She In There

This is what Sophie looks like when I take away even the tiniest bit of Onfi, the benzo that we've been trying to wean her from for four years. I'm still weaning the damn drug, a tiny, tiny bit at a time. I tinker each time, as well, with the various cannabis medicine products, and good things happen. Every day is different, though, and we continue to live this life as an experiment in progress.

Like my dear Dr. Jin said, so many years ago, She in there, she know.

I am sorry that I've left you readers high and dry, an occasional post once or twice a week. I haven't visited blogs or left comments, have been deleting newspapers and articles from my Inbox and have just generally avoided -- well -- everything. I've been down and blue and struggling a bit with I don't know what, but I feel it lifting a bit and hope that I will soon be back in writing daily order. I'm engaged in the world as I've always been, but man oh man every single day we wake up to that vile emperor with no clothes and his persistent presidency. It's a freak show and a clusterfuck, and like we say in the writing biz, you just can't make that shit up. I'm not underestimating its effect on my psyche -- nor should you if you're of the same persuasion. If it doesn't bother you or you're one of his supporters, well, I'd bless your heart if I felt any respect for you at all. May it all be over soon and not because some bomb is dropped on us for being such idiots. The thing is, though, that what's rent is rent, right? The veil has been pulled back. The core is rotten, isn't it? So much work to do and most of it is about coming to terms with our privilege and our whiteness.

I've been reading a lot lately -- have been able to dig in deep and get through to the end of novels and bask there glad and filled up. I recommend Lisa Halliday's Asymmetry, Jesmyn Ward's Sing, Unburied, Sing, Terese Mailhot's Heartberries: A Memoir, Claire Dederer's Love and Trouble and An American Marriage by Tayari Jones. I had ordered a book from the library that finally came in, so many months after the request that I forgot where I'd read about it, but I really liked it -- a novel called Elbowing the Seducer by T. Gertler.

Oh, and then there's Fire Sermon by Jaime Quattro. I'm obsessed with her and her writing, her brain and mine.

What else?

I've tried to wander into museums, too --saw a beautiful David Hockney show at LACMA over the weekend and an amazing exhibit that included a multi-media show by Kara Walker at the Hammer last week. I'm so grateful for the sustenance of art -- of words and painting wrought, especially, from great struggle and suffering. Our lives are enriched even as our own troubles recede and perspectives enlarge.

How We Do It: Part LIV

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

Blurry Boundaries

I took Sophie along with Oliver to Sherman Oaks this morning, making a stop at a vintage toy shop that I'd read about earlier before dropping Oliver off for his saxaphone lesson. Or should I say dragged Sophie along to the appointment? I'm struggling to describe how it feels to occupy Sophie's time when it's not straightforward caregiving. The caregiving includes feeding, dressing, diaper changing, bathing, assistance with walking and -- well -- everything to keep her alive and well cared for. Sophie gets pretty agitated when we're out in stores. She's not comfortable standing in one position or she just can't stand in one position. After a bit of walking around she'll start humming and want to sit down on the floor which means I have to stand next to her and prevent her from banging her head on anything around. If she's in her wheelchair, unless it's literally outside, she gets agitated as well, slumping down, humming, straining at the straps. The vintage toy store had a plastic-covered couch with a vintage television playing reruns of Dennis the Menace and Elvis Presley in front of it, so we sat there for a few minutes while Oliver wandered the aisles. Sophie doesn't like television, so after let's say three minutes, she flung her legs out (they were cross-legged on the couch), kicking me in the process and knocking the Fisher-Price toys off the coffee table in front. We stood up, and I called to Oliver to make up his mind so that I could take her outside and back to the car.

This is all exhausting on a level that isn't even physical. When I start feeling inadequate and guilty over it, I remember the more than twenty years of it. I think of the drugs she's on and the withdrawal effects of weaning her from these drugs. I wonder if she should be encouraged to go out and about, despite her obvious discomfort, or if I should just let her be in her room where she seems content mouthing toys and walking around like an artifically subdued lion. The thing is that when she's in her room, I'll walk to her door to check on her, call her name, and she'll look my way, and I don't know if I'm just projecting my own anguish on to her or her eyes are imploring me to do something about the whole situation. It's a whole lot of mental chatter that makes a monkey mind look anesthetized, to tell you the truth, and I haven't learned how to still it in any other way than to know that it will pass.

