Tuesday Evening Tiny Little Mother Mind™ Peach Pie and Miscellany

In case you're wondering, Sophie continues to enjoy her new community-based adult day program. Today, she and a group of other clients went to the California Science Center. They rode the train downtown, and evidently Sophie loved the ocean room. Of course.

I took this picture this morning. I love Sophie's hands. They are so delicate and fine. I wish that she could use them more.

This sign made me smile and roll my eyes. It's hard to believe what's happened in the last five years in the cannabis medicine world. That being said, I heard about a neurological/pharmaceutical conference recently where the Powers That Be spent a good amount of time denigrating the CBD oils that we've been using for so long. The usual Two-Faced Neuro was there, sort of my nemesis if I really gave a shit anymore, which I don't. He was doing his thing, and this tiny little mother mind™ was doing hers.

Surprise, surprise. I hate to be cynical, but these guy and lady docs are about as cliche as the older man who has an affair with a younger woman.

Recently, a newspaper article touting the benefits of Epidiolex, the new CBD-only single-molecule pharmaceutical approved for Lennox-Gastaut and Dravet Syndrome, quoted a physician who said something to the effect of the "artisan oils" being used were "impossible to test." I don't mince words. What a load of crap. If crap could be, it'd also be transparent -- so clear that Big Pharma and the stooges in the medical world are busy, busy, busy undermining everything that's been done. Telling lies. Propaganda.

Don't get me started.

I made a peach pie today. It's one of the monthly offerings in my gig as baker for Everyone Needs Cake,™ in this case, pie. I took the skins of the peaches, Reader, and honestly? It was like slipping off a silk nightgown.

I tossed them in sugar and whiskey and let them sit for a bit.

I cooked the juices that collected after they sat for a while, added some cornstarch and cooked that up. Then I rolled out the pie dough that I'd made earlier and dumped the peaches in. I made a lattice with the other disc of pie dough and then I froze the whole thing for a couple of hours.

Here's the finished product -- perhaps a tad too brown in places, but my God! Those naked, cooked peaches sure smell good!

The Tiny Little Mother MInd™ and the FDA and Epidiolex

Today, the FDA announced its approval of GW Pharmaceuticals' Epidiolex, a cannabis-based medicine for epilepsy. As I've written countless times here on this blog, I do not begrudge those who want to try this concoction a fair chance to try it. If it works, fantastic. If it doesn't, you know where to go and what to do. What is that? You will probably need to jiggle around your CBD and add THC or one or more of the other cannabinoids. You will embark on a twisty path to healing. I believe this with all of my heart, but it's not a religion. It's fact and science and experience-based.

The reason the tiny little mother mind™ is writing this update is because of the following announcement by the FDA that accompanied their approval:

FDA is deeply concerned about the proliferation of unapproved CBD drug products marketed using unproven medical claims to diagnose, cure, mitigate, treat or prevent serious conditions and we’ll continue to take action against such products.

Cue the revolution. That's right. If the FDA or Big Pharma takes away our freedom to make, use, buy or otherwise give our cannabis medicine to our children or ourselves, there will be a revolution.

Epidiolex will cost between $2,000-$6,000 a month. If you have any experience with manufacturers and insurance companies and how drugs are priced, go figure that shit out. Contemplate that. Read my post from a few weeks ago where I discuss the difference between Epidiolex and the cannabis meds that many of us currently use.

My tiny little mother mind™has said it before over the five years that I and my compadres have been doing this, that there's a swimming pool here and plenty of lanes. Initially, we told the docs and anyone who would listen that they should get on the train because it was leaving the station. We were mocked and humiliated -- literally -- but we didn't give a flying foo and proceeded to save each other's children. We were told that we couldn't discuss cannabis medicine with our neurologists. We were reported to Child's Protective Services. We were obstructed over and over. That did not stop us.

Now, I'm telling you that Big Pharma should use their lane and not infringe on ours or take over the entire pool. 

I mean it.













*This has been a Public Service Announcement

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.

Happy 420 Day and Tales from the Vet

I've been talking about marijuana/cannabis for well over five years now, right here on the old a moon, worn as if it had been a shell. If you go over to the Looking for Something? search bar on the right-hand side of the blog and put in the words medical marijuana, cannabis, you'll pull up posts from 2008, even, when I first started reading about marijuana and pondered smoking it myself and blowing it in Sophie's face. There are posts documenting my walks up and down Melrose Avenue, looking for a pot doc to give me a medical marijuana card, posts documenting my resignation at being on a waiting list for Charlotte's Web, posts about my jubilation coming off the waiting list (one of the first 20 or so in California back in 2013), posts about our great gratitude for its success in giving Sophie the first real seizure relief in her life and, of course, numerous posts where I wrote -- or rather ranted -- against and about The Powers That Be in all the shapes they took, whether it was a doctor, a head of a non-profit foundation, a pharmaceutical company, a legislator -- even a relative or two -- who basically threw obstacles in our (and many other families') path.

Take a moment, if you have one, and put those words in the search bar just for me.

If you don't have a moment or are tired of me, please at least read the two links below, one a blog post from four years ago and the other an article that appeared in an investor paper this week.

Fight the Power.

GW Pharma Spikes on Likelihood FDA Will OK Cannabis-Based Med

I'm only saying this because it seems like not a single moment goes by in the day that I don't run across something cannabis/marijuana related, and it's all about the tide turning, the evolution of seemingly intractable folks in power, the swaying of public opinion and on and on and it just makes me feel all -- I don't know -- sad? Angry? Bitter?

