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.

You Cannot Fold a Flood

So, um, the hives came back.

My instincts are evidently still pretty sound. That big 'ole bolus of Vimpat was the wrong approach. The Sweet Doctor Whose Name Rhymes with Kevorkian confirmed them. He got on the phone with Doogie and our regular neuro and pulled the Vimpat. When I pulled back Sophie's hospital gown and saw the giant hives covering her, I felt terror (not at the hives but at the feeling they don't know what they're doing), a rush of anger (not at the doctors but at The SITUATION) and then just that same preternatural calm that I imagine has everything to do with Hospital Time and the weird stasis that comes along with sitting next to your child in a hospital bed for hours and hours. Then Sophie's father came in to spend the night with her and I drove the streets of the shitty back to my bed and fell into a deep sleep and dreams of boats and waves and whales. Honestly, I did.

So, what's the plan? The plan is to increase Onfi, the benzo, and work with the CBD. Someone asked me yesterday why I would continue to use the CBD when "it wasn't working." I'm not sure why Sophie fell out of the pretty decent seizure control she had for nearly three years. Maybe it was a virus, maybe it was the switch from brand to generic hormones, maybe it was a tilt in the earth's axis. As you can see (and what I've been writing and railing about for the past twenty years), the best doctors in the land don't know a lot either. Cannabis medicine is not a cure for seizures, but it's the only thing that has made a dramatic difference in her life. I really do think that we need to tinker with it and with the Onfi to get back to some kind of sanity. There are studies "out there" showing that the combination of Onfi and CBD helps to decrease seizures for some people. We're not fond of Onfi because it's basically a terrible drug that causes profound addiction and tolerance, but I think playing with it is in order.

I'll keep you posted. Thank you for buoying us the last few days. It means the world.







Here's a poem by the great Emily Dickinson that one of my friends sent me. Thank you, Anne.

You cannot put a Fire out—
A Thing that can ignite
Can go, itself, without a Fan—
Upon the slowest Night—

You cannot fold a Flood—
And put it in a Drawer—
Because the Winds would find it out—
And tell your Cedar Floor—

Emily Dickinson

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.

Feeling Stretched and Mature (and a CBD Update)

La Jolla, CA 1996

The work of the mature person is to carry grief in one hand and gratitude in the other and to be stretched large by them.

from The Geography of Sorrow: Francis Weller on Navigating Our Losses.*

I finally picked up Sophie's emergency medication from the drugstore today, almost five days after I requested the prescription. I was going to complain to The Earnest Pharmacist about the colossal communication breakdown but decided that I didn't have the energy for it. I'm generally a dog with a bone in these matters, but I also pick my fights with exquisite precision. The drugstore is within walking distance, and the convenience of it weighs more than perpetuating the conflict. I noticed -- with rue -- that my co-pay was only $15 and wondered if I was getting the $.99 Store version. I recalled a time nearly a decade ago when I'd had to purchase it on a weekend, couldn't get insurance approval (back in the days when I stockpiled rectal valium for crazy parties I threw), and paid $1400 for two doses. Apparently, Diastat is a relative bargain these days, so any of you Rectal Valium Party Lovers should stock up. I'll put it on the top shelf of the medicine cabinet in the bathroom where it'll hopefully sit for a few years before expiring.

Sophie appears to have come out the other side of this drastic cut in Vimpat. She's been smiling again, her palms are dry (they get clammy and cold when she has multiple seizures) and aside from some weakness in her right leg (attributed to seizures as well and perhaps Todd's Paresis), we might take another bit away this weekend.

I can say today, though, that since beginning CBD in December of 2013, she has about 90% fewer tonic seizures, 100% fewer myoclonic clusters, takes 65% less Onfi (the benzo) and nearly 75% less Vimpat.

My grief is in the blurring of the boundary between past and present, as is my gratitude. I am stretched large.


*Thanks to my friend Kari for posting this quote on Facebook and inspiring me.

The Anecdotal Present

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

Thank you.

Thank you.

Thank you.










