Spinning

At the osteopath's office

The biggest spider that I have perhaps ever seen spun an enormous web that spanned about a quarter of the width of my backyard, and every morning I stood on the stoop outside my bedroom and looked at it, glinting in the sun. She sat in the middle of the web, waiting, I guess, for any errant creature to be ensnared. When I walked up to her, she sat there still, still waiting, and when I lay my finger on one of the anchor threads, she skittered up the vast and intricate highway and onto a cable that stretches the length of the backyard. This morning I stood on the stoop to see her, but she was gone and the web only a tattered thing, threads hanging.




This morning I struggled with Sophie or, rather, struggled with my despair as Sophie struggled with her seizures. It's been twenty-one years since it all started and nearly three weeks since Sophie's last hospitalization, and while her seizures are fewer and consigned to the early hours of the morning from, let's say, 4:00 am until 7:00 am when they come, one after the other, in her sleep, her days are spent very drowsy -- let's say totally drugged -- and she's unable to go to school. She is weak. She is on one drug -- a pretty massive dose, compared to where she was -- and CBD. I don't have any answers to the questions, so stop asking why? what do you think? what do They say? I don't know. I think nothing. They have no fucking idea.

I'm a giant spider, sitting in the middle of an intricate web that I've built over two decades. I'm waiting for an answer.

Here's what They did:

Sophie isn't having a lot of seizures, except for those few in the early hours of the morning (that reduce me to a raving lunatic, especially when I find her soaked in her bed and must strip it and her, even as she seizes) because she is drugged with Onfi, a powerful and dreadful benzodiazepine. She was, basically, ripped off of Vimpat, an anticonvulsant that she'd been on for over eight years (a small amount in the end, but a small amount of an AED is still an amount that the brain is accustomed to accommodating), but only after being infused with a giant dose of Vimpat (despite my misgivings about it causing hives) that was followed by giant hives covering her entire torso. Later, in consultation with a dermatologist, the three neurologists attending decided that the Vimpat and the hives were coincidental but, curiously, on the discharge papers the drug was listed under ALLERGIES.  She was hooked up to an EEG for over six days, had copious blood work, lung x-rays and urinalysis, was declared normal on entry and three days after had a urinary tract infection that called for an antibiotic (the only time she has been on an antibiotic in the last fifteen years was last spring when she had her wisdom teeth out). One neurologist suggested the drug FYCOMPA as an option to replace the Vimpat, but I pointed out that it was known to cause homicidal ideation, and The Neurologist agreed that he'd seen pretty serious behavioral issues with it. I'm not going to make any jokes here, so just go back and read those italicized words, Reader, and come to your own conclusions. I'd love it, too, if you read this post from over a year ago.

Remember that I don't have any answers. I'm a spider who's been spinning a web for years and I'm now waiting. The other option via the Great Minds of Neurology was, of course, to ramp up the Onfi and work with CBD (remember that CBD and Onfi together show promise in seizure control), so just like some game contestant, I picked that door and took Sophie home, drugged out of her mind on a nasty benzo and an antibiotic. We had absolutely no resolution to the problems that brought us to the hospital in the first place, although I guess there's some comfort in knowing that Sophie is now officially off Vimpat. They (the Powers That Be/Neurologists) have no idea about the CBD and how and if it'll work. If you remember, THE PARTY LINE is not to pay any attention to CBD other than to give a few winks as a sign of tolerance, at least until the big pharmaceutical trials do their slow slog of research. This is because the federal government still has marijuana listed as a Schedule 1 substance, along with heroin and cocaine, and has determined that it has no medicinal value and therefore no public entity can study it. Sophie had nearly two and a half years with dramatic success on CBD, and at no time during that period did any neurologist express any interest -- real scientific interest -- in that success. So we're sent home, basically, on our own, to figure things out. 

Fortunately, I have Dr. Bonni Goldstein to help me figure things out. We're trying a new strain of CBD, along with THC, this week, and I'm hoping that I can reduce the Onfi at least enough that Sophie can live. Yes, I said live, because what she's doing now is not fully living. She is drugged. I took her to the osteopath this morning, and she lay on the table under Dr. Johnson's gentle hands and actually opened her eyes and smiled at the doctor. It was the first time she'd smiled in weeks, and I know she felt some kind of release. I was sitting on the edge of the table, my hand over her legs, and I couldn't stop crying, so Dr. Johnson stood up and brought me a tissue, told me that it was all right to cry. All will be well, she told Sophie, all will be well.