Yesterday, I watched a bit of a live Facebook thing with old Bernie Sanders and young Cory Booker, touting some bill that is being introduced to Congress, and while I deeply admire Senator Booker for his progressive views, his eloquence and general decency,  I'm cognizant of his formidable obeisance to Big Pharma and it just makes me -- well -- sad. Angry. Bitter. I don't have anything to say about Senator Sanders, other than he appears to be still working doggedly for the people which is a good thing, but I'm tired of the dogged white man thing, and I'm not sorry about that, especially given the racial component of the whole marijuana legalization thing but that's a whole other story.

In the end, it's all about the money, isn't it?

What do I know? Not shit, apparently.

Scratch that whole post up there.

Read this article, now.

Let me tell you about what happened at the vet the other day when I brought our 14 year old poodle Valentine in for a general check-up. Valentine is still remarkably perky despite her many years, but she clearly suffers from arthritis and has lately also been needing to go outside about a million times a night and seems -- overall -- confused, as well as deaf as what do they say -- a post.

I am decidedly and unashamedly not a dog-lover, although I do have a great fondness for Valentine, and so after putting off the whole take her to a vet and spend about a gazillion dollars, I did bring her in. The vet said that she should probably go on an anti-inflammatory for her joints and that this might cause some side effects like diarrhea and vomiting and would cost about a million dollars, in addition to the $450 blood work and urinalysis that she'd already done and I felt like I might cry there in the smelly room with cat hair floating around and the kind vet assistant smiling benignly -- cry there not for the poor dog but for my old caregiver self who really just can't handle any more side effects of drugs so I said, brightly, What about CBD oil? It's a potent anti-inflammatory! And she said, Well, you know, it's a Schedule One narcotic, so I can't say anything about it, and we need more studies done, so I ran out of the room, pushing the benign assistant aside, dragging Valentine behind me on her purple leash out into the sparkling yellow Los Angeles light and just ahead of a dark cloud that opened up raining diarrhea and vomit all over the vet office.

Dear John Boehner,

My daughter, Sophie, one of the many people who has suffered because of your influence

Dear Mr. Boehner,

My first response to your recent "evolution" toward supporting the legalization of marijuana was two words strung together. The first sounds like truck and the second like foo. I'm aspiring to the elevation of language, though, so I will refrain from using epithets, however justified. When I recovered from seeing your picture (dated from 2015, and I frankly would have preferred never seeing your face again) above an article titled John Boehner's Marijuana Reversal, I learned that you had used Twitter to announce your startling "change of heart" regarding the legalization of marijuana. Here's your Tweet:

I’m joining the board of #AcreageHoldings because my thinking on cannabis has evolved. I’m convinced de-scheduling the drug is needed so we can do research, help our veterans, and reverse the opioid epidemic ravaging our communities. @AcreageCannabis

My second response was a physical one, a stomach-clenching, heart-pounding, limb quivering somatic blow-out that had everything to do with rage. My rage. I could have been the Bodhissatva of rage. A Bodhissatva is a being who is capable of reaching nirvana but delays doing so out of compassion for other suffering human beings. As the Bodhissatva of Rage, I am thinking of the grotesque numbers of people arrested for simple marijuana possession, the majority of whom were persons of color. You know the statistics, so I won't include them. I am also thinking of the legion of people, including children like my own, that have suffered and continue to suffer from debilitating diseases that can be treated successfully with cannabis. I'm thinking of the legion of children, in particular, with seizure disorders, who live in states stymied by federal law or who do not have access to the medicine that will alleviate their children's suffering and even save their lives.

I know there are some out there who are encouraged by your "change of heart," but as the Bodhissatva of Rage I am repelled and horrified. You worked incredibly hard during your entire career as an elected official in our government and one of the most powerful senators to block any kind of marijuana drug reform. You knew all the statistics, listened to and read all of the appeals. I appealed to you personally during my days as a cannabis medicine advocate. You rebuffed all those appeals, ignored the statistics, persevered in obstruction and helped to destroy lives and perpetuate some of the most vile racist laws and practices in our country.

One of your buddies had back pain alleviated by marijuana, leading you to see the light. I guess the tens of thousands of appeals from mothers of children with cancer, with autism and with seizures weren't enough. You evidently are also appalled by the numbers of people incarcerated in prisons for simple marijuana possession. You turned a blind eye to literally generations of young men of color for how many years, Mr. Boehner, before Acreage Holdings, an investment company with an enormous footprint in cannabis, brought you on? While you were in Congress, more than 420,000 people were arrested for marijuana possession, the majority of them persons of color. You knew that. How much money do you stand to make now in this new evolved venture?

The wheels of commerce are running beautifully, even as I type. Marijuana stocks are rising rapidly. So much money to be made. Pharmaceutical companies are rushing to seize the whole pie, pushing out those of us who have paved the way. Your evolution is disgusting, Mr. Boehner.

Truck foo.

With no due respect,

Elizabeth Aquino

The United States Medical System, Part Three in an Infinite Series told partially through photos

A friend of mine in the epilepsy community contacted me this morning from Canada. She had just learned that the drug Frisium (same drug as Onfi, a benzodiazepine that I've written about millions of times over the years as it's a hideous pharmaceutical with little efficacy for controlling seizures but is intensely difficult, if not impossible, to wean) is being discontinued. She wondered if the same stuff was going down here in the Disunited States.

Here's the announcement that the Epilepsy Toronto organization published:

Medication Alert: Discontinuation of Frisium Tablets in Canada

"Lundbeck has decided to discontinue the manufacturing of Frisium (clobazam) Tablets in Canada. They expect the current inventory to be depleted by the end of 2018.
This decision was not triggered by a safety issue, but rather is based on the numerous alternatives available in Canada. The decision was not triggered by a safety issue, but rather is based on the numerous alternatives available in Canada. Lundbeck is communicating this change well in advance in order to give healthcare professionals, patients and families as much advance notice as possible so that Frisium patients have ample time to successfully shift to an acceptable alternative."

