and stop short of being overwhelming, mainly because they're new and the threads are short and the members are all incredibly warm and friendly and open in sharing their experiences and knowledge. Back in the dark ages, when the internet was just beginning to emerge as a lifeline for those of us in the disability community, I would sign up for these things called chat groups and listservs on major epilepsy sites. You could pose a question and get an answer -- or five thousand answers -- and each would lead you down a tiny rabbit hole that led to a dark warren where gigantic rabbits with whiskers and red eyes would sit twitching. At least that was my experience. Eventually, I quit asking questions in chat rooms or listservs (why was there never an e at the end of that word?) and climbed up out of the ground and into the sunlight where I foraged around in doctors' gardens, stealing their vegetables, dodging bullets and withstanding the occasional rake to my head. If you fast forward seventeen or eighteen years, when I got serious about trying to find some medical marijuana for Sophie, I went at it pretty skeptically, my sense of urgency muted both by necessity (hopes dashed) and experience (feeling frantic and doing things frantically almost never works). Despite the necessity and experience, though, it was a damn slog that you've read about here, ad nauseum. Here's the thing, though: Sophie got Charlotte's Web in late December, and by January her seizures were dramatically reduced -- that's nearly nine months ago. In those nine months, several very cool Facebook closed groups have popped up with thousands of very cool individuals posting questions daily, looking for information. They get answers. There don't seem to be any rabbit holes, either. The fact that someone can ask the question above using the word today and get an answer, maybe even a product, is an amazing, wondrous thing. 

Honestly, this old bunny feels like there's hope, still, in ordinary people living extraordinary lives being able to make change without power or influence or vast amounts of cash.

It's only been nine months that this old bunny pioneer has turned to historian!

As for an answer to that question, there were several. Things are happening and happening fast. Email me, go to Realm of Caring or join one of the closed Facebook groups. I promise there are no twitchy, red-eyed rabbits down dark holes anymore.


Other Cannabis Oil Questions Answered

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Cannabis Oil Questions Answered, #4

What are the side effects of cannabis on Sophie?


I have no idea whether that video will actually work, but it's of Sophie at school yesterday, smiling as she bounces on a giant ball. She smiles more and more often these days, and I am guilty of not celebrating that enough. Since she's been on Charlotte's Web, her seizures have not only been reduced dramatically, but she smiles more. The smile is a genuine one of pleasure -- even mirth -- and is not related to feeling "high," although even if she were high (impossible with Charlotte's Web), I wouldn't mind. It's funny what scares people, what throws them off, and certainly the psychoactive part of marijuana is what is causing the greatest uproar in our country. While this isn't an issue with Charlotte's Web and other high ratio cannabis strains, the fact that people are worried about someone like Sophie possibly getting a little high, frankly, cracks me up.  I've been doing this a long time -- watching constant seizures, spending thousands and thousands of dollars on drugs for those seizures, drugs that I have injected into, squirted down and even forced into Sophie over two decades. I've also watched her have the most debilitating side effects that you can imagine: screaming for hours on end (called irritability on package inserts or you just have to see what your tolerance is, said the  neurologist early on in our journey), agitation, constipation, constant moaning and rocking, dehydration, anorexia, sleeplessness (we probably didn't sleep more than 2-4 hours in a stretch for the first eight or so years of Sophie's life), rashes, fevers, extreme hunger, impacted stool (from the ketogenic diet), dizziness, lethargy, headaches, nausea/retching, extreme drooling, and the mother of all side effects: INCREASED SEIZURES OR NEW TYPES OF SEIZURES! However anecdotal (and Lord knows, we hate the anecdotal!), it's my firm belief that some of those twenty-two drugs we tried taught Sophie's brain to seize in different ways, sometimes in worse ways -- a sort of circumvention that her brain, ever more clever than the drugs, managed.

Other than some initial drowsiness that we noticed in the first few months of her trial of Charlotte's Web, which we realized is the result of being on a benzo, we haven't noticed any significant side effects other than positive ones, like better sleep, a heightened awareness, alertness and attempts to vocalize. While there are some reports of children and young adults trying cannabis and seeing very little change or not being able to tolerate it, from what I've read and experienced in talking to many, many people, is that our positive side effects are quite common. Sophie is smiling more often and more purposefully for the first time in well over a decade. It's easily the best side effect of medicine that we've ever experienced!








Other Cannabis Oil Questions Answered:

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Cannabis Oil Questions Answered #3

How does Sophie take Charlotte's Web, and how much does it cost?

A lot of people don't realize that Charlotte's Web is a tincture with an olive-oil base and that it's easily drawn up in a small syringe and placed in the mouth. It tastes like olive oil with a faintly bitter tint, but I'm what you call a super-taster, so I imagine Sophie doesn't taste much of anything. The doctor recommends that it be given with either avocado or full-fat yogurt, but we don't always do this, either, as it's given three times a day, apart from Sophie's other medications. She gets it in the early morning, in the afternoon when she gets home from school and then around 10:00 at night. For the last dose, she's usually sleeping, but we're able to get it in her mouth without waking her up, and I've perfected the art, even, of getting her to swallow by rubbing her throat lightly or the sides of her face. I know that people give the medication through G-tubes, too.

