Sunbathing Today

photo by Lauren, Sophie's aide

That was the text that Lauren sent me today, along with the above photo of Sophie. She's doing okay, dear Readers, since our last conversation here on the old blog.

After the shitshow I described previously, Sophie had another horrendous reaction to the Depakote -- well, maybe not horrendous, but she was rendered barely conscious by the combination of the new drug, the benzo she's been on for 12 years and the CBD and CBDa. I had a conversation with the Nice Neurologist who spent a decent amount of time with me at some odd hour (he's stellar about accessibility) describing what he called pharmacology. I interrupted him at some point and asked him whether he was making decisions via a dart board, and he burst out laughing. I have a dart board, he replied, but it's got the President's face on it.

Reader, I love the Nice Neurologist.

What we decided on was to lower the Onfi by quite a bit and keep the Depakote and cannabis medicine the same. The science behind that (coupled with some intuition and guesswork, I'm certain) is that the cannabis and the Depakote push up the levels of the Onfi, rendering Sophie way too sleepy and weak. So "lowering" the Onfi is really not "lowering," technically, even though the number on the syringe says so. Sigh.

That's what we've done this week, and it seems to be working in that Sophie is awake, alert, able to go to her day program and have fewer seizures. I'm convinced that we need to get Sophie fully off the Onfi and let the cannabis really do its work. Perhaps the addition of Depakote will enable this to happen.

And speaking of cannabis, I read this week that former house speaker John Boehner (who is on the board of Acreage Holdings, a marijuana investment company) has been making an online infomercial pitch for the cannabis industry. "This is one of the most exciting opportunities you'll ever be part of," Mr. Boehner says in an endlessly streaming video for the National Institute for Cannabis Investors. "Frankly we can help you make a potential fortune."

Mr. Boehner stands to reap about $20 million dollars from his partnership with Acreage Holdings.

How nice for you, Mr. Boehner.

Some of you might remember that I wrote an open letter to the man last year when this story first broke. Since it's heated up again, I hope you'll re-read and share it with anyone in your circles who might get it to the former Speaker himself.

Here's the link.

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

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.

Boxes O'Onfi

Did I really defend my anger over the pharmaceutical industry a month or so ago when that pharmaceutical rep commented on my blog? What was I thinking trying to reason with that person? This morning I read the Los Angeles Times' report on the Oxycontin clusterfuck. It's titled 'You want a description of hell?' Oxycontin's 12-Hour Problem. Read it and come on back and rage on with me.

Despite all the clusterfuckery going on in the Presidential race, the particular topic of the pharmaceutical industry's stranglehold on -- let's just say EVERYTHING -- is of way more interest to me. It might be a stretch, but it's why I don't trust -- let's just say EVERYTHING -- germane to Big Pharma. That would include some of my favorite non-profits, like The Epilepsy Foundation, that get huge perks from pharmaceutical companies. That would include the CDC and vaccination policies, so if you're of the mind that I'm immoral, anti-science, stupid or otherwise cray-cray, do me a favor and fly, my pretties, fly!

I sort of feel like going rogue.

Remember my rant against the government and marijuana policy the other day?

Remember the nice physician I talked to at my friend's house over spring vacation? He objected to my bitter comment that neurologists who continue to prescribe multiple anti-epileptic drugs to their patients with refractory epilepsy are unethical.

They're unethical.

Why is marijuana not rescheduled, yet? Is it because the big pharmaceutical companies are working their asses off to make a synthetic version of the medicine and have so influenced lawmakers on both sides of the proverbial aisle that nothing will happen until they've discredited the grassroots movement enough to take total control?

Why am I still having to persuade family members of the efficacy of medical marijuana in lieu of powerful and addictive painkillers?

Why did I rip open the last box of Onfi in the supply I bought months ago, order a refill and get the runaround, once again, from the insurance company? Oh, I forgot. Onfi is a powerful and addictive narcotic that's not good for much other than sedation and temporary alleviation of seizures. And there are lots of people addicted to it and its even more formidable auntie, Klonopin, so the government has wizened up and is becoming stricter about how much you get and how often. I think at some point it was touted for restless legs, and sleeplessness and anxiety, but god forbid you should take it for over eight years like Sophie has, because then you're stuck with it maybe FOREVER.

Let me tell you this: Sophie is on the new strain of WEED, and it's working. She goes weeks with only one or two seizures. What do you think of that? Anecdotal? I work my ass off getting input from her medical marijuana doctor, my fellow mothers and fathers in the cannabis community, and my own reading to tinker with the strain and the dosage and the timing, and sometimes we find a sweet spot and it's glorious. Letting go of all the conventional stuff feels glorious, too. I'm no longer donating money to foundations that are underwritten by pharmaceutical companies. I'm not serving on any more boards of these companies, no matter how much "good" they do. I'm not going to vote for any politicians who receive large sums of money from pharmaceutical companies. That might mean everyone, so I'll write in a candidate instead. Like I said, I'm going rogue. I wish that I could let go of the Onfi and the Vimpat that Sophie's still on, but unfortunately, if I did so, she'd probably die. That's right. The withdrawal would probably kill her. So I'll continue to rip open the boxes and draw up the drugs in hopefully tinier and tinier amounts until she's off them completely.