My friend told me that she tried to get to the bottom of this issue by speaking with the company and then the pharmacist. Lundbeck told her that they "don't normally talk to the general public" and that she should speak to her pharmacist. The pharmacist knew nothing and said, "You should just call your doctor and they will prescribe something else." That evoked a little -- ok, a lot -- of sarcasm, because anyone who knows anything about Onfi/Frisium/clobazam knows that it's nearly impossible to wean it once you've been on it for more than a few weeks, AND there actually are no substitutes except for, maybe, Klonopin, which has its own set of horrors. I felt some small comfort in knowing that even in Canada, big pharmaceutical companies and pharmacies are as obtuse and insensitive as they are here. Canadians just don't have to pay for the bullshit, I guess.

See the ticket price of a 24-day supply of the drug Onfi that I picked up for Sophie just the other day. It's written very, very small up there in the right-hand corner. Sophie's been taking this drug in all of its iterations (Frisium, Onfi, tablet Onfi and liquid Onfi, non-FDA approved and FDA-approved) for nearly ten years. The cost for us has ranged from $550 a month to $70 a month over the course of years, and I've drug-muled it from Canada (you can find those posts if you go to the search bar and put in drug mule), gotten it from pharmacies in Germany and England, been reimbursed by non-profit foundations that are underwritten by Lundbeck (what a racket) and just plain coughed it up (the money, that is). Today, I can only get a 24-day supply because of the tight regulation of opiods and benzos, and since we use the liquid form (more expensive) and the pharmacy can't open a bottle to give a partial amount, we are stuck paying the co-pay every 24 days instead of once a month. Less drug, more money paid by us. Less drug given, more money made by insurance company, pharmacy and pharmaceutical company, I guess.

We have, above all, always been a slave to this drug and the cockamamie system because of its potency and powerful addictive characteristics. The drug has absolutely never really controlled Sophie's seizures. She was given her first benzodiazepine Nitrazepam at THREE MONTHS OF AGE on what was termed compassionate protocol because it was not FDA-approved. She was also given Ativan, Tranxene and Klonopin, none of which helped her and all of which were a bitch to withdraw. My tiny little mother mind™ wants to sit here and dwell on the fact that all of these drugs were and continue to be prescribed and given to little babies without any real knowledge of their long-term effects, but what's the sense of dwelling on The Great Unknown?

Exhibit A

It enrages me in the way that those of us who do this thing are enraged. We function quite well at a slow simmer.

Anywho.*

After my friend contacted me, I put on my Pharmaceutical Sleuthing Hat (see above).

I read about the Canadian shortage here. I called Lundbeck here in the Disunited States and spoke to a very chipper man who claimed to not know about the issues in Canada. He assured me that the drug Onfi had no manufacturing problems but that there was some rumbling about contracts with a certain distributor, Amerisource Bergen. There are, evidently, problems in the wholesale distribution area -- particularly with some pharmacies. Lundbeck is working on the problem but does not foresee any stoppage in manufacture of the drug. I wondered why the same drug, manufactured by the same company under two different names, was being discontinued in one country but not the other. The Chipper Pharmaceutical Dude had no answer for that. There was a point where he said that he'd speak with a supervisor about what was going on in Canada, and when I told him that I already had that information, he kept talking and talking over me, saying the same thing and for a split second that might have stretched on into eternity, I wondered if he was a real person or some kind of robot endowed with pharmaceutical intelligence. The chippery at that point gave me the creeps, so I refrained from asking him why my current supply costs $1584.65. I refrained from asking him what sort of collusion Lundbeck and CVS and Blue Shield have that they can't give me a third bottle to cover Sophie for more than 30 days so that I don't have to make a co-pay twice a month instead of once.

So it goes, as Vonnegut said so pithily.

I wonder what it would be like if Vonnegut were the Chipper Pharmaceutical Dude. My mind goes hither and thither, thither and hither. That would be Joyce.













* I use this word facetiously as I despise it. If you're a New Reader, know that. It belies the intensity of the situation described.

Cannabis and Pediatric Neurology: A Modern Day Fairy Tale with a Villain

Sophie and Me
La Jolla, CA 1999

Sophie was about four years old in that picture. I was 35, and it was the turn of the century and the millennium.

Once upon a time.

I sure wish that I could have had access to CBD oil back then.

I might have avoided nearly twenty years of frustration in controlling Sophie's seizures. She might have never become addicted to the benzo. We might not have had to try fifteen more drugs (she'd already been on eight in this picture). We might have avoided the second trial of the ketogenic diet which reduced Sophie to a pacing tiger in a cage waiting for her slice of strawberry embedded in a stick of butter, her stool impacted and no seizure relief, myself a fucked-up wreck of a woman. We might have avoided a broken leg, a broken nose, a broken hand, a split-open forehead and back of head, more than twenty stitches, permanent teeth knocked out, and a host of side effects: screaming, rigidity, sleeplessness, catatonia, anorexia, stomach pain, headache, fevers, rashes, hives, irritability, ataxia, dizziness, muscle weakness, blurry vision and cognitive decline.

Tonight I learned that another family has been threatened by a pediatric neurologist at UCLA. I'm not going to use his name, but I've written about him on this blog. I've also written quite recently about my own encounter with a bully -- Sophie's adult neurologist and her superiors who refused to discuss medical cannabis with us, even after we had been doing so for nearly five years. The irony of the recent scandal going on in the USC medical school is not lost on me. Look it up if you want to hear some serious shit.