When we got back to the house, I fed her lunch and led her back to her room. She sat on her bed, pulled her legs up into a cross-legged position, and I walked out with tears pricking my eyes. I don't feel desolate all the time, so I told myself that Sophie -- who surely must feel shitty a lot of the time -- doesn't either.

Making Space for Stories (and an updated embed)

Those are new Benzo-Withdrawal Drool Bandannas that I ordered online. I couldn't resist the marijuana leaf one and hope it has extra powers as it wicks away the vile drug that permeates Sophie's body.




I don't have much to say or write today. I've been thinking a lot about an article I read in Philly Voice about vaccinations. The writer, Amy Wright Glenn, is a pro-vaccine journalist and mother, but she addresses those of us whose children have been injured or killed by vaccinations with unusual gravity and admonishes those of you who would argue against our beliefs and stories. Here is a brief excerpt:

Unfortunately, it’s easy to disregard the stories of vaccine injury, disability or death as statistically insignificant or inconsequential. Collectively we fiercely embrace a utilitarian ethic with regard to vaccine injury. The stories of families suffering serious injuries are too often ignored, discredited, used to further anti-vaccine campaigns, or quietly accepted as a type of collateral damage in our noble war to eradicate the scourge of infectious disease from the planet.

I will say that this is, perhaps, the only article or opinion I've ever read on the issue that doesn't make me literally sick to my stomach or provoke what I can only call post-traumatic stress syndrome. Those overwhelming feelings come no matter the position, and after twenty years I'm only dimly aware that they are, perhaps, related to deep and damaged feelings of not being heard.

One safeguard against a decrease in vaccination rates is the public ridicule awaiting those who question the ever-increasing number of required immunizations. Even parents who were formally compensated by the vaccine court report feeling ridiculed. For example, in 2006, Florida couple Theresa and Lucas Black received a $2 million settlement along with $250,000 a year for medical expenses from the vaccine court. Why? Their 14-year-old daughter Angelica is permanently and profoundly disabled after receiving a standard round of inoculations at 3-months of age.

No matter how many times I try to reasonably talk or write about this issue, even going so far as to allow a renowned journalist to interview me and take photos of my family for National Geographic Magazine, I've never been able to convey what Ms. Glenn does so beautifully in her opinion piece. I know that's because of the emotion I feel and convey, natural given my own experience. I hope that you'll all read this piece, even those of you who joined in the social media mockery early this year or who believed that those of us who choose not to vaccinate our children or who do so on a different schedule should be vilified or mocked or pay fines or whose children should be kept out of school.

Nineteenth century British philosopher Jeremy Bentham argued that an action is morally permissible if it serves to increase the greatest good for the greatest number of people. Contrast Bentham’s utilitarian ethic with German philosopher Immanuel Kant’s deontological, or duty based, moral theory. According to Kant, individuals are not means to be used to justify an end, no matter how pleasing or far-reaching such an end may be. Individuals are “ends unto themselves.” In other words, we have value independent of our usefulness to society. 

Thank you, Ms. Glenn, not only from the bottom of my vast heart, but also from the top of my head and my intricate, mysterious brain. You have made space for our story.

Given these legal and market-driven realities, we must make space for the stories of families who pay the price of our increasingly mandated utilitarian ethic. 

Watch this, my pretties. It happened today in the United States Congress:

Withdrawal

The more I think about Sophie's behavior, seizures and involuntary muscle contractions, the more I believe them to be symptoms of benzo withdrawal.  I've invested the process of removing this drug from her body with all the fuckeduppery of The Whole Business. I feel stripped of trust in anyone or anything.

