Pick Your Poison

This might be a record for my not blogging -- more than a week since I've bloviated about the various goings-on in my life and not for lack of them. Perhaps I don't feel like talking anymore about how Sophie has been struggling, how the CBD and the benzo and the sleep aid don't seem to be doing the trick, how I don't know really know what the trick is, anyway, but what I do know is that how many seizures is a relative thing, the counting of them, that is. A relative thing. Not something related to something else but rather relative in comparison. I scroll through my social media and between the kids dying (yes, dying) and the regular shit that is Terrible America, Sophie's three to five seizures (big ones) a day (yes, everyday) don't seem too bad. They're everyday or every day. If someone (Sophie) has anywhere from three to five seizures (big ones) a day, is anything working at all? Anyway? I have a friend who keeps meticulous counts of her son's seizures and is able to track, exactly, what affects them. He had seven in February, she might note, and after we increased his CBDa, only three in March. She agonizes over three, I think three! (Imagine three!) And I continue to draw up the syringes of benzo, syringes of CBD oil and CBDa oil (plunged into her mouth) capsules of sleep aid that I toss in there (her mouth) and the cup, quick, to her lips.

Swallow. 

So. The Nice Neurologist suggested we try either Depakote or Lamictal. They're very good drugs, he said. Has she been on them? He asked. I said, Oh, yes. She's been on both. The Depakote in 1995, when she was six months old, diagnosed for three months, drug number three. And it didn't work, so we took it right off and tried the infantile ketogenic diet next (plucked smack dab out of People Magazine, check it out), and then phenobarbitol and then vigabatrin, and should I go on? The Nice Neurologist said, Oh, and Lamictal? I said, Yes. Lamictal for about seven years. And it never worked.

Reader, I know you wonder why? and your why is why would you give a drug to your daughter for seven years if it didn't work? And I honestly don't have a sensible reason to give you, other than The Neurologist At The Time not having any other options and perhaps Laziness and perhaps because of The Difficulty of Weaning or perhaps The Odd Chance (A Neurologist would have suggested this one) that the drug (Lamictal) was keeping her to only two hundred seizures a day instead of five hundred seizures because -- it's coming -- it's relative.

Let's make a long story short. Let's make a deal. I picked Depakote. The reasoning: it's been nearly 25 years (!). We gave it to Sophie last Wednesday night and again on Thursday morning, Thursday night and Friday morning. She slept all day on Thursday, woke briefly for breakfast on Friday morning and slept all day Friday. She could not be roused for the entire day on Friday and had an alarming amount of congestion above her chest and below her mouth (in her throat) which was probably increased secretions. She could not be roused. The Nice Neurologist relayed through his nurse that we should stop the Depakote and talk tomorrow (Saturday), so while I generally worry about Sophie dying at least once a day, I worried all day, every moment, actually, even though relatively speaking, I am not scared of death.

Sophie had no seizures during this period, but, to be fair, she was practically comatose. Being seizure-free, I have found, involves a trade-off, and this is where the relative part comes in.

I and the Nice Neurologist had several short (not sweet) conversations over the next two days regarding what to do. What to do about Sophie? I think she'll need a smaller dose, he suggested, and I pointed out that the pills he'd prescribed have no score so they can't be cut in half. The liquid form! he said, and I'll call it in! I was walking down the street with Sophie in her wheelchair. She woke from her comatose state on Sunday, bright-eyed but batty, agitated, the drug clearing her system. I imagined a brain cleared of chaos and cobwebs but unsure how to proceed without either. I'm excited! The Nice Neurologist said. I said, Excited? and he said, It doesn't take much to excite me! and I thought, excitement is relative.

I picked a poison. Now let's see what happens.

Berries in a Bowl and a Report From the Final IEP

I know I'm supposed to be grateful for drugs, but I'm not. Berries in a bowl are beautiful. When I open a new bottle of Onfi, the smell assails me. Milky. Sweet. Touch your finger to it and lick it. Acrid. Poison. When Sophie was a baby, I gave her the drugs and never felt grateful. I felt like I was giving her poison. I never could get out of my head giving drugs. Even today, when I pushed the syringe adaptor into the top of the new bottle, I wanted to gag at the smell. I didn't feel grateful.

Which has been said more?

1. Berries in a bowl are beautiful.

or

2. Drugs are poison.






Speaking of drugs, please visit and give some love to my article on Marijuana.com. I'm only going to be working there for another week or so (will explain when my contract is officially over) and would appreciate your enthusiastic response to it, if you're so inclined. It'd be like berries in my bowl.