But I digress.

This UCLA pediatric neurologist's  "area of expertise" is infantile spasms, the disorder that Sophie was diagnosed with in 1995. I will remind you that the treatment protocol for infantile spasms is nearly identical to the one we used twenty-two years ago with the exception of a "new" drug that is not new. It was approved by the FDA years after we used it. We tried it back in the last century at the urging of our very cutting edge neurologist because Sophie had already failed eight or so drugs in various combinations. She was nine months old. We got it from England, and we gave it to Sophie along with two other drugs. It didn't work and caused what I thought was psychotic behavior in a baby. Screaming for most of the day and night. It had not been tested, you see, on babies, and who knew whether that particular cocktail of drugs was causing more harm?

This drug Vigabatrin went off the market for a time because it can, in rare instances, cause serious irreversible vision damage. When your doctor prescribes it for your child's infantile spasms or seizures, you have to sign a waiver that you know about this risk. The other standard treatment for infantile spasms is ACTH, a high dosage steroid, administered by intramuscular injection. I believe brain surgery as a treatment has advanced somewhat, but -- it's brain surgery, and you have to be a candidate for it. You have to have a focus area to mess with in the operating room. Sophie did not have a focus.

90% of babies diagnosed with infantile spasms will have moderate to severe cognitive disability and refractory seizures. This number has not improved in decades despite "advancements."

This pediatric neurologist at UCLA is one of the several neurologists in the city, in the country, who are involved in GW Pharmaceuticals' studies of cannabis medicine and their cannabis product Epidiolex.

This pediatric neurologist openly tells his patients about CBD oil and tells those of us in the "veterans" community that he supports its use, but then he threatens families with Child Protective Services.

He is a Janus-like figure, or perhaps that is too kind.

He is two-faced.

We can only surmise that he and others like him want people to stop using what Big Pharma calls "artisanal oils" and start using Epidiolex. We can only surmise that they are  -- let's say -- "on the dole" with GW Pharmaceuticals.

Follow the money, as they say. Except that these are not crumbs laid to remember your way to safety.

I will say that he is a bully. I will say that there a lot of bullies in the neurology world -- both pediatric and adult. I understand that there is a lot of fear. There is liability, lawyers, corporate policy. Medicine As Business.

I will say that we do not trust these neurologists.

I will say that there are pediatric and adult neurologists who are not bullies and who are willing to work with parent experts in a manner that is family-centered. I encourage you to leave your pediatric neurologist or adult neurologist if you are being bullied. I encourage you to advocate for full and open communication with your physicians and demand that they do the same. If they can't work with you, and you are using cannabis medicine, then they should tell you so directly and give you the choice to leave and find another neurologist. I realize that this might be impossible, so do what you need to do. You are in charge.

I don't know if there's a happy ending to this story, or if there's an ending at all. It seems, sometimes, as if we are always beginning.








Feel free to share this post with anyone that might find it helpful. I'm sorry that it pertains primarily to legal states and particularly California, but as long as we have docs averse to communication, we're going to see similar crap going down all over the country as the laws are eased.



Here are your rights and some resources:

Where to Find Pediatric Cannabis Support
Is Medical Marijuana Legal for Children in California
Patients' Guide to Medical Marijuana Law in California

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.

Mechanism of Action Unknown

Me, sitting on a stack of novels (my expertise), reading the insert to Sophie's Onfi (neurology's expertise)

So, I spoke with Karen, The Dark Overlord yesterday on the telephone to finish clearing things up regarding my recent conversation with The Neurologist. If you remember my post from several days ago, I was consulting with The Neurologist from Sophie's hospital room and asked her whether she might put her head together with Dr. Bonni Goldstein's regarding Sophie's care. I had -- erroneously, I guess -- thought that a consult between two MDs with separate expertise (one with Onfi and the other with cannabis) would be of benefit for their patient, Sophie. The Neurologist told me that she had received direct orders from her boss not to discuss medical cannabis and that she would, therefore, not speak with Dr. Goldstein. She wrapped things up by advising me to stop weaning Sophie from Onfi.

Post Marketing Experience

Later that day, when I'd recovered from the shock, I called the hospital where The Neurologist works to clarify this policy. I might have gone on a little rant with the nurse, but I used no curse words and was, in fact, as exceedingly polite as I've been taught since girlhood.  The next day I received a call from Karen, the Dark Overlord who, I learned, was not The Boss, but rather an administrative RN. She has a sweet voice and was as accommodating, let's say, as an insurance company representative or a programmed robot. You know the type: We understand your frustration. We understand that you're upset. We are working under the highest of standards. Per medical cannabis, it goes like this: We need more studies. It's an alternative treatment. Anecdotal does not mean evidence. Best practices. 

Mechanism of Action

Yesterday's second conversation with Karen, the Dark Overlord, clarified that The Neurologist, basically, lied to me. There is no policy from a boss that says she can't discuss medical cannabis with Sophie's medical cannabis doctor. Apparently, she does not WANT to discuss medical cannabis with Sophie's medical cannabis doctor. I told Karen the Dark Overlord that I found this not just incredibly frustrating but astounding and unethical. Karen the Dark Overlord assured me that the department is nothing but ethical. I truly do wonder what's going on, because I find it hard to believe that this doctor, with whom I've shared my daughter for over four years, would lie to me. I like this doctor.