Then, I'm getting stoned myself.

Sunday Inference

I spoke with a woman last week whose baby recently had been given phenobarbital as a first-line defense when the baby developed seizures. Twenty one years ago, I stood in the hallway of a New York City hospital and expressed concern about the effects of phenobarbital on the developing brain of my own baby. What's a couple points drop in IQ? the doctor said, and that was that.

I spoke with a woman a couple of weeks ago whose baby recently had been given keppra as a first-line defense when he developed seizures. The doctor said that a small percentage of people taking the drug get very angry and irritable, she said. Yes, it's called "keppra rage," I told her. About ten years in to her diagnosis and shortly before it was approved for use, Sophie took keppra. It did nothing for her seizures, I told the woman,  but she never developed any rage.  Last night, the woman texted me that the baby had another seizure. He has a cold, the mother told me. I had hoped the medicine would work. I said, Viruses are notorious for precipitating seizures. All bets are off.

My friend Allison has been treating her son with cannabis from the get-go. Would I have done so had I been presented with the option? Did I feel resentful of nineteen years, wasted? No more I am not a doctor, but...

Yes, she said. Yes, I would. Yes.

The SIT-U-AH-SEE-ON

If I were French, I might call our current situation with Sophie -- the hives, the CBD, the THC, the Vimpat and the Onfi -- LA  SIT U AH SEE ON. There's something about the supercilious accent that helps me cut through the fear and cope. Writing it down here also helps me to impose some order, however illusionary or delusionary because, let's face it, after twenty years, the main thing I know is that refractory epilepsy is a big, dark hole and no one, absolutely no one, knows what the hell is going on.*

I had a conversation with The Neurologist this afternoon about Sophie's hives, and she suggested that I cut Sophie's dose of Vimpat in half. My initial response is Whoa. Any of you regular readers know that weaning anti-epileptic drugs, like weaning drugs for depression or anxiety, is serious business, and that the slower you do it, the better. I also carry around a veritable salt lick when it comes to neurologists' opinions and directives about drugs -- the titration schedules, the weaning schedules and the side effects. It's been my experience that neurologists, in general, over-prescribe, ramp up too quickly, take down too quickly and dismiss side effects. That being said, I see the hives, I have the tiniest gut feeling that they might be related to the Vimpat, and therefore, the Vimpat must go. I really like and respect The Neurologist, and she made the call.  That being said, what if it isn't the Vimpat? Ripping off the Vimpat quickly will inevitably cause some withdrawal, including increased seizures and discomfort, but not taking it away could cause some serious shit. I've gotten good advice today from my comrades in seizurology and from my dearest friends. Christy of Calvin's Story (if you haven't read her writing, yet, you need to), said the most profound thing to me after she'd listened to LA SIT U AH SEE ON.

She told me that she has learned to never make a decision based on fear.

We chewed on that for some minutes, laughing at times over the impossibility of it all, how if we really sat down and thought about it, we'd have some kind of fear over all this shit we've faced and continue to face raising our children. We also acknowledged how our gut feelings are generally right -- maybe not even generally, but always. The trouble comes when you don't have a real gut feeling or it's occluded by -- yes -- fear.

So, here's the thing. I'm plain afraid of weaning Vimpat so quickly. I'm afraid that Sophie will go into status or will go insane. I'm afraid not to wean Vimpat because of the possibility of a serious allergic reaction or something brewing. While Vimpat has never really helped her, she's been on it for over seven years, so I'm banking on its relative uselessness as a seizure medicine as far as taking her off it. I have THC and CBD to help during withdrawal, and I have Diastat in the cupboard (currently expired because we haven't had to use it once in the nearly two years she's been on CBD) if there's a real emergency. On the plus side, we were going to wean Vimpat eventually, as soon as we had finished the Onfi wean.

When I lay out my fears and allow my gut to breathe, I think the Vimpat has to go. LA SIT U AH SEE On calls for it.

I think.










*If you have any ideas about what's going on or have a SIT U AH SEE ON of your own to share, please feel free to do so in the comments, especially if you're acquainted with epilepsy and drugs. I'm all ears -- fear and ears.

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.

Interesting Epilepsy Pharmaceutical Side Effects, Part 42

Today's Interesting Epilepsy Pharmaceutical Side Effects presentation will be about the drug ezogabine. If that name is too much of a mouthful for you, we can also call it Potiga because Potiga is simpler, more catchy and conjures up a sweet-smelling weed, perhaps, and the babbling of a baby. I imagine the folks who sit in the airy rooms of the marketing departments of the big pharmaceutical companies have a grand time figuring out what to call the latest chemical being thrust upon the epileptic populace. What would be catchy for a neuronal potassium channel opener? Bart asks his group of young design hotshots. We need something that sounds appropriately serious with a bit of fluff to allay anxiety. Anyone?

I digress.