This is as long of a post as that spider and her web were big. I was going to spin into commentary on Drumpf and the article I read here about his nephew who had infantile spasms, the same diagnosis as Sophie's back on that dark day in June of 1995. I was going to rail about health insurance, how premiums are going up not entirely because of the Affordable Care Act (as the conservatives say) but because our for-profit health insurance industry is utterly dysfunctional. This is my web, my rant and yes, it all goes together. Watching Sophie seize, Drumpf's nephew's infantile spasms, the removal of his healthcare coverage, the expendability of the disabled in our culture, my own fatigue and burn-out despite a wealth of support, pharmaceuticals, party lines, obtuse neurologists stuck in boxes, friends and family who just don't get it, Sophie's seizures, and I'm skittering away, my web tattered.

Here's what we need:

1. The federal government needs to deschedule marijuana
2. Pump money into researching its use as medicine
3. Keep Big Pharma out of it by fostering equal partnerships between patients, farmers, interested parties and researchers
4. Expand the Affordable Care Act into universal health coverage
5. Vote for Hillary Clinton for President and hold her accountable
6. Kick Donald Trump and every single racist, misogynistic, homophobic, xenophobic person who votes for and supports him out of the country and into exile on Guantanamo or one of those for-profit prisons filled with generations of black men who were thrown into them for possession of marijuana during the fake Drug Wars.

The Difference Between the Podiatrist and the Neurologist

Somewhere in Beverly Hills, CA

I texted a friend today from the foot doctor's office:

This ocean scene with sounds 
really makes the doc's office 
EXACTLY like being at the beach.

There's nothing wrong with my feet, and since I want to respect their privacy, and they are teenagers, and they are Teenaged Boys, and Teenaged Boys' feet are sort of horrifying (how many of you mothers out there took a look at your sons' feet one day, and they'd all of a sudden become terrifying as opposed to adorable?). The parenthetical happened to me between five and ten years ago, and it's a sad parenting day when you no longer have any desire to kiss that little foot but rather avoid under all circumstances even looking at that wart or those flakes or that ingrown toenail or the ridiculous length of that toenail, much less inquire how it happened. Hence, the foot doctor who does wonderful surgical techniques and cryo-freezing and dispensing of betadine and gauze pads and gives instructions to the person at the end of the hairy leg as opposed to the woman with her head ducked in the chair by the door busily texting. The foot doctor is one of those rare physicians (and men) that I trust implicitly, have literally nothing to say to beyond the usual pleasantries and secretly idolize because, frankly, I have no desire to tend to my teenaged sons' feet.

I did find the ocean scene television hilarious, though, and wondered how it'd go over in the pediatric neurology clinic right before you go in to your quarterly $575 Reflex and Drug Refill Check-up. I, for one, would have appreciated some kind of Matrix-type situation back in the days when I waited in the pediatric neurology clinic and would have gladly drowned myself in the television ocean. Sophie, of course, as a mermaid would have swum off to freedom. At the foot doctor, though, I am content to stare at the screen, the susurration of the lapping waves a perfect accompaniment to my silent hosannas to a doctor that can actually fix my kids.

The Edge

Sunrise, this morning

Sunset, a few weeks ago

I'm a bit obsessed these days with Los Angeles winter sunsets and rises. I'm wondering about the edges of days and nights, why they come in with such glory and go out the same. There's something significant about day disappearing with such drama and then appearing again, aflame, here on the edge of the continent.

I was up off and on all night with Sophie as she struggled with seizures, with agitation, with who knows what. Was it a cold coming on? Was it the weird weather? Withdrawal effects? Was it the fracture in our family? CBD saturation? Something wrong with the new bottle? A stroke? A brain tumor? A virus? In the morning, she had four tonic-clonic seizures within forty-five minutes, broken only by bouts of collapse/sleep. I sat on the edge of the bed and watched her. I put it off and finally caved to Diastat, an emergency medication that I haven't used for nearly two years. Making the call to use Diastat is always difficult because while it has an immediate and blessed effect, it's also in and then out of the system in a matter of days, and that is a type withdrawal for Sophie. She'll be sluggish, maybe irritable, maybe jumpy from residuals. At no time did I consider calling The Neurologist or any doctor, for that matter, other than the one who helps us with all things cannabis-related. I didn't panic beyond the questions I listed above, the questions that have no answer. We live the questions, here on the edge. Nor did I think that something was going to happen and that something would be really bad if I didn't get "help." It crossed my mind that something could happen, but I felt no urgency. I didn't pray for mercy like I might have done in olden times, although the word mercy crossed my mind, was on my lips with please and please stop and guide me. I'm not sure how to get across these edges of things, this feeling that I have after "dealing" for over twenty years, this sort of existential dread that there's no one to consult. This edge, with one side resignation and the other acceptance. Perhaps you think me jaded, over-confident. Or you know exactly what I'm talking about because you, too, have done and thought the same with your own child or young adult. Do you have a way to describe it beyond that?