I told Karen, the Dark Overlord, that a person like me who has been dealing with intractable epilepsy for more than 22 years doesn't really, essentially, care what the neurology community thinks about medical cannabis at this point as far as what I'm going to do with my daughter, but that hope never dies and that I still have hope that there will be some curiosity on the part of Sophie's specific health practitioners to learn why this medicine has helped her more dramatically than anything else she's taken for those 22 years. I also told her that I imagined a scientist would demonstrate some curiosity, specifically, toward Sophie's case. I also told Karen the Dark Overlord that I do care about younger families, and that families with children who have intractable epilepsy who are new on the path of discovery that multiple drugs are not helping but actually harming their babies and children will still be trusting enough to consult their doctors about medical cannabis. I believe fervently because of all the work (paid and unpaid) I've done with national organizations to improve the quality of life and medical care for children who suffer from refractory epilepsy, that trust between doctors and patients is paramount and that communication must be transparent and ongoing. I told Karen the Dark Overlord that that trust will be broken, that people will actually lie or fail to disclose that they are going to use medical cannabis (even though it's legal so far) when they realize their doctor has no interest or is being coerced to lie or influenced by pharmaceutical companies to lie or is -- let's be blunt -- intellectually lazy. Between this incident and the recent one where an esteemed pediatric neurologist who is being paid by a large pharmaceutical company doing studies on cannabis also tells his colleagues that it would behoove them to report their patients using medical cannabis to Child Protective Services, my trust is broken. Already shaken, my trust is irrevocably broken.

Pediatric Use (Sophie put on benzo at five months)

I told Karen the Dark Overlord that there were plenty of studies confirming that medical cannabis is an effective treatment for intractable epilepsy and that it was being held to an unethical and unreasonable standard given the drugs that my child and hundreds of thousands of others have been subject to for decades. She told me that she worked with life and death situations in the intensive care unit and wasn't familiar with these issues. I told her that these were actually life and death issues. Evidently someone pushed her INCREDULOUS button because she had never heard that.

Here's a very recent study, titled Efficacy of Cannabidiol in Children with Intractable Epilepsy from the esteemed journal Neurology. There are, literally, thousands of studies about the effects of medical cannabis on epilepsy that go back at least thirty years. What is going on here is harm.

The neurology community is doing harm.

Ever Since 45 Came On The Scene, Sophie Has Been Terrible*

So, yesterday we had a little emergency, and Sophie and I were transported to a local hospital via ambulance. I feel strangely lethargic and unwilling to go into it, but Sophie was admitted under the suspicion of aspiration pneumonia. The hospital is a small one, around the corner and down the road from my house in the big shitty, and getting there was a story all unto itself, but, again, I don't feel like telling it. I will tell you that the whole time I was traveling in the ambulance and answering the questions of the paramedic, I was paralyzed with anxiety about the cost (even though we have private insurance and secondary MediCal) and that's because of the shit that's going on in our so-called "government" and the recent passing of what I call the Ass Hole Care Act (you're an asshole if you concocted it, you're an asshole if you voted for the people who concocted it and you're an asshole if you go along with it and we're all assholes for living in a country and accepting the whole cockamamie shebang that is considered "healthcare" in this wealthy nation). I feel positively unhinged of late, as I know many of you do, so riding in an ambulance seemed par for the course for the times and all that jazz. Cliche.

Anywho.

There's Sophie looking straight at you. She is actually stable now and does NOT have aspiration pneumonia as far as we know. Her x-rays are clear, and blood work is normal. We still have to wait on the blood culture to come back, but I am not convinced that she is sick and have therefore declined antibiotics other than the couple of doses she got intravenously when we first suspected the aspiration pneumonia. Lots of readers here have medical backgrounds, and frankly, so do I.

I suspect that the problem is neurological and related to the benzo Onfi that I've been weaning very, very slowly. The problem is that Onfi causes "increased secretions" as a common side effect, and despite Sophie being on it for nine years (yes, nine years), when we wean a bit from her body, it's as if the side effects increase as we lower the level. Does that make sense? Also, there's this metabolism thing that's going on with Onfi and CBD that I'll go into in a tiny little mother mind™ way later.

Are you still with me?

We had to go to this small hospital in my neighborhood, as I said, because of a fire department/too crowded "good" hospital/Los Angeles traffic reason, and despite the lovely nursing there, the doctoring was -- well -- abysmal, and I just don't feel like complaining anymore. I'm done. I know that I have symptoms of PTSD, and that while this isn't my "fault" so much, it's inevitable that the course my brain takes when I get near hospital settings and, particularly, hospital doctors, is fight and flight. It takes all of my formidable strength to stay calm, to acknowledge the bonfires spreading in my tiny little mother mind™ and then think of ways to calm them in a kind of reverse kindling way. The thought crosses through that I am just plain crazy and that every one knows it, that somehow my reputation as a crazy, non-compliant mother who has no trust in The Powers That Be has made its way from the dark days of the last century at New York Hospital to Columbia Presbyterian to UCLA in the new millennium to Glendale Memorial to that doctor's private practice, to USC Keck and now to Olympic (or is it Olympia?) Medical Center and up the little elevator and into the plaid pocket of the Doctor Without a Lab Coat Who Entered The Room of My Daughter, Didn't Introduce Himself and Proceeded to Examine Her Superficially and Speak Pompously About a Subject That He Has No Idea About, And That Is My Daughter.

Here I am, swinging from the odd little chandelier that hung from the ceiling in our hospital room. My friend Kari can attest to the truth of the above doctor, as she was in the room with me. She also took the picture.

Which do you think is odder? Me or the placement of the chandelier or -- hell -- the chandelier itself in a hospital room?

Please discuss chandeliers and hospital decor, particularly COLORS.