Some of you particularly alert students of epilepsy pharmaceutical side effects might remember that several years after Potiga was approved for use in adults, the FDA in 2013 had to issue a box warning because of the strange reported side effect of skin discoloration and eye abnormalities characterized by pigment changes in the retina. I heard a  bigwig doctor at last year's Epilepsy Pipeline Conference up in San Francisco speaking to a group of professionals about the drug and the unexpected side effects that showed up years later. She and the group of professionals in the audience actually chuckled when she explained that people were coming into neurology offices with blue lips and fingernails. Reader, you know I love a chuckle and have a sense of humor that is as dark as a guillotine (or is it a gallow?), but hearing those docs titter made me sick to my stomach. I know they were laughing with rue, but I couldn't help but think doctors aren't allowed to laugh about things like this. I was horrified because I had discussed Potiga a couple of years before as a possible add-on for Sophie, and that discussion was with Sophie's pediatric neurologist. No mention of blue lips, nail-beds and eyeballs was made because these were not known, but identified adverse effects included urinary retention, neuropsychiatric symptoms, suicidal thinking or behavior, dizziness and somnolence, QT interval effect, and withdrawal seizures. That list is pretty much par for the old epilepsy drug course, but I decided to pass anyway as I was still in the middle of my sacred vow not to accept any more drugs unless Jesus Christ offered them to me. I imagine that you particularly alert students of pharmaceutical side effects might have also raised your eyebrows that this drug was approved for use in adults back in 2011.  Adults, not pediatric patients.

Ahem.

But that's yet another digression.

The timeline for Potiga is thus:

1. FDA approves Potiga in June, 2011
2. FDA issues Drug Safety Communication warning in April 2013 about the retinal abnormalities and blue skin discoloration
3. FDA announces approval of label changes to the drug to account for the above in October 2013, the so-called box warning.
4. FDA okays current label to manage eye, skin problems June 2015. Here's the information:

News Alerts > Medscape Medical News

FDA Okays Current Label to Manage Eye, Skin Problems With Potiga

Susan Jeffrey

 DisclosuresJune 16, 2015

Evidently,

FDA review of additional safety reports does not indicate that the pigment changes in the retina observed in some patients affect vision," the FDA statement notes. "Skin discoloration associated with the use of Potiga appears to be a cosmetic effect and does not appear to be associated with more serious adverse effects.

You can read the Medscape article here if you'd really like to read it. 

What's my point beyond the rest assured that your blue lips and fingernails are just cosmetic and you have no need to worry about losing your vision except you still have to monitor it and notify your doctor if you feel suicidal or haven't pee'd in days?

My point is that we rarely hear about all the shit going on with epilepsy pharmaceuticals and the chances we are taking every single day when we give them to our children.

When a neurologist claims that they do not have enough information about cannabis to prescribe it or recommend it, they are being disingenuous if they don't also say that they don't know about Potiga or Banzel or Vimpat or Fycompa or Vigabatrin or Felbatol or hemispherectomies or vagal nerve stimulators or long-term use of benzodiazepines. The information about cannabis has been suppressed, buried, stymied for a couple of decades short of a century, but it exists.

What's that expression? The gig is up? The emperor has no clothes? Help me, Rhonda.

Cannabis Oil Update And Another Regurgitation of Sophie's History For Emphasis*

photo by Lynn Johnson for National Geographic Magazine

My friend Ray Mirzabegian is featured in an article about medical marijuana in this month's National Geographic magazine. Ray is the man who has a young daughter with refractory epilepsy, who drove to Colorado several years ago when he heard about the the Stanley Brothers and their cannabis oil. He learned everything he could about the oil, grows and makes it for a hell of a lot of children and adults here in southern California through Realm of Caring California. He's also one of the nicest guys on the planet, and I don't know what I'd do without him.

Right now, we've gone back to the original California Charlotte's Web that Ray makes and have stopped using Charlotte's Web Hemp Oil. While CWHO "worked" moderately well for Sophie, we've been struggling to find the same degree of seizure control and have decided to go back to the product we used when all the really good stuff happened. Sophie is, of course, on a little more than half of the benzodiazepine that she was on a year and a half ago, and if you read anything about withdrawing benzos, you realize it's a horror show. I've read adults report that they can experience withdrawal symptoms months and months after they're off the drug completely. If it's hard for you to imagine how difficult the process is, imagine peeling back your scalp and bathing your brain in a powerful narcotic twice a day for eight years. That would be Sophie. I don't think we can properly assess cannabis oil's true effectiveness until she is off the benzo completely, and that might take us another six to eight months. Then we've got to work on Vimpat, another powerful drug that she's been on since October, 2008 when it was newly approved for use in epileptics over the age of 17. Do the math.

In the meantime, though, she has some stunningly good days and no really bad ones. We are quite tolerant of one seizure or so a day, especially since they're brief and she seems to recover rapidly. A bad day might be several seizures in a day with drooling and clamminess, but they're not happening more than once or twice a month. Did you know that we haven't used Diastat, the rectal Valium rescue med, since we began the oil? KNOCK THREE TIMES.