This morning, Oliver asked, worried, What's happening with Sophie? Is she going to be all right? I told him that she was having a rough spot, that she'd be ok. A few minutes later, he exclaimed over the sunrise, ran outside and took the photo above. It's only for a few minutes that the sky is on fire, before the edges of clouds bleed into blue. Sophie seems none the worse for the wear given the last twelve hours. She's resting, a little congested, but eating and drinking and sitting up, looking around. My edges feel blurred. I'm tired.

Smells Like Bullshit, Episode 33,456,897

We're laboring over here -- laboring to get Sophie off the drugs that she was put on over eight years ago, numbers 21 and 22. I'm not going to tell you about it -- I have about ten times that many posts on this blog that recount the trials and travails. I rolled my eyes today when I read an article about presidential aspirants' medical marijuana platforms. With the exception of one Republican (Rand Paul, who's one weird mother in all other respects and therefore not someone I would even remotely consider voting for) and nearly all Democrats (whose "scores" vary from Hillary's C to Bernie's A), the statements were identical in their ignorance. I'm not going to talk about that, either, because immediately after reading Chris Christie's platform, I downed all the bottles of Sophie's cannabis oil, shot myself up with a few syringes of rectal valium, popped a couple of Onfi and ran my fingers over the Vimpat dust in the pill cutter we're using to divide the thing so that we can wean her off of it. I rubbed that on my gums.

I'm feeling fine.

A friend of mine told me about a ProPublica site called Dollars for Docs. Have ya'll heard about this? Basically, the amount of money a doctor gets from a pharmaceutical or medical device company for peddling their wares is public information, so you can type in any doctor's name and see just what he's being paid to do, along with treating you or, in my case, your child. Sophie's doctor was paid a little over $300 in 2014 by a drug company, but the head of the UCLA Pediatric Neurology Department, a doctor who is quite cordial, whom I've interacted with for nearly twenty years and who is superficially supportive of cannabis oil for the treatment of epilepsy (and I say superficially because there are plenty of neurologists in his department who are openly resistant if not downright condescending about it which leads me to believe his leadership behind closed doors is -- well -- different) received $100, 771 in 182 payments from August of 2013 to December of 2014.

Guess what pharmaceutical company gave him the most money as "honoraria?" For "travel and lodging?" For "speaking" and "education?"

Lundbeck.

$38,781

Guess what drug Lundbeck makes?

Onfi.

Dr. Sankar also received handsome amounts for peddling the vagal nerve stimulator and several other drugs, including Vimpat.

You can't make this crap up.

I don't think I need to state that this has got to stop -- that pharmaceutical companies should not pay doctors ANYTHING to promote their drugs or devices. And if this is impossible, doctors should be required to wear uniforms plastered with all the pharmaceutical and medical device companies that sponsor them -- a sort of NASCAR-style lab coat and scrubs. That way, when we bring our babies to them, we can just scan their bodies and know with whom we're really dealing.

I'm not sure why we, as patients or caregivers, can possibly trust these doctors to act in our best interests or in our children's best interests when these physicians are being paid large sums of money to peddle and promote drugs, medical devices or surgery.

Is this out of line to post on my blog? Will I be lobotomized, perhaps, for expressing my disgust and frustration? That was, in fact, a neurological procedure performed as late as the mid-1950s on those deemed mentally ill and ironically was discontinued when pharmaceutical companies stepped in.

Pardon me while I peel my child off the floor where she's seizing as she withdraws from Onfi and Vimpat and then go work my ass off to obtain and then pay for the cannabis oil that has actually helped her, even as politicians make asinine comments about marijuana and physicians call for "more research" and Children's Services if we step out of line and start giving the oil ourselves.