So, Sophie is stable. I'm going to ask to be discharged tomorrow. I had a conversation on the telephone with The Neurologist (who's from a different hospital that doesn't have chandeliers in the room) that was shocking and disappointing. I was hoping that she would have a conversation with Dr. Goldstein, the doctor who helps me with all things CBD-related. She had some interesting words about metabolism and the interaction of Onfi and CBD. Dr. Goldstein spoke to me via phone last night at 11:00 because she is a doctor with extraordinary devotion to her patients. She is, quite literally, the only doctor who helps me in any way beyond throwing drugs at my daughter and flippant remarks to the atmosphere that surrounds me. I said to The Neurologist, I'd really love for you and Dr. Goldstein to talk about this CBD/Onfi stuff because I trust you both and think we can help Sophie if we're on the same page. Would that be okay?

Do you know what The Neurologist said?

This is what she said, No, I can't talk to her. I'm sorry, but I have strict orders from MY BOSS not to discuss anything about cannabis with my patients.

I'm going to let you stew over that remark for a bit.

Remember that The Neurologist is an excellent one that has treated Sophie for over four years. Remember that she works for a very, very good neurology department at one of the best hospitals in California, if not the country. Remember that she is perfectly aware of Sophie's CBD regimen and has duly taken notes when I've paid my quarterly visits to her. Remember that we have no other options for Sophie for seizure control other than the lame medical device called a Vagal Nerve Stimulator, that I will absolutely not try. Remember that she generally asks no questions about the cannabis other than to note the dosage or any changes that we make. Remember that she told me several years ago that "the party line is we need more research." Remember that GW Pharmaceuticals is working mighty hard to get a cannabis product called Epidiolex through the FDA. Remember that the neurology community is strangely taciturn, if not downright obstructionist and two-faced with their patients using cannabis. Remember that the Attorney General of the Disunited States of Amerikkka is adamantly opposed to even medical marijuana and has said that good people don't use it. Remember that Dr. Price, the Health and Human Services Secretary is adamantly against medical marijuana and as effusively positive about the Ass Hole Care Act. He even lied about the Medicaid block grant stuff. Remember my harrowing trip in the ambulance with my PTSD. Remember these things as you muse on a physician telling one of her patients' mother that she has been ordered by her boss not to talk about cannabis.

These people do not give a flying foo foo about us.



















I think you need another picture.

I'm asking for discharge tomorrow, and we're getting the hell out of Dodge.












*My friend Cara noticed that Sophie did great for the last four years of Obama's second term and that these troubles began exactly when 45 became the nominee. In fact, Sophie was in the hospital for the first time in years during one of those dreadful debates -- I think the one where he lurked behind Clinton like a predatory rapist. Remember? Between the Ass Hole Care Act shenanigans and now this bizarro development with the FBI director getting fired and everything that's flying around about constitutional crises and coups and still people defending the Asshole in Chief -- well -- I'm adding Sophie's troubles to the list. It's what 45 has wrought. If I can be so bold as to draw a parallel, to make the personal political, I think we have to be strong. Sophie is strong. I am strong. We are all strong people. We have to resist.

The Tiny Little Mother Mind™ Reports

First of all, I'm going to ask you to view the following video, if you can.


https://www.facebook.com/DavidGeffenSchoolofMedicineUCLA/videos/1277904508994589/ 

If you can't see it, let me tell you what it's about.

Dr. Shaun Hussain, a pediatric epilepsy specialist at UCLA School of Medicine is a leading expert in the hard to control epilepsy syndromes category. That would include children who suffer from refractory seizures -- the seizures that medication does not help. Sophie was diagnosed with infantile spasms, one of the catastrophic epilepsies, when she was less than three months old. Dr. Hussain was probably in high school when I began injecting Sophie's thighs and arms with high-dosage intravenous steroids and then her first benzodiazepine which was, in the dark days of the waning twentieth century (1995), not approved for use in the United States. The drug was called nitrazepam, and it was given to me in a process called "compassionate protocol," a phrase that I can only throw my head back and laugh a long and bitter laugh over, today. 

Today. April 27th, 2017.

Today, when children are diagnosed with infantile spasms, they are still treated with much the same protocol, even though that protocol is not effective. Yes, new drugs have been developed and approved, imaging is more powerful and surgical intervention is more prevalent and sophisticated, but treatment is still not entirely effective, and a diagnosis of infantile spasms remains one of the most devastating pediatric epilepsies. Not a week goes by that I don't read about, receive an email from, a telephone call or a referral from someone whose child had infantile spasms, has infantile spasms or another epilepsy syndrome and who is struggling with constant seizures despite multiple drugs, often in combinations of three and four -- drugs with hideous side effects.

As most of you readers here know, over the next nineteen years after her diagnosis, Sophie was given twenty more drugs in various combinations, many of which were not approved for use in the United States, were only newly approved and little studied or not approved for use in children. I can honestly say that at a certain point, these drugs were prescribed in a way that I can only compare to a primitive crap shoot -- that the series of neurologists who prescribed them would often compare the situation to throwing darts, and that one or two of them openly admitted that they just didn't know how the drugs worked, why they didn't work and what to do, really, about Sophie. Sophie is not alone in this experience. Children like her are legion. When she was nineteen years old, I learned about The Realm of Caring* and the Stanley Brothers and put Sophie's name on a waiting list to try their high CBD oil. We began to give her cannabis oil called Charlotte's Web in late 2013, and her seizures stopped for the first time in her life for a period of weeks. In the nearly four years since, we have weaned her completely from one drug and are slowly weaning her from the benzodiazepine clobazam (Onfi) that she's been on for nine years, a drug so vicious that we might never be able to get her off of it, such is her dependency and the damage it's wrought on her brain. While she is not seizure-free, and there have been periods of great struggle, we achieve long periods of seizure freedom through careful tinkering with dosages and strains, the addition of THC and careful monitoring. Her quality of life -- and our family's -- is vastly better.