I went to a party on Saturday night for a friend of mine and found myself engaged in conversation with a couple of people about our experience with cannabis oil. I told one man, a physician, that Sophie had been on 22 drugs in her twenty years. He said, That's impossible! There aren't even 22 antiepileptic drugs! I began naming them and then called it a day when he conceded that he hadn't heard of several of them. When I got home later that night, I wrote them all down and sent them to my friend to forward on to him. Here's what the list looks like:

Sophie’s Drug History 1995-2015

ACTH

Prednisone

Nitrazepam

Carbamazepine

Depakote/Depakene

Phenobarbitol

Vigabatrim

Felbatol

Neurontin

Lamictal

Banzel

Klonopin

Ativan

Diastat

Keppra

Zonegran

Topamax

Trileptal

Frisium/Onfi

Vimpat

Micronor (progesterone to help mitigate the hormonal swings that exacerbate seizures)

IvIg (intravenous immunoglobulin, adminstered for ESES, 2010, 2013)

Ketogenic Diet (two six-month trials, 1995 and 1999)

What was interesting to me was when I checked on the drugs -- when they were approved for use by the FDA and for what age child. You know where this is going, right? Many of those drugs were brand-spanking new when we gave them to Sophie (like Vimpat, the one she's been on for seven years), several were only available through compassionate protocol or through pharmacies in England and Canada or Germany and many were approved only for use in children over twelve or seventeen, if at all. At no point was Sophie on one of these drugs at a time, but rather on multiple combinations -- a near constant titrating up and down and adding and subtracting for the first six or so years. I don't feel like listing the side effects of these drugs or even the reasons why we discontinued them. Think anorexia, thrush, extreme irritability, sleeplessness (for YEARS), severe sedation, dehydration, recurrent fevers, rashes, hallucinations, psychotic behavior, increased seizures, new seizure types, headaches, nausea, ataxia, excessive drooling, impacted stool, depression (yes, Sophie's neurologist diagnosed depression many years ago, so we discontinued the drug). Well, I guess I listed some of them. 

I don't remember when, but at some point I just plain refused to add a third drug to a regimen until one of the two she was on could be weaned. Not a week goes by that I don't hear of kids on three, four, five and up drugs, still seizing. What the hell? When Sophie was about twelve, I refused to try any more new drugs unless Jesus Christ offered them to me. I firmly believe that relying on Jesus was no more or less scientific than relying on the old dart board that the epilepsy docs used. No one reported me to Child Protective Services. Sweet Jesus -- he never showed up.

Did I mention that at no point was Sophie seizure-free or even better? Can I emphasize enough that despite these various combinations of drugs/poisons and the good intentions of several superb neurologists and scientists, no one really knew what the hell was going on in Sophie's brain other than that it was supremely dysfunctional? Did I mention that during these nineteen years (and continuing today), Sophie received Chinese herbal teas and acupuncture as well as regular appointments with an osteopath, homeopath and nutritionist? Did I mention, too, that after two rounds of vaccinations, even as her immune system was fully compromised by high-dosage steroids, she was never vaccinated again? I firmly believe that without these complementary therapies, the refusal of vaccinations and a diet rich in whole foods, she'd either be dead or far more compromised than she is today.

Without Ray and all the people who are working so diligently to research cannabis, Sophie would also still be seizing.

*Please humor my repeating this stuff over and over if you've read it, over and over. I still get new readers and emails weekly asking for information. Every now and then, I feel the urge to evangelize a bit. 

Three Pictures

When the sun goes down at the end of the day, it slants just so through the bathroom windows. I always think, it's the bathroom's favorite time of day.

Sunset was weird tonight, windy and orange-hued.The air was thicker than usual, and it might have sprinkled a bit here and there. It's never enough.

One drug, one month's worth. Thirty blue tablets, chock-full of chemicals that do terrible things but don't stop seizures. Someone's making money. You do the math.

Fycompa, Blue Person Syndrome and Homicidal Ideation

So, I didn't tell ya'll about the conversation I had with The Neurologist the other day when I took Sophie to a routine appointment there. We talked about arranging an ambulatory EEG, and somewhere in the discussion I asked her what the new drugs in the pipeline were looking like. I asked her about that drug that makes your lips blue and she laughed, ruefully. It's obviously a hard sell, she said. I still remember the titters that followed a discussion of this drug, Potiga, by an eminent Neurologist From the East Coast at last June's Epilepsy Pipeline Conference. They made me sick. That side effect is called Blue Person Syndrome. I'm not making this up. If you're one of those folks who believe in Science As It's Practiced in The Greatest Country On Earth, read about it here. If you're like me and believe yourself to be a part of a lifelong Monty Python skit, take my word and read on.

Anyhoo.

Evidently, there's another drug that The Neurologist is going to try on a few patients. It's called Fycompa. Some of you long-time readers or epilepsy drug enthusiasts might remember that I wrote about this drug a few years ago when it was newly approved by the Almighty FDA. In fact, it was over two years ago that I wrote that post. Please click on it and read it, particularly the end because -- well -- because I told you to.