This is not the time to tell me that some drugs are great. I know that. Nor is it the time to stand up for good doctors. I know they are out there. I also don't pretend to imagine that my rant will make one bit of difference (even as I type, I can hear the fascistic drone of Donald Trump's voice on the television in the living room, the king of capitalism himself -- taken seriously).

What I do know is that I will trust no one in the medical community to know and do what's best for me or my children if they're on the dole from pharmaceutical or medical device companies.

Now I'm going to lie down on the bed in a stupor and contemplate the universe.

The Anecdotal Present

Who cares whether the new toys from Ikea are meant for young children? I felt only a twinge of sadness today when I roamed the aisles and wondered whether Sophie would still like these things. She had something similar years ago, but I had to give them away when her seizures got so bad. I was always afraid that she'd have an atonic drop and slam down into them or otherwise hurt herself. Over a period of about ten or twelve years, Sophie cut her head open at least five times, needing stitches, knocked out a couple of teeth, one permanent, broke a tibia, cracked a wrist, cracked her nose and had countless bruises, black eyes and contusions. It's the little things, the small improvements, that mean the world, and these aren't the things that generally impress the neurologists. That Sophie's seizures have been reduced to where she can safely play with some toys is probably proportionate to our successful CBD story being reduced to anecdote, at least with the neurology community and the ridiculous marijuana naysayers. Hell, the small improvements might not impress those of you who are terrified of disability, who can't imagine either being so or caring for someone and still having a fulfilling life. We live in a culture that often doesn't prize difference, particularly the cognitive kind. How many times have you heard or thought At least I don't need a wheelchair! or I could never handle a child with a disability. I realize that there's a learning curve, and I'm grateful to be at the end of it.  I probably would have wanted to kill myself twenty years ago -- well, maybe that's a bit harsh and insensitive -- if I knew I'd be picking out baby toys for my young adult daughter. I'm not sure I would have been able to keep on keeping on, which is probably a testament for all of us, no matter our situations, that living in the present is all we can do. If you pile on some gratitude as you're basking in it, all the better. And if your present isn't so great, be grateful that it's just for now and will pass.

Thank you.

Thank you.

Thank you.










Update on Vimpat Withdrawal: So far so good, although Sophie seems really tired and even depressed. She has a lot of weakness in her right leg and doesn't want to walk on it very much. She isn't having seizures, though, which I will attribute to the emergency THC and CBD. Otherwise, I'd have to blame the Vimpat and then I might really off myself as we kept her on that damn drug for more than seven years.

An Access Public Service Announcement

Did you notice while watching the Dateline special Growing Hope on Sunday night that nearly every single commercial was for a pharmaceutical or for a pharmaceutical for your dog? Are you at all as bothered by the irony as I? I doubt anyone who wants to be relieved of their incontinence problems, their aching joints or their failure to maintain an erection has to beg their legislator to get relief.


I'm drawing up a few days' worth of Sophie's Charlotte's Web cannabis oil in the above photo. I told Oliver to hold that camera a little higher so you can't see any chins. You can see my Italian peasant woman arms, though, that soft and terribly strong part of my body that I defy anyone to put down as they've served me well as a mother for over twenty years. As you can see, I'm at the end of the bottle which means I can pick up the telephone or go online and order some more from Realm of Caring.

I have access to this lifesaving medication.

Thousands of families don't, though, and are either medical refugees or waiting to get access, at the mercy of politicians. I won't talk about doctors in this post, though, at least the misguided ones. Some people not only live in states without access to cannabis oils but also have doctors who stymie their desire to try it.

Sigh.

You can help. Go to The Coalition for Access Now. 

It's a big world and some thoughts about THCa

Once upon a time ....***





I honestly don't have much to say these days other than the occasional rant against the machine. I'll spare you my wrath and ire today.

Sophie continues to suffer from some withdrawal symptoms, so  we've added in a few drops of THCa, having learned that it's helpful in treating seizures, and the side effects of withdrawal from benzodiazepines, etc. Here's a brief description of it, via The Leaf Online.