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

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.

Drug Wars

I posted the above photo, innocuous enough, and told my Instagram followers that if such things turned them on, they should come over here and read this blog post or rant or whatever you might call the twenty-first year of wrangling with drug companies, pharmacies and insurance companies. I spent a bit of time today on the horse, trying to get Sophie's prescription of Vimpat refilled. I write a lot about the benzos -- Onfi, in particular -- but you might not realize that Sophie is also on Vimpat and has been since it was approved for use by the Almighty FDA in the fall of 2008. Yessiree Bob, as they say, and anywho. We slapped that drug on, along with the Onfi, numbers twenty one and twenty-two of drugs both approved and not-approved by The Almighty FDA and then spent the next eight years fighting for coverage by private insurance companies and Medi-Cal despite the grim fact that it doesn't really work. 

What does it mean when a drug given for seizure disorders doesn't really work?

It means the seizures don't stop.

Why, then, did you keep Sophie on that particular drug combination?

Because taking away drugs is a hideous process, and we had no other options. Oh, and because I used to listen to The Neurologist and do what he or she said with the exception of adding a third drug which I had earlier declared I would only do if Jesus Himself offered it to me. The Vimpat didn't appear to affect Sophie negatively, as far as we could tell (which isn't very far as she can't talk or express whether she's having any of the following:

Common side effects of Vimpat:

• Blurred Vision
• Dizzy
• Double Vision
• Feel Like Throwing Up
• Head Pain
• Throwing Up
• Uncoordinated

Infrequent side effects of Vimpat:

• Abnormal Manner of Walking
• Diarrhea
• Drowsiness
• Feeling Weak
• Involuntary Eye Movement
• Involuntary Quivering
• Itching
• Loss of Memory
• Low Energy
• Sensation of Spinning or Whirling
• Signs and Symptoms at Injection Site

• Rare side effects of Vimpat:

  • Atrial Fibrillation
  • Atrial Flutter
  • Atrioventricular Heart Block
  • Decreased Neutrophils a Type of White Blood Cell
  • Deficiency of Granulocytes a Type of White Blood Cell
  • Feeling Faint
  • Giant Hives*
  • Having Thoughts of Suicide
  • Increased Eosinophils in the Blood
  • Inflammation of the Middle Tissue Heart Muscle
  • Kidney Inflammation
  • Liver Inflammation caused by Body's Own Immune Response
  • Mental Disorder with Loss of Normal Personality & Reality
  • Multiple Organ Failure
  • Slow Heartbeat
  • Stevens-Johnson Syndrome
  • Suicidal
  • Toxic Epidermal Necrolysis
  • Abnormal Liver Function Tests
  • Aggressive Behavior
  • Anemia
  • Chronic Trouble Sleeping
  • Confused
  • Depression
  • Difficulty Speaking
  • Disturbance of Attention
  • Dry Mouth
  • Easily Angered or Annoyed
  • Feeling Restless
  • Fever
  • Hallucination
  • Heart Throbbing or Pounding
  • Hives**
  • Incomplete or Infrequent Bowel Movements
  • Indigestion
  • Mood Changes
  • Muscle Spasm
  • Numbness
  • Numbness and Tingling
  • Prolonged P-R Interval observed on EKG
  • Rash
  • Ringing in the Ear

Sophie has two different Vimpat prescriptions because she gets a smaller amount in the morning, so we try to keep the number of pills she has to swallow to a minimum AND avoid cutting pills into quarters or halves or other infinitesimal amounts. Today, when I went to pick up the refills of BOTH prescriptions, I was told by The Earnest Pharmacist (sigh, they're always so earnest) that Vimpat is a controlled substance, and they couldn't release it to me until Monday. I told The Earnest Pharmacist (bless his corporate heart) that I knew that because my daughter had been taking the drug for seven years (even though it doesn't fucking work) and then The Earnest Pharmacist said he would check to see whether if he over-rode that stipulation the insurance company would cover it, and I, of the tiny, little mother mind™ suggested that he give me three pills to tide me over to Monday and The Earnest Pharmacist said, Oh, no, I can't possibly do that and right before I morphed into Terms of Endearment Epilepsy Drug-Style Shirley MacLaine and banged on the counter, The Other Earnest Pharmacist looked up from her computer or little desk where she was counting out some other poor soul's drug and said, Oh, I can take care of that! Then I forked over my $120 co-payment that Medi-Cal is supposed to pick up but has mysteriously neglected to do so without the six thousandth prior approval.