Are you finished?

Remember that I wrote that in 2012. Sophie was 17. Back then,The Pediatric Neurologist and I batted around the idea of trying it for a bit, but I just couldn't do it. It had become my philosophy to decline all new drugs for Sophie's seizures unless Jesus Himself offered it to us. Cannabis was not even a twinkle in the eye of -- well -- no one I knew back then.

Are you still with me?

So yesterday, February 10th, 2015, The Neurologist brought Fycompa up but also shared with me that THEY (always capitalize the word THEY when you're referring to The Medical Powers That Be, The FDA, The CDC, etc.) have learned that the drug can cause homicidal ideation or rage. Before we start wondering how, exactly, THEY figured that out, let's look at the website for the drug (the banner at the top of the website is reproduced above without the words because apparently THEY don't like you copying THEIR pictures). If you did your due diligence, my post from 2012 highlighted the following side effects of Fycompa:

The drug does have some known adverse effects associated with this drug. The most common ones are anxiety, confusion, imbalance, double vision, dizziness, gastrointestinal distress or nausea, imbalance – some of which may lead to falls on some occasions, and increased weight. The effects of Perampanel on tasks involving alertness and vigilance, such as driving, were additive to the effects of alcohol itself. Multiple doses of Perampanel increased levels of anger, confusion, and depression, particularly when taken with alcohol. Fycompa may lead to euphoria and other similar feelings in some patients. Thus, the drug will be scheduled in the United States. Final labeling and information is not yet available.

As you can see, euphoria is enlarged by me because it's sort of an operative word. 

Now go back and look at the Fycompa website today and notice the new BLACK BOX warning:

WARNING: SERIOUS PSYCHIATRIC AND BEHAVIORAL REACTIONS

• Serious or life-threatening psychiatric and behavioral adverse reactions including aggression, hostility, irritability, anger, and homicidal ideation and threats have been reported in patients taking FYCOMPA
• These reactions occurred in patients with and without prior psychiatric history, prior aggressive behavior, or concomitant use of medications associated with hostility and aggression
• Advise patients and caregivers to contact a healthcare provider immediately if any of these reactions or changes in mood, behavior, or personality that are not typical for the patient are observed while taking FYCOMPA or after discontinuing FYCOMPA
• Closely monitor patients particularly during the titration period and at higher doses
• FYCOMPA should be reduced if these symptoms occur and should be discontinued immediately if symptoms are severe or are worsening

Keep reading about suicidal ideation which THEY make pains to attribute also to epilepsy itself. The cynic in me or maybe just the batshit crazy person in me believes that THEY are covering their asses. Basically, epilepsy and depression are roommates, so if you up and kill yourself one day while on Fycompa, I imagine THEY will point out that you might have anyway, without the drug.  Notice as well that this drug is a Schedule III drug and remember that it is being prescribed for children and adults aged 12 and up. Remember that Marijuana is a Schedule I drug and that many in The Neurology World have denied many children who suffer from refractory epilepsy their blessing to try it and are only slowly coming round to even calling for studies, and that's only because families like mine are on the train that's left the station and THEY are trying to catch up.

But I digress.

My other favorite statement on the website is this: Anyone considering prescribing FYCOMPA or any other AED must balance the risk of suicidal thoughts or behavior with the risk of untreated illness.

Fycompa basically went -- in two years -- from being a drug that can cause Euphoria And Other Similar Feelings to one that can cause a person taking it to fly into a murderous rage. Oh, and you can take the drug if you're twelve years old.

You'd know what was up, basically, if I decided to try this drug on Sophie. Go ahead and kill me now, I'd say as I gazed into her big, dark eyes.

I can't count the number of times over the last couple of weeks I've read the words of citizen scientists, of scientists, of doctors and journalists and mommies and daddies and presidents and Oprahs and Willy Wonka himself blathering on about their trust in THE DATA AND THE EXPERTS.

What's my point? I think you know it. This is my experience, and I'd venture to say that it's tens of thousands of other people's as well. These are the facts. This is the world I interface with every single day and have done so for two decades, and it's insane.

Dealing with The System and The Book of Change

I've started throwing the IChing these days almost daily when I'm stumped by someone or something. I'm not Nancy Reagan, who evidently resorted to divination as a way to advise her husband in world affairs (don't quote me on that, though), but I have to say that the principles of what Jung called synchronicity are wildly informative and resonate for me. The simple ritual of asking a question, throwing the coins six times and then reading the hexagram is enormously healing in this weird, can't quite put my finger on it way. How should I respond to all this vaccination hysteria, my own near-PTSD symptoms because of it and the obduracy of people who refuse to believe there is nuance in science and the American healthcare system?***

Someone suggested that it's in the raging waters that one finds the answers. That was a perfect response to my post the other day where I alluded to the witch hunts of the seventeenth century and the particular practice of throwing the woman in question into a raging river to test her faith. If she drowned, she was a witch. Evidently, God doesn't answer the appeal of a witch or a real witch wouldn't call on God.