But this isn't about me.

The video. 

Dr. Shaun Hussain is leading the cannabidiol studies at UCLA and thus has ties to two pharmaceutical companies, namely GW Pharmaceuticals and Insys. Feel free to read up about both companies and what they're doing. The title of this Washington Post report should give you a taste: A Pharma Company that spent $500,000 trying to keep pot illegal just got DEA approval for synthetic marijuana.

In the video, Dr. Hussain makes some startling and very disingenuous remarks about cannabis medicine, including the horrendous last case history. It is literally rife with inaccuracies and bombast -- stuff that I won't deign to go over.  I participated in a panel "discussion" (quotes are because there was no discussion as the Powers That Be literally shut down we uppity folks with the tiny little mother minds™) with Dr. Hussain several years ago at a Brain Summit put on by the Epilepsy Foundation of Greater Los Angeles. The panel "discussion" was about cannabis medicine, and I spoke from a parent perspective. I wrote about it here as it was the proverbial straw that broke this camel's back as far as my trust and respect for the neurology world in general and the party line about cannabis in particular. It was insulting, demeaning and patronizing, and it continued even afterward in a series of emails with Dr. Hussain. 

 Toward the end of his presentation on the video, he advises the doctors in the audience that it would behoove them to report those parents who are using cannabis medicine with their children to Children's Protective Services. 

That might be the second straw that drives the broken-backed camel into the sand.

Here's my comment to the post and video on Facebook:

This video will probably be taken down, but before it is, take a look and a listen. These are the people -- DOCTORS -- with whom we must work as we navigate the medical cannabis world. Here's my comment, in case, it's taken down as well:

After parenting a daughter with a severe and uncontrolled seizure disorder for over two decades, I can't say I'm surprised, but I am appalled at the outright disingenuousness of Dr. Hussain's presentation here. The pretension, the condescension and outright ignorance don't enrage me as much as they confirm what I've learned as well about the neurology profession in general but specifically this subject. The laughter in the audience confirms, to me, that those in attendance, including the presenter, are nothing more than shills for the pharmaceutical industry. To speak of and warn doctors of their duties as "mandated reporters" is unethical and profoundly disturbing. I know for a fact that these same doctors are actively nodding their heads as parents navigate the cannabis world. You HAVE violated your Hippocratic Oath, quite effectively and systematically, over and over. I imagine this video wasn't intended for public viewing and that it will be removed, but there are many of us out here who will have seen it, transcribed it or will have heard of it. It doesn't surprise us, but it will further disintegrate the relationship between doctor and patient and foster increased mistrust toward those who are supposed to be serving us. Yours is a profession that will prescribe a powerful benzodiazepine to an infant, or any number of powerful drugs not studied in children yet remain obdurate about a treatment and a medicine for which there is reams of data and information. Shame on you.




*Realm of Caring is a non-profit foundation. The Stanley Brothers make Charlotte's Web. There are several other manufacturers of cannabis oil  using different strains of marijuana. Dr. Hussain, while joking about the good-looking brothers, neglects to differentiate between the two.

WOKE AF and What the Neurologist Says

Today was our quarterly visit with The Neurologist.  This is generally something I prepare for by downing three Bloody Marys and a chaser of frozen vodka (see the other 4,321,896 posts I've written on the subject. They generally begin with a photo of the waiting room wall with the CONQUER and TRIUMPH sign over the list of wealthy donors), but I'm not going to complain today because -- you know -- I'm grateful.

We've got health insurance (for now) and The Neurologist is very helpful as far as getting those pesky pre-authorizations that Anthem demands every month for the drug that Sophie has been on for EIGHT YEARS. When the Fresh-faced Pharmacist of the Month rings me up at the CVS, he inevitably asks me do you realize how expensive this medication is? And I say I do but tell me again how much it costs. And the young man says, Today it's $435. And I say that should be covered by insurance. And he says, Well, it needs a pre-authorization. And I say, Again?We've been getting this medication for eight years! And he says, It's a controlled substance, ma'am. And I say, Yes, I know that but I'm trying to grift the system here and keep the drug wars going by having benzo parties with all my friends. And he says, May I see your ID? Reader, I'll leave it up to you to discern which of those were alternative facts and which were the real thing, but I have digressed from my point that The Neurologist always helps me with The System and for that I am exceedingly grateful.

I'm also not going to complain about today's visit with The Neurologist because Sophie has been seizure free for more than three weeks. Yes. We have found the sweet spot, I guess, at least for now. I figure I can cover any jinxes by readily acknowledging that we might have a downturn at any moment. Downturns and rebounds are equal opportunity dictators.

I posted this picture of Sophie on Facebook this afternoon, and my feed literally exploded. Everyone is, of course, thrilled that Sophie is doing so well and many asked why? Here's why, I think, at least for now: Sophie was overmedicated on Onfi (the benzo that needs the pre-authorization) and the CBD. We know that CBD can jack up levels of Onfi, so when Dr. Bonni (Sophie's cannabis doctor who recently published a great book all about cannabis medicine that you can order on Amazon) suggested we decrease either the Onfi or the CBD to see if she responded, I naturally chose to decrease the Onfi. Faithful readers might remember that we jacked up the Onfi back in the fall when we spent six hideous days in the hospital ripping off the Vimpat, and I guess after a month or so her levels of Onfi were enough to put her in what I thought was an overall DECLINE. I was scared, ya'll and also resigned to -- well -- you know.