Found in the trichomes, Tetrahydrocannabinolic acid (THCa) is the acidic precursor to THC, which actually exists in only minute quantities in the living plant. In living cannabis, THCa is the most abundant cannabinoid and terpenoid, potentially reaching over 30% of the dry weight of any cannabis plant. Immediately after harvest, the THCa begins to be converted into THC, a process quickened by exposure to heat and sunlight. One main reason cannabis is cured is to convert the THCa into THC, as well as drying it out to make it easier to burn, thus releasing the remaining THCa as THC. Knowing about decarboxylating cannabis is crucial in making edibles, where one pre-cooks the bud  before making it into butter to raise the potency by converting THCa into THC.

Like all cannabinoids that exist in the living cannabis plant, THCa is non-psychoactive, though it still stimulates the appetite like THC. It also is a powerful anti-inflammatory, helps fight cancer and other tumors, aids with sleep, and more. Also like THC, an oral test has already been developed to detect THCa. While some sources show THCa to be a stable compound, Aphios research chemicals claims that it is very unstable and will breakdown into THC within weeks. It may have to do with the preparation of synthesized THCa used in their laboratory versus an active live-plant based THCa, but without further research the stability of THCa and how quickly it converts to THC is unknown.

Therapeutic Uses

Analgesic – Relieves pain.

Anti-Emetic – Reduces vomiting and nausea.

Anti-Inflammatory – Reduces inflammation.

Anti-Insomnia – Aids with sleep.

Anti-Proliferative – Inhibits cancer cell growth.

Antispasmodic –  Suppresses muscle spasms.

Modulates Immune System – THCa has been shown to both improve and potentially suppress the immune system functions.

Neuroprotective – Slows damage to the nervous system and brain.

An interesting thing to think about (at least for me) is that all of our tinkering with CBD and THCa is not replicable in these studies that some universities and big pharmaceutical companies are doing. In other words, we are working with a whole plant medicine, the whole plant, and we raise and lower the dose and then observe. We have found that Sophie has better seizure control with a smaller amount of CBD than a larger one. We have also found that she does better overall with a coconut-based oil rather than an olive oil. The studies being done at the University of California at San Francisco, the ones spearheaded by one of the mocking neurologists on the panel, are in a sesame oil base AND are synthetic AND are pure CBD (no THC at all) AND are pushed up to extremely high dosages. When this neurologist told us about the "explosive diarrhea" that was "under-reported" by apparently "untrustworthy mothers," what I thought was, "How the hell are they getting that much oil into the kid and doesn't sesame oil cause diarrhea?" I'll also admit to having a grand chuckle inside my tiny little mother mind at explosive diarrhea causing alarm, given the side effects that Sophie has been subject to over twenty years -- irritability, joint pain, depression, anorexia, depleted iron, impacted stool, increased seizures, ataxia, dizziness, headache, ulcers, suppressed immune system, strange fevers, skin rashes, hallucinations, etc. 


Anyhoo.

I'll keep you posted on the THCa. One thing I've noticed, so far, is less seizures. Again, that's anecdotal and observed by my tiny, little mother mind.

















***For those unaware, the photo is on La Brea here in Los Angeles on a billboard that often displays weird and mysterious photos. As you can see, it's Bruce Jenner in all his Olympian glory. I have vivid memories of crushing on him -- believing him to be the most beautiful man on the planet. He doesn't look like that anymore. He doesn't look like anyone anymore. Bless his heart. Life is weird and the world is big.

Benzo Withdrawal Syndrome and More Ragging on Some Neurologists

My friend Christy Shake posted this on her blog Calvin's Story, but it bears repeating. It's also especially effective given the amount of condescension and mockery we endured last week during the neurology conference. I have a vague, unsettled memory of one of the docs claiming that some mothers with kids on CBD had neglected to mention that their children had explosive diarrhea for a week when the trial of synthetic CBD started. The fact that they are using gigantic amounts of the stuff for the testing aside, her statement that mothers aren't to be trusted in what they report was what incensed those of us dealing with the following shit (Sophie has been on this particular benzo, Onfi, for over eight years. She's been on and off of various benzos her ENTIRE LIFE since she was an infant of three months).