Thank you to those asking how the Final IEP went. It went -- well -- finally. The "well" is an aside and not an adjective. An Assistive Technology person showed up for the first time ever and acted surprised that no one ever had before. When she said something about a box being checked off properly, I came down from the wire where I'd been doing my thing up in the air so high, ducked my head under the table and took a swig of my Bloody Mary. I leaped back up and did a little twirl. The OT said that Sophie didn't really need services but that she would continue to come in for a 30 minute consult once a month. I did a pirouette, a graceful dismount and took another swig of the Bloody Mary. I might have told her that The System had failed my daughter before jumping off the table into a handstand on the wire. The PT was a woman but spoke like a mansplainer. I learned about Sophie's need for weight-bearing and exercise. Despite a particularly excellent somersault off of the tightrope, I took two swigs of the Bloody Mary when she described a new bathroom contraption that she'd ordered only after I'd objected earlier in the year to the discovery that Sophie's aides were changing her diaper while Sophie stood up because there was no changing table in the bathroom. The P.E. teacher expressed satisfaction that The District had finally responded to her request to not give Sophie an F in P.E. because of scheduling difficulties. When I offered her a swig from the flask, she declined but said that when she's retired in two years, she'd meet me out for a drink. We all ate donuts, and when it was finished, I took a bow.

Blandeur or Grandeur?

We're still weaning the Vimpat, and tonight I went to CVS to pick up Sophie's refill and even though I'd girded my loins and steeled myself for something to go wrong, when it went wrong it still took me, if not by surprise, then for a fool. I'm not going to re-write that silly, silly sentence. I guess it's good that The Government and The Corporation are colluding to make it even more difficult to get your Addictive Narcotic Substance Prescribed By the Medical-Industrial Complex Worker, but honestly, Reader, where I used to be a fuming tiger at the counter I am now a whimpering, beaten, nakedly desperate soul.

Here's a poem:


BLANDEUR

If it please God,
let less happen.
Even out Earth's
rondure, flatten
Eiger, blanden
The Grand Canyon.
Make valleys
slightly higher,
widen fissures
to arable land,
remand your
terrible glaciers
and silence
their calving,
halving or doubling
all geographical features
toward the mean.
Unlean against our hearts.
Withdraw your grandeur
from these parts.

Kay Ryan

Smells Like Bullshit, Episode 33,456,897

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

I'm feeling fine.

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

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

Lundbeck.

$38,781

Guess what drug Lundbeck makes?

Onfi.

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

You can't make this crap up.

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

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

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

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

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

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

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

How We Do It: Part LVI

Somewhere along the I-5 in parched California

This morning I lay in my bed in the darkness with halfway thoughts. The light came only halfway into the room through the lowered slats of the blinds. If I live to be 85 years old, I'm only halfway. As children we are as unaware of the halfway as we are, at the halfway, of the end. Thresholds are always that. Liminals. I heard a breath, a halfway cry, a grunt. I slipped my robe on and walked to Sophie's room. She was lying on the floor, face-down, her arms in a fencing pose, quietly seizing. I turned her over, wiped the drool from the side of her face, the tendrils of wet hair and picked her up, lay her on the bed. Sophie has a seizure every morning, and I imagine it happens in the halfway when the light and the tides and the moon and the shifts of the earth on its axis conspire to affect the most exquisite, the tendrils of nerves, reaching for all of it.  She is halfway off the drugs she was on one year ago. She will be okay.



it launched forth, filament, filament, filament 
by itself

Walt Whitman

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.

Surfing Around With Admins, Internecine Wars, Opioids and Arthritis

Given that it's nearly 11:00 Pacific Time, and most of you are already in bed and might be reading this tomorrow morning, let's just surf around tonight.

First of all, did you know that the FDA recently approved the use of Oxycontin for patients aged 11 to 16? Unless you've been living under a rock, and that's perfectly acceptable given what's going on in this crazy old world, oxycontin is a long-release painkiller that acts upon the brain like heroin. Here's the statement, reported by NBC news:

Dr. Sharon Hertz, director of new anesthesia, analgesia and addiction products for the FDA, said studies by Purdue Pharma of Stamford, Connecticut, which manufactures the drug, "supported a new pediatric indication for OxyContin in patients 11 to 16 years old and provided prescribers with helpful information about the use of OxyContin in pediatric patients.

Cue Mrs. Braddock's laugh.