To make a long story short, I took away some Onfi and do you know that Sophie perked up? She more than perked up, actually. She is WOKE. She is rowdy. She is ready to fight with the rest of us against those who would stand in our way (we're talking about you Drumpf, and you Sessions and you Price and you DeVos and all of you who condone and support them and their retro policies that will hurt her and tens of thousands like her). She is not having seizures. She takes Onfi twice a day, CBD twice a day and THC once a day.

I'm here to blow your mind

Speaking of being WOKE, what did The Neurologist say? She was thrilled that Sophie is doing well and took care of my pre-authorization needs, but she also had a few choice words to say about the current clusterf**k that is our country. She was walking out the door, scribbling on a pad, but she said, I will NOT be here if the ACA is repealed and we go back to the Dark Ages before it when I had patients begging me not to write diagnoses in their charts. I think she kept muttering that all the way down the hall before she disappeared around the corner.



WOKE AF
#resist

Smells Like Bullshit, Episode 45,678,982

Unless you've been living under a rock (and I've said it before, I understand), you've seen the various articles coming out at least once a day regarding radical price increases of popular pharmaceuticals. Most recently, there's the Epi-Pen story with its handsomely paid CEO, daughter of a Democratic congressman, and today's selection was about pharmaceuticals that treat inflammatory conditions, including arthritis. You can read about that right here and then come back to hear what the tiny little mother™ mind thinks about it all.





(this blank bit of screen has subliminal messaging because I'm a bit of a conspiracy theorist and tremendously biased)













Are you back? I was going to make this a Facebook post but then got carried away enough to realize that my blog was a perfect place to rant a bit, especially because I so rarely do that anymore. That was a joke. I'm thinking aloud here, typing so fast my fingers are a blur (I scored very very high on finger dexterity when I took a comprehensive test back in the last millennium a skill that comes in handy for a number of things that I won't elaborate upon here), but it will help me to get it out of my system so that I can go back to my day with a modicum of sanity. You know, finish the housework, navigate the systems of care for Sophie, coax Henry along the college application process and remain level-headed while shopping at Target for shorts with Oliver.

Anyhoo.


This is mainly what I want to say about the continued clusterf**k that is Big Fantastic Pharma and Big Grandiose Private Health Insuranceland or The Big Big Medical Industrial Government Complex (I sound a little like Drumpf now, don't I?) as far as it relates to Medical Marijuana World. When this rant's finished, I'm going to fix it ALL. It's going to be GREAT.

Along with the EpiPen and arthritis drugs, epilepsy drugs have long fluctuated wildly in price -- a single dose of ACTH, the steroid routinely given to those with infantile spasms cost $154 when we gave it to Sophie back in the late 1990s. I believe it's upward of $16, 000 now, and that's not because of inflation. That's because of the mumbo-jumbo Big Pharma puts out -- you know -- the high cost of research, rising costs, blah, blah, blah, etc. Diastat, or rectal valium, an emergency medication that is now in generic form, has cost me as much as $1200 A DOSE and as little as $7.50. Long-time readers of a moon worn as if it had been a shell might remember my Drug Mule series when I chronicled what happened to the price of clobazam and how I gamed the system. I'll refresh you:

1. Called Frisium, clobazam was not FDA-approved when we first started using it. I paid out of pocket for it for many years, purchasing from a London pharmacy through a NYC pharmacy. Cost: $150 for a month supply. So, manageable.

2. Approved by the FDA and renamed Onfi, it was not covered under my Insurance Company's formulary and was priced at $1800 for a one month supply, 1/2 of which I was subject to, so that's $900.

3.  I was no longer able to get Frisium but located a pharmacy in Canada that sold clobazam (remember Onfi, Frisium and clobazam are all the same drug and close cousins to Klonopin, one of the most heavily prescribed drugs in the US of Opiate Addicts) for $60. It became illegal to ship the drug across the Border, so two friends of mine in the Movie Industry, on location, picked it up and ferried it back to me. This was legal -- well, sort of -- but not sustainable, and in lieu of flying up to Vancouver every three months (I contemplated doing this and making a little vacay out of it), I turned next to:

4. A non-profit organization on the east coast that helps people with certain conditions get drugs for free or at a reduced price. I should add here that the Magnanimous Manufacturer of Onfi offered to give me a coupon for 12 months that would have taken $50 off the $900 co-pay (similar to the Epi-Pen CEO's magnanimity in lieu of reducing her $5 trillion salary). The non-profit PAID FOR THE ENTIRE CO-PAY which was like manna from heaven. I just had to swallow the small amount of vomit in the back of my throat when I found out that the non-profit was largely underwritten by the Magnanimous Manufacturer of Onfi and GOT A HUGE TAX WRITE-OFF for their charity to folks like us.

Are you following this because those four points were really just illustrative and an aside. Here's what I want to say today, in reference to that New York Times article linked above:


Guess what else is a potent anti-inflammatory?

I'll give you a hint: The DEA recently confirmed its status as a Schedule 1 drug, along with heroin and cocaine, meaning it has no medicinal value and can't be studied except under the most draconian of regulations.

Are you following me?

I'm no conspiracy theorist, but I suspect Big Pharma is getting their ducks (or dicks) in a row as they scramble to research and develop their own cannabis concoctions. The fact that we can grow it ourselves and make our own medicine means no money for The Big Guns, so we must all be subject to the scare tactics of Big Government and Big Private Entities. Free enterprise, baby. Capitalism, baby. Let the Market Do Its Thing, baby.

Us? THC, baby.







P.S.
While we're smelling the bullshit, if you have arthritis and live in a state where you can get some, try cannabis. It's a potent anti-inflammatory. I am not a doctor, though, and have only a tiny little mother mind™so please consult yours and don't sue me.

The Rescheduling Cannabis Desert

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?

Absolutely. 

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.