Benzodiazepine withdrawal syndrome—often abbreviated to benzo withdrawal—is the cluster of symptoms that emerge when a person who has taken benzodiazepines and has developed a physical dependence undergoes dosage reduction or discontinuation. Development of physical dependence and or addiction and the resulting withdrawal symptoms, some of which may last for years, may result from either drug seeking behaviors or from taking the medication as prescribed. Benzodiazepine withdrawal is characterized by sleep disturbance, irritability, increased tension and anxiety, panic attacks, hand tremor, sweating, difficulty with concentration, confusion and cognitive difficulty, memory problems, dry retching and nausea, weight loss, palpitations, headache, muscular pain and stiffness, a host of perceptual changes, hallucinations, seizures, psychosis, and suicide. Further, these symptoms are notable for the manner in which they wax and wane and vary in severity from day to day or week by week instead of steadily decreasing in a straightforward monotonic manner.

It is a potentially serious condition, and is complex and often protracted in time course. Long-term use, defined as daily use for at least three months, is not desirable because of the associated increased risk of dependence, dose escalation, loss of efficacy, increased risk of accidents and falls, particularly for the elderly, as well as cognitive, neurological, and intellectual impairments.

Benzodiazepine withdrawal can be severe and can provoke life-threatening withdrawal symptoms, such as seizures, particularly with abrupt or over-rapid dosage reduction from high doses or long time users. A severe withdrawal response can nevertheless occur despite gradual dose reduction, or from relatively low doses in short time users, even after a single large dose in animal models. A minority of individuals will experience a protracted withdrawal syndrome whose symptoms may persist at a sub-acute level for months, or years after cessation of benzodiazepines. The likelihood of developing a protracted withdrawal syndrome can be minimized by a slow, gradual reduction in dosage.

Chronic exposure to benzodiazepines causes neural adaptations that counteract the drug's effects, leading to tolerance and dependence. Despite taking a constant therapeutic dose, long-term use of benzodiazepines may lead to the emergence of withdrawal-like symptoms, particularly between doses. When the drug is discontinued or the dosage reduced, withdrawal symptoms may appear and remain until the body reverses the physiological adaptations. These rebound symptoms may be identical to the symptoms for which the drug was initially taken, or may be part of discontinuation symptoms. In severe cases, the withdrawal reaction may exacerbate or resemble serious psychiatric and medical conditions, such as mania, schizophrenia, and, especially at high doses, seizure disorders.

The following symptoms may emerge during gradual or abrupt dosage reduction:

Aches and pains
Agitation and restlessness
Akathisia
Anxiety, possible terror and panic attacks
Blurred vision
Chest pain
Depersonalization
Depression (can be severe), possible suicidal ideation
Derealisation (feelings of unreality)
Diarrhoea
Dilated pupils
Dizziness
Double vision
Dry mouth
Dysphoria
Electric shock sensations
Elevation in blood pressure
Fatigue and weakness
Flu-like symptoms
Gastrointestinal problems
Hearing impairment
Headache
Hot and cold spells
Hyperosmia
Hypertension
Hypnagogia-hallucinations
Hypochondriasis
Increased sensitivity to touch
Increased sensitivity to sound
Increased urinary frequency
Indecision
Insomnia
Impaired concentration
Impaired memory and concentration
Loss of appetite and weight loss
Metallic taste
Mild to moderate Aphasia
Mood swings
Muscular spasms, cramps or fasciculations
Nausea and vomiting
Nightmares
Numbness and tingling
Obsessive compulsive disorder
Paraesthesia
Paranoia
Perception that stationary objects are moving
Perspiration
Photophobia
Postural hypotension
REM sleep rebound
Restless legs syndrome
Sounds louder than usual
Stiffness
Taste and smell disturbances
Tachycardia
Tinnitus
Tremor
Visual disturbances

An abrupt or over-rapid discontinuation of benzodiazepines may result in a more serious and very unpleasant withdrawal syndrome that may additionally result in:

Catatonia, which may result in death
Confusion
Convulsions, which may result in death
Coma (rare)
Delirium tremens
Delusions
Hallucinations
Hyperthermia
Homicide ideations
Mania
Neuroleptic malignant syndrome-like event (rare)
Organic brain syndrome
Post-traumatic stress disorder
Psychosis
Suicidal ideation
Suicide
Urges to shout, throw, break things or harm someone
Violence

excerpts taken from Wikipedia but most is on white drug insert

It bears repeating to say that my child and thousands like her have been on little tested combinations of drugs with no success controlling their seizures for as long as pharmaceuticals have been around. There is little recognition of this FACT. Holding cannabis up to these phantom-like exacting standards is not just BULLSHIT, it's unethical and borders on criminal.