I also fight off feelings of despair that this will ever be over. Benzo withdrawal syndrome can persist for years, even after the drug is weaned completely. I've always hated war imagery when describing illness. Her battle with epilepsy. His warrior spirit in the face of cancer. Etc. Actually, as long as I "fight" the feeling of despair, it increases. Instead, I allow it to wash over me, acknowledge it, bathe in it, open my eyes even as I'm in over my head. It goes away, then, leaves me dry and again, stripped.







I'm suspicious of the "mental illness" excuse that people of all persuasions trot out every time a man uses a gun to mow down innocent people. I'm not talking about gun control, either. I think the mental illness trope masks something deeper and more rotten that has everything to do with a culture that has always glorified violence, that is deeply paranoid and most of all, intellectually lazy. Does that sound pretentious? It's certainly not original, but it's what I'm squirming about today.











Here's a poem:


In the Library

There’s a book called
A Dictionary of Angels.
No one had opened it in fifty years,
I know, because when I did,
The covers creaked, the pages
Crumbled. There I discovered

The angels were once as plentiful
As species of flies.
The sky at dusk
Used to be thick with them.
You had to wave both arms
Just to keep them away.

Now the sun is shining
Through the tall windows.
The library is a quiet place.
Angels and gods huddled
In dark unopened books.
The great secret lies
On some shelf Miss Jones
Passes every day on her rounds.

She’s very tall, so she keeps
Her head tipped as if listening.
The books are whispering.
I hear nothing, but she does.

Charles Simic

Withdrawal

That's a weird shot, isn't it? I was trying to get a picture of us together when Sophie suddenly head-butt me really hard. It brought tears to my eyes, but it didn't seem to bother her. I suppose she has a high pain threshold what with all the goings on in her brain. My entire scalp is always so sensitive which, Dr. Jin tells me, is too much heat, and now I have a sore spot. Other than that, though, Sophie's had a decent day with no seizures to speak of, fewer tremors and jerks that I believe are withdrawal symptoms. Sometimes I put my hand on her right arm and gently squeeze it, and I swear I can feel an electric pulse running down her arm and into her hand. I wonder if she feels agitated by that, if it drives her crazy, if butting someone's head is a pain that distracts from a greater one.

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.

Dispatch from the Revolution: Cannabis Update and Contortions

New York City, 1996

to Christy

When Sophie got home from school today, I noticed that she'd once again not drunk much of anything. I gave her the afternoon dose of Charlotte's Web and then lay down next to her with one leg draped over her legs, my strong peasant left arm holding her left arm gently down and my strong peasant right arm wielding her sippee cup. I placed it on her mouth and spoke gently but firmly about her need for liquid and dripped a few drops in. She swallowed and then pursed her lips and sucked on the cup. I did this over and over for the next twenty minutes, all while listening to Oliver who was sitting in the beanbag chair in the window chatter about Teslas and the video of a brother and sister singing one of the theme songs to the movie Boyhood. At one point, my position became torturous when Oliver leaned into and over me to show me a video, and because I'm that mother who is aware of the needs of the siblings of the special needs kid, I simultaneously forced the Special Needs Kid to drink and craned my neck into an awkward position so I could respond appropriately to The Sibling. I might have even remarked on the absurdity of it all, and Oliver agreed.

Anyhoo.

I kind of want to back up here, because this post is supposed to partly be an update on cannabis. Sophie has now been taking the Charlotte's Web Hemp Oil at the higher ratio for a bit more than a month. We've also tinkered with the dosage and found something that is working for now. We're still not in the incredible spot we were last year at this time when Sophie's seizures disappeared for weeks at a time, but we might be close. The stuff works for her. We're also continuing the Onfi wean, and just as everyone who's ever visited here knows, the benzo wean is an ugly, ugly process. Today, I had a lovely and very informative conversation with my friend Christy who writes from Maine about her own struggles with her son Calvin's refractory epilepsy at Calvin's Story. As I walked the aisles of Trader Joe's, Christy suggested that the drinking and eating difficulties could very possibly be a result of the benzo wean, that forgetting how to swallow and drooling is a side effect of the drug and can increase when the drug is weaned. I think in that moment I got so excited and distracted that I threw in the chocolate babka and the chocolate cookies and the cinnamon bread, all of which this family does not need. So, later, when I got into my contortionist pose and coaxed Sophie to drink, I felt infinitely more patient with her and far less insane. My mind wandered to the time when Sophie was on another benzodiazepine, the hideous Klonopin and how it caused anorexia. My mind drifted to my helplessness then, how I watched her lose about 20% of her body weight and brought her to an interminable number of specialists who had literally nothing to say or suggest except for the eminent gastroenterologist at a prominent hospital who threatened a feeding tube. To make a long story short, I weaned her from the Klonopin, her appetite came back, she got into tip-top shape with the help of a naturopath and -- well -- here we are.