I might be a real witch.

Remember when I told you that after dealing with The System for twenty years, I've learned to do one thing a day? Otherwise, I'd go completely insane and jump into the raging river rather than be pushed. Right now, my task is to get MediCal to cover Sophie's drug deductibles. Evidently, this should have been happening for about five years which might have saved me tens of thousands of dollars, but the process to figure out where the snarls are, what the hold-up is, who's in charge, for what and when and how -- well -- it was too much for my little brain. Last week, though, I had a breakthrough. The pharmacist did a little legwork and MediCal denied it because they needed more information. I got through to find out what more they needed. They needed a list of drugs that Sophie had been on to prove why she needed Vimpat and Onfi -- just in case her neurologist was only idly prescribing these drugs when there were cheaper ones to be had. On Monday, I emailed The Neurologist and asked her whether she could draft a letter stating Sophie's drug history -- basically proving it. I gave her a sample letter, just to help her out. Can you imagine how much shit these doctors have to deal with regarding MediCal and private insurers? On Tuesday I called the pharmacist to tell him to hang in there. On Wednesday, I paddled around in the raging river a bit. Today, The Neurologist emailed me the letter (which you can see above), attesting to the many drugs Sophie has been on in her life and the necessity for the two that she's on currently.

Tomorrow, I'm going to call in a refill for the drugs and see what happens. I know you're on the edge of your seat, Reader, so I'll keep you posted.

I'm wading in.





***Hexagram 64

Before the End

The accomplishment of a goal is in sight. It appears that long-impending matters may be brought to fruition with an acceptable amount of effort. Increasing clarity surrounds the meaning of situations once thought to be obscure. At the time BEFORE THE END there is great promise for the future.

A unique and sage viewpoint is present in human affairs. Order can be brought to chaotic situations. Because you are now unusually familiar with the elements involved int he object of your inquiry, you can evaluate and arrange them in whatever way necessary to achieve your aim. It should be a relatively simple matter to bring together groups of people in social or public-minded situations. By penetrating the psyche of each individual involved, you can arrange to gratify their needs within the group mechanism and thereby gain their co-operation....

Yet, it would be a mistake to imagine that by achieving your aim you will bring matters to a close, that good judgement and order will prevail. The time BEFORE THE END can be compared to a lengthy trek over a high mountain. At some point, before reaching the peak, you can see in detail exactly how much further you must travel. You will know what is involved in reaching the top because of your experience in the climb so far. However, when you do reach the peak, which has been in your sight for many long days of effort, you will have done only that. You will have acquired little information and no experience whatsoever about the descending the other side. To rush up and over the top in an overly confident manner could bring disaster.

...The coming situation will be strange to you in every way, unike any that you have experienced. In the near future you will not be able to draw upon the wealth of your acquired experience, for in many ways the time will be nothing short of a rebirth.

Dispatch from the Cannabis Revolution: An Update from the Mermaid Files

Santa Monica Blvd.
February 2015

This morning Sophie refused to put weight on her right foot again. She had not had a seizure, so I don't think it was neurological. We couldn't deliver her to school like that, so instead I called the osteopath and got an appointment for later in the afternoon. Sophie took a short nap and woke up, put her foot down like usual and walked. Honestly, reader, it's crazy.

Speaking of crazy, I'm both energized by the support and love sent my way regarding this whole measles thing and suffering from what I think might be PTSD-like symptoms. I'm always amazed by the arguments people make, by how they choose to state their opinions and with what sort of authority. When I'm not retching, I'm laughing at people's trust in "scientific studies," and it's not a jolly laugh. I like to point out that after getting a fever and screaming for three days straight a few days after her initial vaccinations, Sophie, at a little more than two months of age, started doing weird things when she woke up and I tried to nurse her. When I took her to the doctor, she referred me to a neurologist, just in case. That's what she said. The neurologist couldn't see her for THREE MONTHS. Yes, that's the way the healthcare system works. A friend of mine who happens to be a billionaire (I'm not kidding) arranged for me to see a neurologist immediately (a week or so after the pediatrician ordered it), and Sophie was diagnosed with infantile spasms a few hours later. Yes, that's the way the healthcare system works. Then began the odyssey of 22 drugs and non-stop seizures -- but WAIT! I forgot to tell you that Sophie was IMMUNIZED AGAIN, at four months, with all the necessary vaccinations except for the DPT (in those waning days of the last millenium, the Pertussis vaccine was live, and they had determined that it was too risky to give Sophie again. Now it's acellular and called the DTaP). Sophie was immunized despite the fact that she was being weaned from high-dose steroids that we ironically had to give her through twice-weekly intramuscular injections and on a powerful non-FDA approved anti-convulsant. I think even the vaccine fanatics would agree that this was not a good medical decision. Shortly afterward, her fontanel began to bulge, she was rushed to the hospital, given a spinal tap and then diagnosed with a strange and rare complication called pseudo-tumor cerebri. The treatment for that was four more spinal taps to relieve the pressure on her brain. She was five months old.  I was 32.

