Things That Amuse Me, Part 567

from Monty Python and the Holy Grail

567.

very well-respected neurology periodicals like the current Epilepsia with articles like the following:

Controversies in Epilepsy
Dietary therapy is the best option for refractory nonsurgical epilepsy Elizabeth A. Felton and Mackenzie C. Cervenka Article first published online: 22 JUL 2015 | DOI: 10.1111/epi.13075 Abstract | Full Article (HTML) | Enhanced Article (HTML) | PDF(118K) Dietary therapy is not the best option for refractory nonsurgical epilepsy María Magdalena Vaccarezza and Walter Horacio Silva Article first published online: 22 JUL 2015 | DOI: 10.1111/epi.13074 Abstract | Full Article (HTML) | Enhanced Article (HTML) | PDF(127K)

How We Do It: Part XLIV

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

Stephen Elliot, via his Rumpus emails 

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

We're a weird bunch.

Humor is tragedy plus time.

Mark Twain

My friend Erika and I were talking on the phone last night, and I was sharing with her my recent visit to The Neurologist. Erika has a child with a seizure disorder as well, and even though her daughter is many years younger than my Sophie, Erika's sense of humor is sharp, achingly so, and she jumps right into the Roman gladiator pit with me.

As you might have surmised, Sophie's honeymoon from daily seizures is now officially over. The drug Vimpat has ceased working as well as it was, and now we're on the tiresome wheel of deciding what to do next. We don't really have any options that jump out at one, unless you think another ketogenic diet trial is worth it.  The second and last time we tried the keto diet was about a decade ago (the first time was in the early days -- the mid-90s, when not many people even knew about it), and while it helped Sophie a bit as far as seizure control, it also turned her into a caged tiger, ravenously, desperately hungry with impacted poop (I'm not mincing words). It traumatized me so deeply that I look on that time as being equal to the trauma of her diagnosis and the early days of high dose steroids. That the connection between mothers, children and food is a deeply primitive one is not lost on me, but acknowledging it does nothing to dull the pain of that time.

A second choice is a revisiting of the drug Vigabatrin (or Sabril, as it's also known)-- one of the "newer" approved drugs and one that we tried, also, back in the mid-90s when we ordered it from England. I've waxed philosophical about Vigabatrin in a chapter in my yet-unfinished book -- the chapter was then published on epilepsy.com's website.  The drug wasn't approved for many years in this country because of some very serious side effects involving the retinas of the eyes. It's now approved and used as a front line drug to control infantile spasms, the terrible epileptic syndrome that Sophie was diagnosed with -- a form of epilepsy that continues to stymie the best minds. In fact, very little progress has been made for babies and children with infantile spasms in the sixteen years that we've been part of that club. In order to go on the drug now, one is subjected to a strict protocol -- eye exam baselines and the signing and initialing of pages of caveats and warnings and information. This is what I did at The Neurologist appointment yesterday, and as I told Erika, I found it bizarre and not a little hilarious that I was able to casually check the little box and print my initials, EA, next  to sentences like: I understand that about 1 in 3 infants taking Sabril will have damage to their vision. I understand that if any vision loss occurs, it will not improve even if my infant stops taking Sabril. 

I loved Erika when she burst out laughing when I told her about initialing this sentence: I understand that there is no way to tell if my infant will develop vision loss.

Unless you get it, you're probably not laughing, but we were and I think if we were two women in vaudeville we might have been slapping our knees in hilarity, knocking each other over with the force of the absurdity.

What really set us to being utterly cracked was my description of our other "option" for control of seizures: the vagal nerve stimulator or VNS. You can google and read about it online, if you'd like to know more. It's been around for quite some time and really doesn't have a fabulous efficacy rate -- the rule of thirds, much like drugs (one third improve, one third stay the same, one third get worse or go off). In any case, here's a scan of the box that had the informational DVD and brochure. 

In describing the packaging, I wondered aloud to Erika about the work that went into that marketing and how hard a group worked on  just the right words, the right picture, how much to suggest, how to harness hope and propel people toward treatment. I wondered aloud to Erika whether the two women frolicking on the beach might be our daughters one day or maybe even the two of us, looking beyond. 

We just laughed and laughed and laughed.

Sanity and happiness are an impossible combination.

Mark Twain