What's the point of all this? You do what you have to do. Light comes in through the cracks, even from as far away as Maine. I'm going back into Sophie's room to help her learn to swallow by coaxing a bit more liquid into her. Then I'm cutting a big old piece of chocolate Babka and listening to this:

I'm not a doctor, but.

International medical guidelines recommend the use of benzodiazepines as treatment for anxiety disorders and transient insomnia, but caution that they are not meant for long-term use, and should not be taken steadily for more than three months. 

Melissa Healey, The Los Angeles Times

 September 9, 2014

This is not going to be a post where I attack the use of benzodiazepines, despite my belief that they are horrible drugs, perhaps helpful in some ways but whose drawbacks far outweigh benefits. During the last couple of days, there have been a plethora of articles about their drawbacks -- scary drawbacks -- particularly as they are often blithely prescribed to patients with not just severe epilepsy but also garden varieties of insomnia and anxiety.

This is going to be a post where I deride the position of some neurologists who are actively blocking some families' pursuit of high CBD oil to try to stop their children's refractory seizures. 

I've always hated the expression I'm not a doctor, BUT. I won't go into why I hate that expression, but I will state here that the only authority I have to "report" on the effects of benzodiazepines is the nineteen years of experience I have giving them to my daughter. At four months of age, approximately one month after she was diagnosed with infantile spasms and in the middle of unsuccessful high steroid treatments that were injected into her body, we were instructed to add nitrazepam to her regimen. Nitrazepam was only available through what's called compassionate protocol as it wasn't then approved for use by the FDA. We dutifully picked the drug up from the hospital, cut it into quarters with a pill cutter and crushed the infinitesimal piece to a powder that we dissolved in water in a baby spoon and placed in our baby's mouth. Nitrazepam helped somewhat to stifle the seizures, but it by no means stopped them completely. The side effects were drowsiness and irritability, as well as strange fevers that came and went. We added three more drugs to the regimen in the following six months and began a weaning process of the nitrazepam that landed up taking nearly two years. Sophie's seizures kept coming, and over the next ten years she'd be put on Klonopin which made her anorexic and didn't stop the seizures and then, finally, Onfi which we're in the process of weaning. At last count, we have tried 22 anti-epileptic, and none have been successful. I can honestly say that it might take years to get her off of Onfi alone, and given the six-plus years she's already been on it, I can't begin to imagine what the long-term effects of it have been, particularly when I read the articles that have been steadily coming out of late.

I've discussed ad nauseum (most recently in my mini-memoir) the moment when I knew Sophie's esteemed neurologist had no idea what was going on or how the combination of drugs she was on as a nine-month old baby were interacting. If I were Oprah, it would have been the What I know for sure moment and what I knew for sure was that the whole situation was fucked up. I'm going to use profanity there because it's entirely called for and there are no other descriptors in my mind for just how dire the situation was and continues to be for countless children with epilepsy. 

Now I'll get to the point of this post which wasn't to bash benzos but to bash those in the medical world who continue to obstruct families' pursuit of high CBD oil. I know of two instances in southern California alone where prominent neurologists have actually reported mothers I know to children's services for going against their doctor's wishes. There are countless anguished reports on social media of families butting up against their doctors regarding CBD oil despite those children being on multiple drug regimens with no relief of constant seizures. It's madness, and it makes me furious. I can't figure it out. I think about it all the time and wonder why? Is it ego? Is it hubris? Is it jealousy? Is it the way our doctors are trained? Is it our culture? Yes, I realize that "we need more studies," that research is necessary and that the traditional scientific method of testing is good practice, but what the hell?