Well, you know where this is going, right? I'm not going to put down anyone who wants to alleviate the suffering of a child in pain, but reeeeeeeeely? Raaaaaaaaaaahly?

As you know, my tiny little mother mind™ has been working overtime with countless other minds, far greater than my own, trying to lobby and persuade The Powers That Be that the efficacy of Charlotte's Web, of cannabis, of medical marijuana, etc. is far stronger than anecdote and certainly not attributable to the placebo effect, that it's a plant that's been used for thousands of years, that there are studies -- oh you know what I'm saying.  But hey, what do we know? What do they know?

Yesterday, I visited a prominent orthopedist in Beverly Hills, a young and handsome doctor who probably replaces the knees, shoulders and various body parts of a plethora of celebrities given the location of his office. Last week I developed a bum knee overnight, was driven, quite literally, nearly to my knees one afternoon with a stabbing, horrific pain, a sort of grim reminder that yes, Elizabeth, you are turning 52 years old on August 27th and have taken for granted your solid southern Italian peasant ancestry and were over-confident that these strong genes were somehow going to protect you from the vagaries of age. To make a long story short, my right knee has a touch of The Arthritis, but not enough to warrant any sort of treatment, which given that it'd be one of those gigantic steroid shots that I understand work but that actually spark up the primitive part of my brain that recalls injecting high dosage ones into my daughter's baby legs two decades ago -- I declined. I did ask the good doctor, though, about cannabis and its anti-inflammatory effects and if he'd heard about any of that. He gave a short, impatient laugh, waxed on a bit about how the claims that it cures everything! couldn't be taken seriously and that there wasn't any research, yadda, yadda, yadda.

OK.

The weird thing is that this headline:

FDA Approves OxyContin for Children as Young as 11

(read the whole article here) just doesn't surprise many of us and turns our already cynical and tiny little mother minds™ into tiny, little obdurate bricks. Show me the studies -- double-blind, placebo controlled, long-term studies of children.

Let's catch another wave, shall we?

Back on the ranch -- the marijuana ranch, that is -- I got into a little sparring with the self-described admins of a group on Facebook called Pediatric Cannabis Therapy. These admins (and really, why do we have to shorten the word adminstrators to admins?) decided that discussions about Charlotte's Web Hemp Oil (CWHO) and the Realm of Caring (ROC) are no longer allowed. I wish I could quote the rest of the message that they posted, but that wouldn't be ethical for a closed Facebook group. Suffice it to say that it was riddled with not just grammatical errors (which, admittedly, drive this tiny, little mother mind™ batty) but vindictive statements and lies pitting advocates of CBD legislation against those who hope for whole plant legislation. First of all, these two groups need not be mutually exclusive, but according to Pediatric Cannabis Therapy's new rules, they are. The amount of work that Paige Figi, the Stanley Brothers, Heather Barnes Jackson and a virtual army of volunteers in nearly every single state in this country has done in a a very short amount of time -- to help sick children get access to medicine -- is nothing short of astounding and admirable. CBD-only laws are not perfect ones, and most of us believe that they are but tiny steps toward a larger awareness of this plant's many benefits. It's been more than 80 years since marijuana was basically forced underground for political and economic reasons, and during the last sixteen months, enormous progress has been made by pretty desperate women and men whose children's lives are at stake.That being said,  members of the Pediatric Cannabis Therapy group were warned not to discuss Charlotte's Web by name or they'd be asked to leave the group. Insults flew for a bit and while I dropped in here and there (you know, surfing the waves, trying to stay cool, look cool), I finally unjoined the group. The crazy talk has happened before, and I just can't be bothered with it anymore. While perhaps boring to those of you who have no interest in The Marijuana Wars, today I wanted to suggest that those of you who do have an interest should probably avoid the Pediatric Cannabis Therapy Group for anything but the lowest form of entertainment -- a sort of Monty Pythonesque Office of Arguments:



I will say that many hundreds of decent people exchange valuable information there in spite of those pesky admins destroying the synergy (another ridiculous 21st century word that they didn't use but that bugs me so much I thought I'd throw it in there with the dirty bathwater), so if you decide to stay in the group or choose to join the group, I advise you to steer clear of The Admin Who Is Not a Beach Boy or certainly don't talk directly about The Product That Cannot Be Named.





After that shredding, I'm prone out.

Cowabunga!

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, #4

What are the side effects of cannabis on Sophie?