As for cost, currently we pay $.05 per mg. I am averaging about $300 for a one-month supply. I know that's a lot of money, but to put it in perspective, I currently pay nearly $200 in co-pays for Sophie's medications, not counting the pharmacy deductible, and that's with private insurance and secondary Medi-Cal. Some of you long-time readers know that my co-pay for Onfi was nearly $500 a month until I got it from Canada for $61 and then found a non-profit foundation that picked up the co-pay. When we finally shed our abysmal Anthem Blue Cross policy and added Sophie to our Health Net plan (thank you, Affordable Care Act), we had to pay a slightly higher deductible, but they added Onfi to the formulary and picked up a greater portion of the Onfi cost (still hefty at $70). I pay $100 co-pay for the Vimpat. And we can't forget that those drugs do nothing for Sophie's seizure disorder, have horrible side effects and are a hellacious pain to wean.

I think I've said it before, but there's not much that I wouldn't do to come up with the money to pay for Charlotte's Web, given that it has cut Sophie's seizures down by more than 95%. You can go with that where you will.

Questions?




Other Cannabis Oil Questions Answered:

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Cannabis Oil Questions Answered, #2

What would be the effects of this oil if you were to take it?

Sophie in motion

An anonymous commenter yesterday left the above question with the following statement:

 There was a story on our local news last night (Philly area) about a family who had moved to Colorado for their daughter (they are from NJ) and the mom said [she] dreaded "the first day she was a little stoned." I know you have stated that the concoction made is low in the psycho reactive properties and felt that this woman just put back any progress made to legalize this drug!

First I'll answer the question because it's an important one, and then I'll discuss the rest of the comment, because it's actually even more important.  I have tried Charlotte's Web -- a small amount, because it's liquid gold as far as I'm concerned, and I felt, literally, nothing. There are trace amounts of THC in the Charlotte's Web oil, and from my limited understanding of medical marijuana, I know that it's a whole plant product and that each component is essential for optimal benefit. This means that a small amount of THC, the psychoactive part of the plant, is necessary, but because it's only a trace, it's nearly impossible to get psychoactive effects unless you were to drink vast amounts of it.

That being said, there have been times when Sophie seems "stoned" or probably more descriptively, sedated,  after taking Charlotte's Web, particularly in the early days when she was on a much larger dose of Onfi, the benzodiazepine that we are currently weaning. Many people have noted that the combination of cannabis and the benzos can cause sedation -- too much sedation -- and many have observed and noted that the children who do best on Charlotte's Web are clean of benzos. This hasn't been the case for us, though. Sophie is still on a considerable amount of Onfi and has had a dramatic decrease in seizure activity (95%). We hope that as we continue to wean her from the Onfi and then the Vimpat, she will improve even more.

That being said -- and perhaps this post could be sub-titled That Being Said -- the oil needs to be shaken quite vigorously before it's drawn into the syringe and given. The mixture is oil-based -- things separate, it's darker, it's lighter, etc. When Sophie has appeared "stoned," I figure it's because she actually received a bit more THC in that dose than she might have if I'd shaken it better or it's from the bottom of the bottle and a tad more concentrated.

That being said, I am of the mindset that being a "little stoned" is not something that anyone should be concerned with as far as our children are concerned. Given the numbers of drugs that these kids have been on, the debilitating side effects, including dizziness, nausea, headache, sedation, agitation, depression, suicidal ideation -- the list goes on and on, not to mention THE SEIZURES -- being a little stoned might very well be a positive, if you get my drift. At the very least, it pales in comparison to the dangers of current anti-epileptic drugs that children and adults with refractory epilepsy have taken for much of their lives. As the mother of a child who has been on 22 drugs that have not helped her one iota but have, rather, caused her to feel, probably, like shit, for much of her life, I could care less if she feels a bit stoned every now and then.

That being said, I support the full legalization of marijuana, even for recreational use. I am not a pot smoker, have not, with the exception of that little bit of Charlotte's Web, smoked or ingested or otherwise partaken of marijuana in nearly thirty years. And thirty years ago, I never inhaled it, either.

That was a joke (the never inhaled it part).

That being said, I understand there's a real danger to going down the road of pure cannabis -- without THC. Keep thinking whole plant. Watch the videos I've posted about the plant. Educate yourself. I believe we owe the people on the front lines of legalizing marijuana, even for recreational use, enormous gratitude. They began this revolution, and I cringe when people say they don't support legalizing it. I feel like their reservations don't come from an educated position but are, rather, cultural and have no basis in science.

That being said, thank you for your question, Anonymous. It was an important one.