Do you think giving my four month old baby a powerful benzodiazepine along with two other drugs was something done with confidence? Had the long-term effects of that particular combination been studied rigorously? Do you think the woman who called me the other day and told me that her kid was on five anti-epileptic drugs (three of which were only recently "approved" for use) and couldn't get her neurologist to cooperate with her wanting to try CBD is unreasonable? 

I think it's madness and is only furthering my latent animosity toward the medical world. I want to be a builder of bridges. I want to improve communication between patients and doctors. I want to help break down the disconnect, but I find it increasingly difficult to do any of these things. If I were in a more measured mood, I'd craft something more particular and to the point. Instead, I'll resort to bad language, to using the word clusterfuck, to wonder about Sophie's increased chances of Alzheimer's Disease now that she's been on mega-doses of benzos for most of her life, to wonder what that would exactly mean for a person like herself. I'm not a doctor, though. I'm a writer and a mother, and my weapons are language and love.

Vehicle Repairs

That's a sign from the parking lot of the Arclight Cinemas, the very fancy movie theater where I go to see movies when I go to see movies.  I used to joke around with my friend D that one day we'd become bank robbers, and lately I've felt like busting out. Hitting the road, getting the hell out of Dodge, starting over, forgetting the past, to hell with the Zen stuff -- you know, right? Or not. Maybe I'm just sort of simpatico with Sophie, who must feel like peeling off her skin as that drug is eliminated from her system. Wait. Who am I kidding with that presumption? While I battle, often, with the mixed identity thing -- where does Sophie begin and I start or where do I end and she begin? -- she is on her own path, and as much as I like to think I'm in charge, in control, I'm really just walking beside her. Except for when I am forced to make outrageous "choices" and decisions for her general welfare, like putting her on those 21 (yes, I mis-counted, and she's been on 21) drugs despite the sick feeling in my stomach each and every time. There's a lot of f**keroo bonzai to process here, so humor me. I've always had a problem with Authority. Sophie seemed better, today, thank Jesus -- went off to school with a bit of spring in her step. This is to be expected, evidently, the on again off again nature of the waning wean days. We upped the CBD in hopes that it'd help with the detox, so let's see what happens.

In the meantime, buck authority.

Drink all you want in a parking garage.

Loiter with your friends and rotate your tires.

Repair your vehicle.

Hell, exercise your body and your mouth.

Peonies and Benzos

Yeah, I know. Those peonies.

I was all Wallace Stevensy the world is ugly and the people are sad and then I walked into the dining room and saw them. There aren't even words to describe such a sight.

Thank you for your kind words and emails in response to my last post. I did a lot of digging around on the interwebs last night and read a whole lot more about benzodiazepine withdrawal. There wasn't much that I didn't already know, and what I knew was that it's all fucked up. It's insane that these drugs are used at all -- and I mean at ALL, and I know there are a lot of people out there who think a little bit of a benzo can nip anxiety right in the bud. Smoke some pot, people, find another class of prescription mind-numbers, in lieu of popping the benzos.  And when people worry about the amount of THC in marijuana, about not wanting children to get high (as opposed to the real concern that THC at certain levels can exacerbate seizures), or when physicians worry about the long-term cognitive effects of marijuana on the brain -- holy shit. Take a look at what the benzos do and the level of suffering people -- children -- experience when you take them off.

I'm assuming that Sophie is going to have really bad days, off and on, for maybe even more than a year. I'm going to have to push through my rage about this SIT U A SEE OWN, but it's going to be difficult to not constantly compare the clusterf**kery of the current mindset in epileptology to what's been going on with the approved AEDs for all these years. I'm going to keep on banging on my drum, too, until the media takes it upon itself to do some kind of story on what the alternative to medical marijuana has been like for many kids. Like mine. And yours.

Humor my rants for the time being or shut me up with peonies.