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

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








Other Cannabis Oil Questions Answered:

# One
# Two
# Three

Head Down

Never a fair-weather fan

Even though I woke up this morning to the sound of Sophie having a really big seizure, I am encouraged by the last few days. She has had markedly fewer seizures and looks brighter. I guess the brighter part is subjective, and I could possibly be wishing it so, but I've been doing this thing for nearly two decades, so I'm going to go with definitely brighter. Isn't there a whole school of people who choose to be happy? She's brighter. She's having less seizures. There. I typed that in regular font. I feel slightly less frenzied but thoroughly weird. Anxious. I learned at the conference last weekend that about 15% of those who try CBD fail, particularly those who are on other medications or high doses of medications. These kids do better as the medicines are weaned, particularly the benzos (Onfi is a benzo). If any of you have ever weaned a benzo from an epileptic child (or yourself, actually), it's horrific. I've literally weaned Sophie from various benzos over periods of months and even years. I'm reminded that there's still Charlotte's Web to try, if this particular tincture doesn't do the trick. However,  I'm also feeling afraid. The reason for that is all the rumbling on the pediatric cannabis Facebook page about Big Government and Big Pharm -- how they could possibly get their hands on the stuff and make this whole thing a big, giant clusterfuck. I admonish myself not to be a conspiracy theorist, and then I think about our experience with anti-epileptic drugs -- getting them, paying for them -- the whole Onfi clusterfuck (twice, now, I've used that perfect word!!!) that I wrote about ad nauseum on this here blog.

One day at a time. Choose to be happy. Wean slowly, far more slowly than the Powers That Be tell you.

Anywho.

My head is down, figuratively and literally. I blew-dry (or is it blow-dried) my hair this morning, a rare, if not singular, occurrence. I did it like I used to do when I was young. I hang my head upside down and just let that hot air go. This is all part of my transition into cronedom, believe it or not. I'm going to be the crone with great hair. Also, Oliver is taking a mental health day from school which means my mental health is somewhat in question. Henry, god bless him,  is at school, excited that tomorrow is Halloween. He is planning on wearing a banana costume to school, a costume that cost $12.99 on Amazon. Thank god for easy kids with uncreative mothers. Oh, and Sophie is home because we have an appointment to see The Adult Neurologist. Now that she's eighteen, we must make that transition to Adult Neurology.

Yiddy hoo.

Medical Marijuana Recap: Part 6,213,894

Sophie, 2006

I keep getting emails, letters and texts from people wondering where we are on the Medical Marijuana Quest, so I thought I'd do another recap. I'll do it all official-like with bullets and save one for the end for myself.

• California's laws are quite lenient regarding medical marijuana. It's ridiculously easy to acquire a "card," and I've done so.
• It's ridiculously easy to go into any number of medical marijuana stores that pepper our streets, for good or bad, and purchase whatever type strain of weed you desire with the EXCEPTION of the very high CBD to THC kind that people with severe seizures are finding helpful
• This particular kind has several names (the most "known" right now due to the recent publicity is called Charlotte's Web) but it is currently not available in California as far as I know
• I repeat: The particular high ratio of CBD/THC is not readily available in California.
• Charlotte's Web is available in Colorado, but you must move there, establish residency, apply for a medical marijuana card, get two or three doctors to sign off on it, and then get on a waiting list for Charlotte's Web
• I am not planning on moving to Colorado for various reasons, including the most important: I have faith that California will soon have the right weed for Sophie and that it'll be available here. My faith is not religious but based on the forays I've made over the last few weeks.
• I am on a waiting list that an industrious Californian is compiling as he works toward getting the stuff grown and made here.
• I have learned that not just any high CBD/THC tincture you can get is worth trying. It must be tested by a reliable lab and be free of pesticides and fungicides.
• The above bullet is one of the reasons that it's a travesty we don't have regulation of medical marijuana given its efficacy in treating a myriad of diseases and conditions.
• I am extremely resentful that if you are a seventy year old male and can't have an easy erection, you can go to your doctor and get a prescription for Viagra, but I can't get a tincture of CBD for Sophie without moving to Colorado.
• I find it repellent that I have given Sophie massive quantities of lethal barbiturates and other controlled substances over the last eighteen years that have done absolutely nothing for her seizures but am finding it so very difficult to at least give this apparently benign treatment a chance.
• Not to mention the tortured thought of what might have been if the stuff works, and Sophie gets some relief.
• Despite the many offers, you will probably not be able to find the stuff we need any time soon nor will any of your friends. While I appreciate the offers to ask a friend, mail you what I can find, etc., you would be better off working in your own states to help remedy current draconian drug laws.
• That being said, I have a couple of friends who have volunteered to be my personal assistants/sherpas, and the work they're doing on my behalf will leave me happily indebted for all eternity. Thank you, MB and S.
• That's a bullet for me.