Did I mention the 22 drugs over the next 19 years? Yes. How many of those drugs, taken in combination and given to an infant and then a toddler and then a young child were studied in such combinations and assessed rigorously over the long term? Guess.

ZERO, with an accent aigu and pronounced like the French do, quickly followed by what my Swiss German husband would say: Null, Null, Null (pronounced noool)


You know the rest of the histoire. Sophie will be 20 in March. I am 51.


Meanwhile, Sophie's seizures have dropped dramatically -- AGAIN! -- and while I'll knock wood three times to not jinx it, I think the Charlotte's Web higher ratio hemp oil is doing the trick. We've fiddled with the dosage and even weaned her a bit more from the benzo as well. Early reports (the much-maligned anecdotal ones) indicate that the children who do the best with cannabis are those on the least amount of drugs, particularly the benzos. Given that Sophie has been on Onfi for more than seven years and a pretty giant dose, we're weaning her very slowly. If all goes well, we'll start weaning her from Vimpat which she's also been on since it was approved for use in ADULTS in 2008. In 2008 Sophie was thirteen years old. It's unfortunate that the opportunity to try this medicine (which can be made from a plant by literally, anyone) is currently stymied by the unique collusion of politics/Big Pharma and physicians.

Listen to me. My faith in science is secure. My faith in the American medical system as it currently operates is ZERO, with an accent aigu.

Null, Null, Null

Cannabis Update Number 3,876,342 with a Profanity Warning

If you haven't noticed, I've retreated from the frenzy that is the medical marijuana/cannabis/hemp world. I told you a few weeks ago that I gave up my advocacy "position" due to exhaustion, burn-out and some other personal things. Sophie continues to take Charlotte's Web three times a day, and we still wait for the higher ratio oil that gave her the best seizure freedom. While not seizure-free, she is dramatically better than she was a little over a year ago, and as soon as her intestinal situation is completely stable, we plan on continuing the drug wean. Meanwhile, thanks to those who are not exhausted and burnt out, the fight for access to cannabis oil rages on. I watched the video below with great interest as several of my friends appear in it, but every time a physician came on, no matter how respected, my heart sunk. The arguments against this oil are, to me, bullshit, through and through, and it makes me almost sick to my stomach to hear them.

Ironically, the longer I live in this world of refractory epilepsy, the more seizures I've seen, the more drugs I've given Sophie and the more I observe their side effects and utter inefficacy, the more suspicious I become of the pronouncements of these estimable doctors, their condescension and obduracy regarding cannabis. I don't believe cannabis is a miracle. I don't believe it's a cure or know enough about it to call it a cure, but to argue against these children having the chance to try it, is unethical. Just the other day, a reader sent me an email expressing her desire to try cannabis for her nineteen year old son who is currently on four anti-epileptic drugs and still seizing hundreds of times a day. She told me that she didn't want her son to get high, and she told me that her neurologist did not approve of her trying the oil until more evidence came in. Her neurologist told her wrong information, and her neurologist works at Emory University. I'd say, good Lord! or even Holy Shit!, except that it so doesn't surprise me.

I don't mean to attack the medical world in its entirety. Obviously many truly do hold to heart the tenets of their profession and are beautiful professional healers. Plenty of doctors, including Sophie's, are incredibly sensitive and supportive. Many, too, are open-minded and curious. The rest of them? Well, let's just say that at my vantage point -- earned in twenty years -- I've learned to quite defiantly raise my eyebrows at best, and at worst, think: f**k 'em (another reason why it's probably best that I advocate here on my personal blog and not march into and out of political offices or worse, neurology departments, to beg for their mercy). I imagine that I'm a bit of a pariah in the World of Diplomatic Neurology. Again, at this point -- twenty years in -- I actually don't give a damn. I know that's a difficult stance to take on when you're new to this horrific game, and I can't actually advise people to do the same, but I can state, quite firmly the following things:

* If your child has refractory epilepsy, you have nothing to lose in trying cannabis oil.
* If your child is on multiple drugs and still seizing, the drugs are not working. It's not the moon, an impending virus, the fake candle fumes, your relationship with your spouse or family dynamics. When drugs work, seizures stop.
* If your child is on multiple drugs and still seizing, and your neurologist tells you to add another one, that's unethical. In twenty years, I have never met a single child with refractory epilepsy whose parents have found a magic pill to control his or her seizures for the long term without side effects.
*I have met many children who have tried upwards of twenty drugs with no success whose parents then back off so many drugs, accept the increased seizures and better quality of life, try cannabis and see its positive effects.
* That is our experience (above), and it's a travesty that just because I live in California where the product is available and legal, we get the relief.


Whew. I got that off my chest.



I can't seem to embed the video/documentary attached to this very informative article in TIME, but here's the link:

Pot Kids

Cannabis Oil Questions Answered #3

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

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

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

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

Questions?




Other Cannabis Oil Questions Answered:

# One
# Two

Cannabis Oil Questions Answered, #2

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

Sophie in motion

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

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

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

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

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

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

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

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

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

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

Cannabis Oil Questions Answered, #1 in a Series

How does Sophie take her medicine?

