Meditation on New Language

I need a new language to express my feelings when I read headlines like this on respected medical websites:

Surgery in Drug-Resistant Children? It's Worth It!

I imagine a group of marketers and branders, the people a medical consortium has hired to spice up language, maybe make it more upbeat or appealing in the way that television ads for drugs show people running through fields of flowers even as a litany of side effects are listed. Perhaps these people -- the ones in the rooms brainstorming, the editors of medical websites -- not the ones running through fields or having seizures or being constipated -- are the same experts who come up with pharmaceutical drug names -- Lyrica to conjure soothing musical notes instead of addiction or constant diarrhea or Banzel with its suggestion of a premier fashion house for accessories instead of an antiepileptic whose side effects include increased seizures and psychotic behavior. How about Fycompa with that tiny little nod to coma, like Fie On That Seizure-Induced Coma! Its side effects include increasing belligerent behavior and aggression, even homicidal ideation.

There's the language assigned to pharmaceutical side effects: irritability for psychotic, behavioral disturbances for head-banging or clawing one's skin to blood, increased secretions for drooling cups of liquid, and insomnia for never sleeping again.

Drug-resistant children is a phrase that implicates the child, doesn't it? It smoothes out the anxiety and insanity inherent and provoked by an inefficient treatment. It's language that covers for hideous drugs that don't work for shit to control seizures in children.

The degradation of language.

No more plums in the icebox. This is just to say.

How casual it all sounds, in this, arguably, well-intended iteration.

Brian Surgery!

It’s worth it!

There shouldn't be exclamation marks after brain surgery but rather a new sign from a new language that amplifies cutting into the brain of your child and removing a part of it, her, him, they.

Actually, I don’t need a new language to describe my feelings. You can probably surmise them. No probably. You surmise them. Your gift for recognizing irony is intact, Reader, if you’ve been coming here a while.  

We need a new language to discuss these medical things.  

We need a new language to express things like brain surgery for children — a language that could encompass possibility, gravity, and hope but also fuckery and absurdity. 

Also, specificity.

The possibility, gravity, fuckery, absurdity and hope of brain surgery.

so much depends upon a red wheel

barrow glazed with rain water beside the

white chickens

William Carlos Williams

It's a big world and some thoughts about THCa

Once upon a time ....***





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

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

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

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

Therapeutic Uses

Analgesic – Relieves pain.

Anti-Emetic – Reduces vomiting and nausea.

Anti-Inflammatory – Reduces inflammation.

Anti-Insomnia – Aids with sleep.

Anti-Proliferative – Inhibits cancer cell growth.

Antispasmodic –  Suppresses muscle spasms.

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

Neuroprotective – Slows damage to the nervous system and brain.

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


Anyhoo.

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

















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

Fycompa, Blue Person Syndrome and Homicidal Ideation

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

Anyhoo.

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

Are you finished?

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

Are you still with me?

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

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

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

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

WARNING: SERIOUS PSYCHIATRIC AND BEHAVIORAL REACTIONS

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

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

But I digress.

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

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

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

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

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

The Chariot Has Arrived

After more than seven months of considerable wrangling, Sophie's Medically Necessary Wheelchair Chariot has arrived, and it is a piece of art! We are very excited to have this piece of equipment in the house and loathe, actually, to send it off to her school. On other fronts, we still don't have a wheelchair bus, so we would have to transport it back and forth which will be problematic given its size and sophistication. The alternative is to keep this one at home and bring in her more and very used stroller for school use. She has an adaptive chair at school as well, and given the few hours she spends there, I'm leaning more toward using the wheelchair at home. It even has a tray where we can put toys and her iPad and food. I'm very grateful that this came through -- kudos to Anna and all the hard-working folks at NuMotion who had to make so many phone calls, fill out so many forms and just generally advocate for us over nearly half a year.

On yet another front, there's not much movement, yet, going on in Sophie's intestines. She's resisted the Magnesium Citrate and only mildly responded to the Miralax. I did a little research last night on the Interwebs and had a eureka moment when I read about people using cannabis successfully for things like Crohn's disease and irritable bowel syndrome, when diarrhea is a problem. Then one of my blog friends privately emailed me with the question about cannabis and digestion, and I hypothesized that perhaps over time, the Charlotte's Web has slowed Sophie's already slow digestion. I spoke to the pediatrician about this, and she agreed and suggested that she hasn't been drinking nearly enough, either, to keep things moving, that after a period of time without drinking nearly enough, you almost lose the mechanism that tells you you're thirsty, and then you don't have the impulse to drink and POW -- the cycle begins. It all makes sense to me, now -- she just hasn't been drinking nearly as much, particularly during the last few months when it's been the hottest and driest. That, combined with the decreased mobility (her norm), low tone (her norm), the slowing side effect of cannabis (new) and seizure medications (her norm) got her into a bit of trouble. We've got a plan, now -- Miralax every day for a week or so before reconvening. The plan gives me some peace of mind, but even Oliver said with considerable rue that he regrets how irritated he felt with Sophie over the last few weeks as she moaned and groaned and obstinately resisted drinking and sitting. I hate to say it, but what can you do? If I lived in medieval times, I'd walk with the flagellants, I guess, do some sort of penance for my human weakness. Instead, I'll chalk it up to nineteen years of dealing with other shit (like the procurement of chariots) that has taxed my stamina and made me very, very weary.

Cannabis Oil Questions Answered, #2

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

Sophie in motion

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

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

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

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

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

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

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

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

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

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

Sophelia Bedelia, Bananarama Peelya, and a Charlotte's Web Side Effects Update

You hear a lot about the travails of being Sophie or of being her mother or siblings. You rarely hear about the plain old life of Sophie (other than seizures!), so I thought I would take a few photos of her this afternoon when she got off the bus from her summer school program, and I brought her back to her room. The Soph's universe is pretty contained, very padded and conducive to rest and relaxation with a sprinkling of things with which she loves to mess around. I told you the other day that she is free to roam around in her room, and other than occasionally banging her head on the only strip of wood not padded, she is safe to be alone. Lately, when she gets home in the early afternoon, she plays for a few minutes on the floor and then makes her way to the bed to take a nap. 

I realized today that she totally and completely positions herself into an appropriate sleeping position for really the first time in her life.  Another side effect of cannabis, I suppose! Increased purposeful activity! I took a few photos to share with you in sequence. I suppose a video would be more informational, but I started snapping these photos as they happened and think it's a pretty effective way of illustrating a small but huge change in how Sophie is living her life. They're a study of How Sophie Does It Now That She Doesn't Have Seizures All the Time.

(there's the strip of wood that she likes to bang her head on!)

Sophie's motor deficits include ineffective use of her arms and hands, but she has abs of steel, a core strength that probably rivals Madonna's. She maneuvers her way on to her bed in a way that belies motor planning disabilities, too.