Parenting, The Internet, Sex, Drugs and Rock and Roll

I know it's probably not in good taste to post a photo of myself in front of the vodka display at my local grocery store, however facetious, but I just wanted to let ya'll know that this is what I look like after an emotional discussion with my teenager** about the internet, Facebook, bad language, sex, drugs and rock and roll. Those of you who have a child with severe disabilities AND a child or two or three or more without might think with a teeny tinesy part of yourself that you're going to get a pass, perhaps, on the more uncomfortable parts of parenting a normal teenager. There might be a teensy tinesy part of yourself that thinks the Universe is sometimes ordered or that you have a divine sort of perspective, especially given the shit you've been doing or going through as an extreme parent. You might even think -- with a teensy tinesy part of yourself -- that the good lord above will give you a break and your non-disabled children are going to be a piece of cake. At least I did. Well, a teensy tinesy part of myself.

Call me silly, call me naive -- hell -- call me an incipient alcoholic.




**No need to feel alarmed. All is well and neither of my boys are in any trouble whatsoever (other than the damn laundry basket filled with their clothes is still sitting on their bedroom floor and not put away).

The letter p, Flemish paintings and rain with some f'-bombs

The Love Potion - 15th c. Belgium

It's raining in Los Angeles this morning, a soft, gray rain that doesn't stifle the crows squawking outside my back door but relieves the lot of us from the pressures of sunshine. I ripped a page off my tiny desk calendar, a copy of the painting that I posted above. Isn't it weird and fantastic? The man at the door, the curlicues, her shoes -- what's happening here? I have a few new readers on my blog or old readers who've chosen to comment. Welcome! One of them pointed out that she received the same email in her inbox about the drug Perampanel, the one I mused about the other day, wondering why its other name was Fycoma. Well, it turns out that I missed a letter p and that the drug is actually called Fycompa. So much for our wondering who the hell named an epilepsy drug suggesting the deadening of the brain. Here's the thing, though. I looked up compa on the Internets and saw this definition in Urban Dictionary:

1. compa: Spanish slang for compadre. Ei compa, get you ass over here.

2. compa: Pocho slang for compadre; pal, chum, dawg. Yo compa, bust out with the yesca... 

Fy in the Urban Dictionary stands for Fuck Yeah! and even Fuck You! 

Fycompa, then, could possibly suggest that after luring you to take it -- get you ass over here! -- there's the very obvious possibility that you will be seizure free -- fuck yeah! -- or fucked over -- fuck you!

New Reader, I stand corrected but ever valiant.

I should have been a drug namer, don't you think?

The Drug Mule Muses

I woke up at 5 this morning in the dim gray light of daylight savings and felt the delicious release of the too- early rising, when you don't have to get up for almost two hours! and while I'm usually able to fall soundly back asleep, I lay instead on my back and pondered. I thought about Oliver and his school troubles, his -- what I'm now deciding -- dyslexia and whether the school he's in is sufficient in resources to deal with it. I thought about a school some distance from us that is known for its excellence in the area of learning disabilities but is also quite expensive -- far too expensive for us to afford unless we were to apply for financial aid for which I'm not sure we'd qualify. That thought led me to the looming property tax bill sitting on my desk and the arranging and re-arranging The Husband and I will have to do to pay it on time. I was not yet agitated, actually, by these thoughts as they were free-flowing, one into the next, and the next was the high school tour Henry and I are going on this morning, one of the three choices we are considering for him for next year. What if he doesn't get into the school of his choice? I thought and let that one ride by, the anxiety it produced a fluffy, self-indulgent kind, one that I'm aware of and try to remain vigilant about because I know I would be sucked into the Where is My Child Going to School Bullshit that so many of my peers find themselves in, a vortex that I'd rather watch with equanimity from the outside, so redolent is it of prestige and elitism and privilege. As the clock ticked toward six o'clock, I read some emails on my phone, one of which described a new epilepsy drug called Perampanel that I hadn't heard about. Lest you think me an idiot to pursue such reading before I'd even gotten out of bed, I clicked the phone and email off and lay back down, closed my eyes, did a silent meditation and drifted off to sleep. 