Then I grabbed a bottle of cheap vodka from the liquor aisle and a bag of Cheetos and ran from the store to add to my stash of Vimpat that I am hoarding for thrills at home in the brown basket right next to the bottles of Onfi and the Lone Ranger cookie jar.







* The reason for this post has just occurred to me. Sophie has been getting hives off and on for a number of weeks. I have no idea why and am now wondering if it's due to the Vimpat? I had thought a drug rash unlikely when I first saw them, because drug rashes usually show up right after you begin taking the drug, and it has been over seven years, but --- well --- sigh. 
** See above.

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

Landing on Comets

Today I learned that a space craft has landed on a comet for the first time. That's a photo of the event. Meanwhile back on earth, we got a sort of explanation, possibly, for Sophie's "drop foot" or increasingly strange gait pattern. Yesterday was the Quarterly Trip to the Neurologist, and despite Sophie's recent digestion troubles, she was in fine form, alert, smiling, seizure-free and fairly animated. The Neurologist was delighted and suggested that the prolonged use of the particular anti-epileptics have probably, over time, caused the problems. She informed me that both Vimpat and Onfi are troublesome, and she really, really wants us to continue to wean the Onfi. This can only spell improved efficacy with the cannabis, as most reports indicate those off of benzos in particular see the best results. She was delighted as well that the cannabis was helping her so much, remarked on how good she looked and agreed that more testing -- an EEG -- wasn't necessary. We made a plan to begin another wean this week and will keep it at that level for a month before moving to the next. I have written out on a piece of paper four months worth of weans (1 teensy tinesy bit, hopefully, a month) which is a start but not complete. The Neurologist told the grim story of one of her patients who got into too much trouble at the end and continues to take a tiny bit. She suggested that this might be the case for Sophie, too, given how long she's been on the drug and how much she's taken. Lovely. Maybe I'll get a chance to ride a comet in celebration of The Removal of the Benzo. The Neurologist also threw some alarming fact about bone marrow and one of the drugs into the conversation which I filed away to mull over later. Lovelier. I told her about the weird stepping motion Sophie makes and how I'd wondered whether she had Parkinson's or Multiple Sclerosis, two of the diseases that I saw on the internets that correlated with drop foot. I asked her this question in my best casual, yet rueful and ironic way (because -- really -- I wouldn't be entirely surprised to learn of some new catastrophe and when your child is nonverbal, who the hell knows ever what's going on? That spacecraft that landed on the Comet is called Rosetta, which makes me think of those language programs which then makes me think of how we can't figure out what someone like Sophie is thinking or feeling and wouldn't that be wonderful if there could be a Rosetta for the nonverbal?

Anyhoo.

The Neurologist, after observing Sophie walk believes it to be just plain old weakness, exacerbated by her constant crossing legs and a possible injury around the knee. She wrote me a prescription for physical therapy, so next on the agenda is perhaps a fracas with the insurance company over whether this is absolutely medically necessary (can't she just use the wheelchair? I imagine the agent asking over the telephone). Before I do that, though, I'll take her to the private physical therapist for a little assessment that will cost me about three trillion dollars and get some advice from her on where to go In the Healthnet Network for regular physical therapy. Remember you conservative and anti-Affordable Care Act freaks and repealers: You don't want no government coming between you and your doctor!

Anyhoo.


All in all, it was a good visit to the place of CONQUEST (see my post about irony, written years ago) -- surely not as spectacular as a spacecraft landing on a comet, but who am I to think our little problemos have a speck of significance in this grand universe?