Jesus! and the Benzo Wean

The Annunciation

Fra Angelico

Florence, Italy

I've never gotten any comfort from praying to any of the gods, including Jesus. Oh, I take that back. There was a time when I got down regularly on my knees in the middle of the night and plead for mercy. And, yes, I'm aware that faith has little to do with appeals and entreaties being granted or denied. I was raised a Catholic, loved the saints as some little girls love horses. I saw dancing spots in church multiple times, was just about to faint before boredom crept in. I read Simone Weil in college. How many of ye with little faith or a lot of it have read her? I saw the world in a grain of sand or something like that one night about six weeks into my first year in college, lost myself in eternity and bliss, and no, I didn't do drugs. I had a near Stendhal Syndrome-like reaction to the frescoes at San Marco in Florence, Italy, including the several Annunciations of Fra Angelico. That being said, I'm not so much an unbeliever as someone who doesn't believe. In that way.

All of this is to say that I sat by Sophie on her bed tonight and looked out the window as the sun went down. It's day fourteen of a benzo wean, and things are hard. Not as hard as they were in the past, before the cannabis, but they're still hard. Sophie is drooling a lot, and she doesn't want to eat very much. When she does eat, she chews so slowly, if at all, that I feel a frisson of fear that she's developing another round of ESES (and because I don't want to exacerbate this fear, I'm not going to type it as you can do a search on the internets or this old blog and find out plenty). Then I decide that it's the benzo wean, and I feel rage. I've read all the bad things happening to good people stuff, God is beside you, with you, around you, within you. If prayer is breath, the in and the out can tamp down rage, but it's my experience that Jesus doesn't come and take it. So, ye of faith, I don't feel like a good person when I feed Sophie during these times. She holds food in her mouth and slowly, agonizingly moves it around. She lets it fall out. I have to pour liquid down her throat. I am impatient and maybe even mean in my thoughts. There's despair and ruination, and I'm certain Sophie knows this. Maybe not certain, but there's that air that I'm breathing out. It can't be good for her.

Mercy.







Here are the symptoms of withdrawal of benzodiazepines that I took from the website of the NYU Comprehensive Medical Center last night:

An important concern when people with epilepsy take clobazam or other benzodiazepines is the risk of “withdrawal seizures” or increased, repetitive or more severe seizures if the medicine is reduced or stopped. Withdrawal symptoms usually begin upon stopping the medicine and can last for up to 8 to 10 days. Early symptoms might be agitation, anxiety, restlessness or even fast heart rate, though seizures might begin immediately as well. The longer the person has been taking clobazam and the higher the dose, the greater the tolerance and therefore the higher the risk of withdrawal seizures. Even small, gradual dose reductions can temporarily increase seizure activity, but your doctor may suggest these changes since the long-term decrease in effects like drowsiness and depression often makes this worthwhile.

Besides increased seizure activity, other symptoms of withdrawal include:

• drowsiness
• dizziness
• poor coordination
• drooling
• restlessness, aggression, anxiety or agitation

Tell your doctor if you notice any of these symptoms when your dosage is being reduced.

Are there long-term side effects of taking clobazam ?

Clobazam and other benzodiazepines are the medicines that are most likely to cause psychological dependence. When someone takes a benzodiazepine at a certain dosage for more than 2 to 4 weeks, the body (or specifically, the brain's receptors for the neurotransmitter GABA) becomes accustomed to it. Then if a dose is missed or reduced, a withdrawal process starts, characterized by:

• anxiety
• increased heart rate
• tremor
• generally feeling unwell

Taking another pill relieves all of these symptoms, confirming the person's belief that he or she "needs" the medication. This is a very dangerous cycle, since long-term use can cause long-lasting changes in the brain's GABA receptors that lead to significant problems such as impaired cognition, decreased motivation, and depression. In this setting, rapid dose reduction can cause severe symptoms of anxiety, insomnia, and illness, as well as seizures.

In many of these cases, very gradual reduction of the benzodiazepine (often over many months or years) can lead to a dramatic improvement in attention, concentration, memory, and mood without worsening the seizures, insomnia, or anxiety for which the medication was originally prescribed. This gradual reduction must be performed under the guidance of a doctor.