The drug mule is dogged, though, and plods along with dolor, her burdens secure on her back. Later, when the children were off, I put on my straw hat and began to chew. I read that Perampanel, otherwise known as Fycoma is a novel drug showing some promise with resistant epilepsies. The word novel is one that is used quite often in the epilepsy/pharmacology world, and it makes me shiver. I'd rather associate it with the beloved objects that lie everywhere I can see in my house, or with the Russians, whose novels are quite novel in their depictions of the tragedy of the human condition. But I digress. Why is this drug called Fycoma? I muse and scan the rest of the article, dismissing the other usual words of description -- unknown mechanism of action -- noncompetitive antagonist of a particular glutamate receptor known as AMPA -- those of you in the world of drug-resistant seizures will perhaps identify with my lack of enthusiasm only infinitesimally tinged by hope. The following paragraph came at the end:

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 a scheduled in the United States. Final labeling and information is not yet available.

The drug mule chews on these words placidly -- anger, confusion, depression, euphoria and other similar feelings -- and then spits them out, wet and sour, tumbling to the ground. The word coma should not be used in a name for a drug meant for the delicate wiring of the brain, the drug mule thinks. 

Fuckycoma would be better, don't you think?

Drug mule, mewling and Jesus

So, it seems like it's that time again. Given that Sophie is having up to three big tonic-clonic seizures a day, again, and also moans and hums an inordinate amount of time, her drug regimen is suspect. Is it the Vimpat? Is it the Clobazam? I have no idea, although I'm certain that the weaning of one or both will be brutal. I'm trying to have the energy to figure it out and take action but feel slow in the doing, slower than I ever have before. I've made the calls, done the rounds and am thinking of doing the whole alternative thing, again -- the homeopath, the Chinese doctor, the osteopath.

Know any shamans?

These are the drugs that Sophie has been on during the last eighteen years:

ACTH

Prednisone

Mysoline

Nitrazepam

Phenobarbitol

Depakote

Depakene

Klonopin

Clobazam

Zonegran

Lamictal

Vigabatrin

Topamax

Diastat

IvIg (technically not a drug, but a treatment)

Ketogenic Diet (not a drug but a treatment)

Felbatol

Keppra

Banzel

Vimpat

Clobazam

The efficacy of nearly all of them has been questionable; the last two were desperate measures as I'd said that I'd only try a new drug again if Jesus himself offered it. And we all know that Jesus doesn't offer drugs to children who seize.

Reader, if you're as familiar with anti-epileptics as I am, would you wean the Vimpat or the Clobazam first?

Drug Mule, Part 2: The Apparent Chicken

Evidently, I'm not the only one who is resorting to un-kosher means toward procuring drugs for one's epileptic child. In the comments I received yesterday after posting about my call to a Canadian pharmacy and in many private emails, I got offers from Canadians to pick up the drugs, offers from those who live in the Pacific Northwest to drive up there and pick up the drug, offers from Europeans to get the drug and send it, information from Americans using Mexican internet pharmacies where no prescription is needed, and efforts by my Rite-Aid pharmacy guy whose name is the name of a country to badger Medi-Cal about coverage. While fantasies of fleeing the country to Vancouver -- alone, on a plane!!! -- danced through my head, my inclination toward being an outlaw are mainly just that -- fantasy. I might be an outlaw at heart, but on the outside, I'm a chicken and a nerd. Before I go to Canada, I'm going to keep pecking and pecking at the powers that be in hopes that not only will the drug get picked up by insurance and Medi-Cal for Sophie but for the countless other kids who need it, too.

In the meantime, my father made the brilliant suggestion to order as much of the drug as I can and have it delivered from Canada before Friday when the law goes into effect.

So that's what I did. I called the pharmacy and filled out some forms and called The Neurologist and called the pharmacy back and right now, my fingers are crossed that I'll get an ample supply of The Drug that will cover Sophie until I can really lobby to get it added to the insurance company formulary.

When I went on my walk today, I mused about the frenzy of the past couple of mornings, all the calling and back and forth and anger and frustration. I thought about Big Pharma and its strangulating hold on healthcare and the proper role of medication for sick and diseased children and adults. I thought about how quickly conservatives throw around terms like "the marketplace," "vouchers for medical care," "free enterprise," and I thought above all, that if it's not bullshit it's certainly a bunch of chicken shit. I don't know what the answers are, and I certainly am going to keep on pecking around, but it all feels as ridiculous as that chicken suit one of my boys is wearing in the picture above.

Drug Mule

So, remember my post about the drug called Clobazam that is the one drug that sort of kind definitely helps Sophie a bit with her seizures? If you don't, stop here and go there and catch up.

Finished? Good.

