Wednesday, November 14, 2012

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?


21 comments:

  1. I am often amazed at how we are able to create drugs that have so many unintended consequences without actually effectively targeting the most important thing we want them to.

    That aside, I love those mornings when I can lie semi-awake in the dark and let thoughts float through my mind without attaching significance to them. It is rare, but delicious.

    ReplyDelete
  2. Elizabeth I have not commented before, but follow your blog faithfully. I think you are a gifted writer and I look forward to your posts about the way you see you the world. I wanted to comment finally because I also have a son with learning difficulties, similar (I think) to Oliver's. My son is now in grade 12, taking academic courses, and I will say that getting him through school has been one of the most difficult, heartwrenching, tedious endeavors of my parenting career. He is a gifted athlete and through physical pursuits has maintained some sense of self esteem. When he has felt 'stupid' (which he has said frequently) he has at least had an outlet in hockey where he competes at a high level. Last year we finally bit the bullet and enrolled him in a very expensive private school for academic minded kids with learning disabilities. Financially, it is a major struggle. It isn't located any where near where we live and the drive is inconvenient.We should have done it years ago. I say this so that you can feel some justification in looking into the school you mentioned. It may just be the answer. My son could finally see that there were other kids like him, who weren't 'stupid' but needed to be taught differently. It was life changing. Good luck.
    Kris M.

    ReplyDelete
  3. Besides echoing the idea that it's key for kids to realize there are others like them (hence my younger 2E boy trying to start a kid-led support group!), here's pure (kinda off-color) comedy that your drug re-naming made me think of:

    http://www.geeksaresexy.net/2012/11/13/10-chemical-compounds-with-immature-jokes-for-names/

    ReplyDelete
  4. Wishing you that moment when you can pull the covers up and drift off peacefully!

    ReplyDelete
  5. That DOES seem like a rather peculiar choice of names.

    The idea of having to get into the school of one's choice is so foreign to me, having grown up in a town where there was one school and no choice! But I know the world is different about that sort of thing now, especially in a big city.

    ReplyDelete
  6. I don't think they know any of the "mechanisms of action". Not even for Dilantin yet.

    I've been reading about Perampanel for a while. I was supposed to participate in the drug trial, but it was too much of a hassle to get back and forth to Seattle as often as they needed.

    Have you looked into the GARD diet? It might be my next step- eliminate corn, gluten, soy and dairy (which, in turn, theoretically reduces the excitatory neurotransmitters glutamate and aspartate). I'm not super keen on the diet restriction idea, but Sophie could still eat french fries.

    For me personally, the idea of starting a new drug seems like another barter with beelzebub, but i'm within a year of landing in the ICU for a week because of difficulties getting vimpat in our local pharmacies. (I didn't quit cold turkey- i halved a morning dose, so i was still on 3/4ths the prescribed amount). One of the pharmacists told me it was something to do with the scheduling, which totally baffles me. I can't for the life of me see using vimpat recreationally. Hey! Let's get dizzy! Whee!

    Anyways, it's scary being so pharmaceutically-dependent. And yeah, who names these things, and what are they on?

    ReplyDelete
    Replies
    1. Have to be careful with the french fries though, unless they're homemade. Many french fries are coated in a thin layer of wheat, and most restaurants fry them in soybean oil. (My waitress hyperawareness of allergens is making me post this comment, I hope you don't think I'm terrible and pretentious).

      Delete
  7. Perhaps there is some drug out there--Viagra, or the like--with the unintended side effects of actually STOPPING SEIZURES?

    I admire you for staying out of the Where is My Child Going To School Bullshit. I was consumed by it until we moved to a town with just two elementary schools, and they're six to one, half-dozen to the other.

    Now I've got Tom Waits' "Get Behind the Mule" playing in my head.

    ReplyDelete
  8. I thought the same thing when I read this- why would they name the drug Fycoma? What a stupid name.
    Elizabeth, you have no idea how much your writing affects me. Even this far away, your words sooth and they inspire and they evoke emotions.
    I just want to very tenderly tell you that I don't think anyone on this earth could do what you do with such grace and with such humor and intelligence.

    ReplyDelete
  9. you and i must have been reading about the drug at the same time. came in my email from epilepsy therapy project. ugh. these fucking drugs. sigh. but still we look for that elusive silver bullet. how can we not? xo

    ReplyDelete
  10. I am sorry i deleted my comment before, i just suddenly felt that i didn't have the right to put my son's personal information out there like that, but i hope you read the comment before i deleted it, and i hope you investigate that school for oliver, because there's nothing to lose and maybe something to gain, if it turns out to be "his place." i truly believe if it is his place, then everything will fall into line to make it possible, including any necessary scholarships and such. believe the magic.

    and forget that fyuckingcoma drug. brownies, anyone?

    ReplyDelete
  11. yes, it would be a better name :)

    ReplyDelete
  12. yes. much better. but i so wish there was an answer for your beautiful girl.

    ReplyDelete
  13. Horrors. The side effects, the potential hazards - this makes me think of the consent forms for cancer treatment. Awful that there is nothing better than this on offer when it comes to treatments for our beloved family members. My heart goes out to you - and to Sophie.

    ReplyDelete
  14. your renamed drug sounds accurate ...
    oh, the things you have to deal with - above and beyond the usual things like "which school."

    my dad has dyslexia - he is a brilliant architect with several degrees - and he did that in old school schools

    architecture and similar fields are often led by people with dyslexia - they see things spatially

    ReplyDelete
  15. I'm not such a new reader, but a new commenter (I got here from Single Dad's blog). Anticonvulsants are scary and you've got them by the bucketload. After I read this post a few days ago I got my email from Epilepsy.com and they were talking about Fycompa (that's what they called it, anyway). I hope something works for Sophie, any luck with the brownie treatment?

    ReplyDelete
    Replies
    1. Thanks for correcting me and for inspiring my Saturday morning post! And thank you for reading and commenting!

      Delete
  16. Hi, Elizabeth. I've been reading for quite a while but not commented before. I was wondering if you have written about/have thoughts about Lyrica as a first/second line seizure treatment? My brother-in-law was enrolled in a Pfizer study for it's use as a first line treatment. He achieved seizure control but because he had a traumatic brain injury side effects are hard to establish. I have a really hard time knowing what side effects he is having from any kind of drug. (he a 50 year old man).

    Thank you for writing!

    ReplyDelete
    Replies
    1. Thank you for reading and leaving a comment -- I look forward to reading your own blog and was impressed by all that you're doing. I know of Lyrica but wasn't aware of its use other than as an add-on drug, often not effective for Sophie's particular type seizures. However, I appreciate your suggestion and am so glad to hear that it's helping your brother-in-law. I will definitely ask our doctor whether we should consider a trial of it.

      Delete
    2. Thank you for the compliment. My brother-in-law has simple and complex partial seizures that progress to generalized tonic clonic seizures. He was still having them while on tegretol. Unfortunately, we did not get to trial the Lyrica alone long enough because of bacterial meningitis and he had to go on both but there were no seizures of any kind during the trial. Having grown up with an epileptic mother (thankfully her seizures were not so frequent) who had to go through dozens of medications to find one that worked, I was very surprised at the success with the Lyrica. As you have mentioned, the double-edged sword of side effects with children is very worrisome though. Everyone I know who has used Lyrica either hates it or loves it. That isn't always a very good sign. We can't really say because of the TBI and b-i-l's lack of self-awareness.

      Delete

LinkWithin

Related Posts Plugin for WordPress, Blogger...