- See more at: http://epilepsy.med.nyu.edu/treatment/medications/clobazam#sthash.MEK6WErd.dpuf

The Face of Epilepsy with Cannabis:

First, I'd like you to go back and look at this post from November, 2013, nearly six months ago.

Did you go back or do I need to put that photo here, again? Let me know.

We visited Sophie's neurologist today at USC, and can I tell you that it was THE BEST neurology appointment I've ever been to in the nearly twenty years I've been going to neurology appointments? Let me say it again: today's appointment with The Neurologist was THE BEST neurology appointment I've ever been to in the nearly twenty years I've been going to neurology appointments.

Why? you ask.

The Neurologist is someone whom we really like and respect. When I told her that Sophie has been going weeks at a time without any seizures to speak of, she was astonished. Honestly, her jaw might have dropped. Sophie looked her in the eye and smiled throughout the appointment which made her jaw drop so far that I could see all the way down her esophagus into her lungs. I'm serious.

Reader, this appointment was not just The Best Neurology Appointment of the last two decades but maybe one of The Best Appointments In General of the last twenty years. At one point, I told The Neurologist that she should run up and down the hallway and shout and scream about her seizure-free with cannabis patient, Sophie. Right when I said that, she stood up and darted out the door. I'm serious. I almost expected to hear hooting and hollering, but what actually happened was she went looking for someone to tell and no one of significance was around (the person of significance, whose name will not be spoken here, was evidently one of those Neurologists Who Doubts Anything Unless It's Been Through The Proper Research, Including Double-Blind Placebo Controlled Trials). Oh, well. As one of my French dictations went: Tant pis pour elle.***

The rest of the appointment was me extolling the benefits we're seeing as Sophie goes longer and longer without significant seizure activity -- benefits for our entire family, not to mention Sophie's entire being. Then we talked about further reductions in the Onfi (the benzodiazepine that has been tested out the wazoo in double-blind placebo controlled studies for its efficacy in controlling seizures) and agreed that the slower we do it, the better. Withdrawal from benzos is an ugly, ugly matter, but we've managed to do two weans already, and The Neurologist was pleased to hear that the cannabis seems to be helping in that regard as well.

As they say in certain parts of the country, It don't get much better than that.

***Too bad for her.

Dispatch from the Medical Marijuana Revolution

So, here's the thing. Last week was not a good week. There was a pretty decent earthquake, a full moon, a vague virus, the bottom of the bottle of the second batch of Charlotte's Web and some seizure activity after several weeks with virtually none. The week before last, there was also an Onfi wean that The Husband forgot to tell me about. AHA! Withdrawal was probably more the reason for the increased seizure activity than all those other things combined. I think. There's always a lot of thinking going on in these parts --shallow thinking (why, why wasn't it me that had a Javier Bardem sighting in the Polo Lounge in Beverly Hills the other day***), mid-level thinking (why the hell can I not make it through novels longer than 400 pages anymore?) to highly complex thinking (perhaps I walk around and drive around in a weird state of numbness because I actually CAN after nineteen years of dealing with the adrenaline rush of constant crisis?)

Anyhoo.

I highly recommend that any of you with children with refractory epilepsy or any of you with seizures or other autoimmune diseases at all give this medical marijuana thing a try if at all possible, because the thing is: even when Sophie does seize, she recovers quickly, she's coming off of one of the most vicious anti-epileptic benzos, she's more alert overall and it really, truly looks like this is the thing. I know that hundreds of you are struggling in your states to get easier access or access at all. I know that many of you have neurologists who are perhaps more like dinosaurs than healers. I say forget them and pursue what you think will help your kid. I'm not going to even qualify that and say something bullshitty like I am not a physician and in no way recommend this treatment without a doctor's referral. Think back. Didn't I tell you not to try that fifteenth drug if it was in combination with the thirteenth and fourteenth?

This concludes today's dispatch from the Medical Marijuana Revolution.








***Probably because I have never been to the Polo Lounge. A friend of mine posted it on Facebook and I died a small death -- you know, la petite morte. There's some medium-thinking for you. Look it up if you don't know what I'm talking about.