This morning I spent a good amount of time working further on this problem. The work involves phone calls, mainly -- to MediCal, to Anthem, to Rite-Aid and, finally, to a pharmacy in Vancouver that another blogger privately emailed me about as being the source for the clobazam that she'd been using. I spoke to a man I'll call Bill who was very kind, very soft-spoken, very Canadian, down to the ehs sprinkled throughout the conversation. He told me that if I were to get the drug from Canada, it would cost me $63 a month for Sophie's dosage.

$63. If you went back to my other post, you'll remember that I am currently paying $390.24 (minus $50 from a coupon that the drug company has issued me to use for 12 months, and I'm on month ten). If I did the math correctly, the price I'd pay to get the drug in Canada is 83% less than here in the USA.

Fantastic, right?

Well, it would be fantastic, except that Bill told me that AS OF FRIDAY, THIS FRIDAY, the FDA will no longer allow the Canadian pharmacy to ship the drug to the United States. Bill didn't know why, and neither do I, but I do have my suspicions (and this isn't the grassy knoll conspiracy-type suspicion).

I began to whimper a tiny bit, so Bill suggested that Vancouver is a beautiful place and really only an hour and a half from Los Angeles. He suggested that I could always hop on a plane and come up and that the pharmacy would deliver the drug to me right at the terminal because the pharmacy is right next to the airport. He told me that it's beautiful in Vancouver, that they have a world-class resort that hosted the Olympics (I knew that), and before long, I was happily chatting about Canada, making a date with him to have a drink when I traveled up to pick up Sophie's anti-epileptic.

Just kidding on the date part, but the rest is the absolute truth.

I'm  not going to use up the white space on this post to say, again, how messed up this country's healthcare situation is. What the hell is going on that I have to do all of this shit to get a drug for my daughter's seizures, a drug that is freely available in other countries at a reasonable price?

When I hung up the phone, I decided to call The Neurologist and see whether we can get a three month supply mailed out before Friday and the new law goes into effect. Then I called my local Epilepsy Foundation to tell them this absurd story and ask them whether they can help. They were interested. Then I fantasized about becoming the Erin Brockovich of Big Pharm. Then I thought about the life of a drug mule and wondered if this would be my breaking bad moment. Then I went on Cheap Flights to see how much airfare is to Vancouver. Now, I'm typing this and listening to the large plumbers in overalls installing a new water heater in my kitchen that is going to cost me $1,000 which would be 2.5 months of clobazam in the United States and 15.9 months of clobazam in Canada. I'm doing this math to be more like Bill Clinton at the DNC last week.

Are you with me? (I think that's what Clinton said, a number of times, during his speech, while crooking his long and elegant finger at me)

Are you with me?

Any thoughts for the breaking bad drug mule?

Side-show

Even my mother has suggested that I write a children's book  -- you know, something to take my mind off what I usually write about. I can't tell you why I write what I do write, other than that I'm here to tell a story and right now, it's my story to tell. I have an email subscription to Medscape, the godawful site that sends pertinent medical information my way. Whenever something in the neurology field, or more specifically epilepsy field, pops up on Medscape, I get a notice in my inbox. Last night I got this:

Here are the newly published articles in your area(s) of interest for July 31, 2012: Epilepsy Seizure Freedom: How Many Antiepileptic Drugs to Try? Medscape Neurology   ADD MORE TOPICS »

This cracked me up -- literally made me laugh out loud. I immediately envisioned myself, sitting at the breakfast table with my cup of coffee, musing on how many antiepileptic drugs to try. I imagined a street game of sorts, maybe even darts, a jocular list of dos and don'ts, pros and cons. There would be a carnival barker, someone to call the shots -- will she try one more? 


How many epileptic drugs to try?

I might as well be a snake wrangler at a side-show. Humor me, Reader. I might just be going insane.

Kids, Soldiers and Drugs

Boys in the trenches, World War I

I have a lot of friends whose kids are on psychotropic drugs. These are seemingly normal children, not those with special needs, and their problems range from attention deficit disorder and ADHD to depression and more serious issues of mental health. I'm in no position to judge this, cognizant of the fact that nearly all of those friends are wonderful, careful parents doing what they believe is best for their kids. But every time I read an article like the ones I've linked to below, I wonder. What, exactly, is going on that so many kids are being drugged at ever younger ages? Is this necessary? Is this a cultural shift? Is this a new "normal?" Is this going to backfire eventually? Is this a result of the pharmaceutical/industrial complex? Is it all about money? Are these kids at an advantage or have we created a monster?