Charlotte's Web, as we receive it from Realm of Caring California, is an olive oil-based high cannabis/low THC product that we draw up from a small, dark bottle in a simple syringe (needle-less) and put in Sophie's mouth. It smells, sometimes, a bit like classic weed but is relatively flavor-less, and Sophie has no problem swallowing it, three times a day. She has had a lifetime of swallowing pills and does that, sadly, like a pro, but there's nothing like giving her a medicine that actually works.

Reader, if you have any questions that you'd like me to feature here on the old blog, please leave them in the comments.

How We Do It: Part XLIV

When a doctor tells you you have silent migraines, it's like asking someone on the street which way to the station and they say, I think it's that way, and point toward an urban horizon. But they're not sure. My policy is to never follow directions from someone who isn't sure. Keep asking until you find someone who knows, even if it's awkward and insulting to the person that thinks you should probably, maybe, turn left.

Stephen Elliot, via his Rumpus emails 

I watched Sophie have a very big seizure yesterday. She was sitting on her bed when it started, as was I. I was reading Eleanor and Park aloud to her, wondering if it was all right to read aloud the words fuck and shit which were sprinkled liberally throughout the first chapter. She's nineteen years old. I skipped over the word retard, flaming off the page. Sophie fell over seizing and I put down the book and said it's ok, Sophie, and then I watched her grimace and jerk, her thin legs and even thinner feet stiff, her toes curled. She made a guttural sound even as I spoke softly and watched her lips turn gray and eyes blink. I looked out the window, at the light falling on the drifting sun mobile that hangs from the silk floss tree. I probably blinked a few times and wondered at my own dissociation even as I dissociated. No one knows what this is like unless they know. When it first started happening, when I asked for direction and got it, I trusted the way. I gave her this drug and that one. I measured sticks of butter and whipped cream with slivers of strawberries, spooned it into her mouth as she paced restlessly around her room, starved. I removed all fragrances and chemicals from the apartment, the direction an Orthodox lady gave us using a pendulum in upstate New York. I removed dairy and added long-chain fatty acids, probiotics before they were called that, walked down paths while being mocked (I know you did, behind my back). I don't remember which year it was when I realized that the person giving directions wasn't sure, but I stopped taking them. If you stop taking directions, you wander. You wander down different paths and up staircases in offices on residential streets. A man with a ridiculous name taps his long fingers together and tells you, Help will not come from a traditional source. It will be natural and near-spiritual in nature. You forget that direction until you remember it. It's a feeling in the pit of yourself, not in an organ. You dissociate from it until you can't any longer, and then you look. You find someone who knows, and that someone is you. It is awkward and insulting to the others when you find the way, but you keep walking it. You give her the oily extract from the plant, a spiritual plant. Sophie only had the one big seizure, and it came after nearly three weeks with none. Go this way, says the sun as it twists in the wind under the silk floss. Keep going this way.

My Thoughts on the Fly: Sonjay Gupta's WEED 2: Cannabis Madness

from Spike Lee's great movie Do the Right Thing

My initial thoughts on the CNN/Sonjay Gupta special on medical marijuana because I can type faster than I can talk:

1. No one spoke about the dart board game that neurologists currently play with epilepsy drugs. I've had doctors tell me that prescribing epilepsy medication is "just as much an art as a science." 
2. I think any shred of hope Governor Chris Christie had to be President of these United States is officially dashed. I've always loathed the guy, but I have to say I felt almost sorry for him given how CNN chose to edit his parts in this story. Yikes.
3. Many emotions going through my head -- the obvious whys and what ifs for our Sophie, anger that political bullshit has stymied this perhaps revolutionary treatment for our children, cynicism that Big Pharma is chomping at the bit, dismay that people weren't really educated on this special about the often devastating side effects of current epilepsy treatment, including surgeries like hemispherectomies. Seriously, people -- how many people do you think are walking around with one half of their brains that knew what the long-term effects of this might be?
4. Grateful that after working our asses off educating ourselves about medical marijuana and finally getting it (thank you Realm of Caring, Ray Mirzabegian, Jason David and the Stanley brothers, Sophie is doing PHENOMENALLY WELL. She was having up to five tonic-clonic seizures a day and hundreds of myoclonics and partial complex episodes as well as atonic drops. She is now going literally WEEKS WITHOUT A SINGLE SEIZURE, and when she does have one, they are much less severe and she recovers quickly. We have been able to begin weaning her from one of the most addictive anti-epilepsy medications in the arsenal, and it hasn't been nearly as difficult as it has been in the past. (Sophie has had trials of nineteen drugs in her nineteen years).
5. Our family is in a sort of state of shock about all of this, I think. We kind of don't know what to do with ourselves. When I watched the special, I teared up a bit for Vivian and her family, but my heart was broken for my family, for my boys and for Sophie, who have endured this shit for so many years, as well as so many other families.
6. What the hey, Obama: DO THE RIGHT THING.