I come at this predicament from a very biased position, of course -- while both my boys are free, blessedly, of any kind of drug, my daughter has endured an arsenal of them, and I can honestly say that nearly all the twenty or so that she's been on in seventeen years have been of no use to her whatsoever. In fact, they've probably done more harm than good. We are not an exception to this rule; 30% of people with epilepsy do not have control with multiple drug trials. Yes, 30%. I've grown extremely, if not irrationally, opposed to the seemingly careless way drugs are prescribed to children with refractory epilepsy (epilepsy is considered refractory when you've had a trial of at least two drugs and seizures are not controlled) -- I hear of young children on three and sometimes four combinations of AEDs all the time, still, in 2012 --  and I'm starting to get really creeped out by the numbers of "normal" kids being prescribed psychotropic ones as well.

I remember one neurologist years ago telling me that taking anti-epileptics was like peeling back the scalp and tissue underneath and pouring medicine over the entire brain -- a neuro-bath, I believe he described it back in the ancient 1990s. That meant the entire brain was affected by the drugs, and I do remember looking at the insert (that lovely piece of paper written in infinitesimal writing listing side effects ranging from irritability and bruising to constant laughter and death) and feeling like I was drowning in terror. I have never gotten used to giving her this shit. Never. I suppose I would have should her seizures ever have been controlled. I might have even been grateful. But even now, the drugs that Sophie takes are so new no one really knows what the hell they're doing to her, beyond the dizziness, headache, stomach cramping and tiny bit of seizure control. Years ago, when I first began exploring alternative treatments for Sophie, I asked her neurologist at the time whether it was all right to give her Chinese herbal teas that I'd gotten from a very trusted Chinese doctor. I don't see why not, the neurologist said in her clipped British accent, They couldn't be any worse for her than the stuff we've been cramming down her throat for the last decade. Poor little chip.


Evidently, more than 100,000 American soldiers are currently on psychotropic drugs. Yes, that's right. More than 100,000 of them, for issues like attention, depression, psychosis, etc. I suppose the justification is the constant stress and terror many of them have endured during more than a decade of war in Iraq and Afghanistan. We're asked, all the time, to honor our troops, to admire them for their bravery, their sacrifices in ensuring our freedoms. It makes me sick that the powers that be are loading them up with drugs so that they can do their job. And some of these soldiers have had alarming behavioral side effects -- outbursts of extreme aggression, psychosis, suicide. Have we replaced the shell shock of old in an attempt to "help?"

The image of the brain, bathed in chemicals, comes to mind.

I hope some of the brightest and best minds are trying to figure this out -- outside of commerce. My biased gut that feels like I'm poisoning my daughter every time I give her doses of Vimpat and Onfi tells me that something is just not right about any of it.

Articles referenced: Growing Up Drugged by Caitlin Bell Barnett, Salon
                               A Fog of Drugs and War by Kim Murphy, Los Angeles Times

This has nothing to do with Christmas

so it's a break in that sense. And it's been quite some time since I posted an I Smell Bullshit rant. Lots of sarcasm, here, and bitter, coping irritation.

Yesterday, I took Sophie to The Neurologist to discuss The State of Sophie, Inc. We went over various medication options over tea and cookies (only one medication left to try) and Sophie demonstrated one of her larger seizures, spontaneously, for The Neurologist's edification. We left with a prescription for locosamide or Vimpat, the prettier name, wished the good doctor Happy Holidays and went on our way.

Today, I took the prescription over to The Pharmacy and several hours later received a call from The Pharmacist.

Hello! We spoke with your insurance company regarding the Vimpat, and that drug is not covered on your plan. However, they suggested you replace it with Lamictal, which they will cover.


With my mouth hanging open (Lamictal? Now the insurance company is replacing anti-epileptic drug suggestions from my doctor?), I told The Pharmacist that no, we can't just take Lamictal, a drug that Sophie was on over five years ago for about seven years and that I guess I would call the insurance company and see what was up. The Pharmacist told me that he would order the drug anyway, that it cost $367 for the three week supply and that he hoped we could straighten it all out.

Here's the Christmas part of this post:

Ho!!! Ho!!! Ho!!!

I made the call to The Insurance Company (Anthem Blue Cross) and spoke briefly to an enthusiastic clerk who advised me to have The Neurologist call The Insurance Company for an authorization for medical necessity for the Pharmacist for Vimpat for Sophie. Then he wished me Happy Holidays and is there anything else I can help you with?

Ho!!! Ho!!! Ho!!!