Thursday, June 18, 2009

Epilepsy 101: Types of Seizures

As we continue our journey down Epilepsy Highway, let's look at the second video in the series that originates from the Epilepsy Therapy Project, a non-profit organization. This episode covers general types of seizures, to give you a better understanding of them. A broad stroke, if you will.


This is tough, because not only are their tons of types, but there are a bunch of old names that people still use. Remember the term Grand Mal Seizure? I do, from when I was growing up. This was a full blown convulsive seizure, the kind that people used to think you had to put something in their mouth (WRONG!) to keep them from swallowing their tongue. Well, they don't call it that anymore. Now they call it a Tonic-Clonic Seizure.

I dunno, Grand Mal sounds more sinister to me. Tonic-Clonic sounds like a beverage. Anything to soften the blow I guess.

And of course, there is the fact that any of these seizures can all have varying causes. I always feel the need to point that out. Two people can have the exact same kind of seizure but for two very different reasons.

Has your head exploded yet? We've only scratched the SURFACE of this very basic overview. Hell, even the experts don't know, that is why it is such a hard disorder to treat.

Anyway, Episode 2:



Hell, let's just keep going, this is for my education and you are just along for the ride, my friend. Let's get a bit more specific, with Episode 3: Understanding Partial Seizures. Don't let that terminology here fool you either, dear reader.

Someone once said to me..."Well, Bennett is only having SIMPLE partial seizures, so you're probably OK." Well, yes, according to classification his seizure type is mostly a Simple Partial Seizure, his main type anyway, but it is not Diet Epilepsy with a third less Fucked-Up-Edness than the regular Epilepsy. It's just a different kind. (I edited this because of one of the comments...Bennett has Simple Partial mostly with the occasional Complex Partial.)

Oh, and if anyone looks at my son's spasms and expects to see a Tonic-Clonic Max Fenig type of shake-and-bake, then says 'That's it?', a severe bitch-slapping will be following very soon thereafter.



But it's like the word 'Infantile Spasms', I've said it once and probably will a million times, that is the WORST thing in the world to call Bennett's condition. West Syndrome at LEAST sounds kind of threatening. Syndrome is a kicker for a lot of folks...but Infantile Spasms? Not really fair to the condition, or the kids.

It's like you can say Bennett, now you better stop acting infantile and having those spasms now, ya hear? I'm gonna have to spank that seizing bottom of yours mister! Infantile Spasms, to me, is really insulting to the kids who have it. Needs a better description. It's like I was telling one of my IS Sisters a few days ago, it's all about perception.


Remember Jaws? When the pussified asshat Mayor Vaughn was trying to weasle out of closing the beaches and trying to convince Chief Brody not to post signs about the shark attack and so forth and so on? Wanted him to be discreet? His exact words were:

Martin, it's all psychological. You yell 'Barracuda!, everybody says, 'Huh? What?' You yell 'Shark!...and we've got a panic on our hands on the Fourth of July.


Anyway, that pic isn't from the scene where he said that, but I always liked the billboard sequence. When I go off on a tangent like that I should start wrapping up, but my point is that we need a name that has the same gut-wrenching, heart-stopping reaction that Shark has, or Cancer, or Leukemia, or Alzheimer's or a lot of other things.

This probably will go live Thursday morning, and we have a doctor's appointment that morning with the local Epileptologist, so I should have a new Bennett update by Thursday night or I should think Friday. If not, there is always the weekend.


9 comments:

  1. Gonna be a glorious day in IS-land, I think. Today we go back to the neurologist.

    Yes, we were there Tuesday and spoke with him. When asked why we were coming in today he said "Oh, yes, do come in. We have things to discuss."

    Yeah.

    -MD

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  2. The name is definitely deceiving. So deceiving that I remember when we were handed the diagnosis, I breathed a sigh of relief...thinking thank God it's not seizures!! Man, did I have a lot to learn.

    Our epi still uses the old system. He told me once that Austin would be better off having grand mals. Bedside manner is not his forte.

    By the way, I didn't know Bennett mostly has complex partials.

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  3. Very hard to articulate to others,when speaking of the subtle outward movements of IS,that looks are ABSOLUTELY deceiving.I would often hear"Well ,I hardly saw anything."To that I would say,"Oh really,crawl inside her tiny head and SEE the nasty "hardly saw anything" effects."Zoey transitioned to lovely Tonic-Clonic before we hit control.Hated those as well.As not to make anyone feeling more crappy then they already do ,watching daily their children endure this "disorder",I would like to repeat something Dr.Shields said to me last summer:While at a conference a fellow Neurologist from France came up to him and said she had great difficulty,when talking to her patients parents,calling IS a "Catastrophic form of Epilepsy.A term Dr.Shields said he coined years a go.So he said he would think about what she said ,and get back to her.He returned a short time later and said,"Nope ..best word to use for it:Catastrophic.'Hard to hear,yes but true.I often say and wholeheartedly believe, that,for Zoey, those "hardly saw anything"things,are responsible for the extent of cognitive dulling we see in her today.An added blow, coupled with Down syndrome.So wish you could take a detour off this highway.Really do.

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  4. Mike:
    Yeah, we just got back. Doesn't it feel like sometimes you just go to go, that nothing really happens there? That's how I feel sometimes. I guess it is that way, until it just isn't and something real happens. Hope your appt. goes well, though. I can always hope right?

    Holli:
    Did I say mostly? I probably screwed up. He mostly has simple partials but he has some complex partials.

    At least according to my understanding of the definitions, Bennett has two types of seizures, simple partial (the flexing of the arms, nodding of the head...the so-called typical 'infantile spasm) and complex partial. He is currently exhibiting three varieties of simple partial. The full head/arms/leg spasm, a second type which is head nodding only and a third that has a type of 'facial slack'. He will be smiling, have an expression, face will go slack for a second and his chin will 'jump' or quiver. These all happen in clusters.

    Then there is the complex partial that he has, where he will just be GONE...whooosh, you snap your fingers, he is NOT home. That has lasted for as long as, I dunno, 20 seconds. But I'll tell you this, it felt like a fucking ETERNITY. These do not happen often, but they do occur.

    Yeah, that bedside manner doesn't sound very good.

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  5. Heather:
    You must have been writing as I was, missed your comment. Yeah, Catastrophic is a good word as a description. It is super appropriate.

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  6. Catastrophic or 'malignant' form of epilepsy is what I use too to explain what she had and why I am worried about her development,behavior etc and that she is not just going to 'outgrow it'.
    Anita

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  7. I run into the "well, it's JUST a staring spell" mentality a lot when I work with special needs kids at school.

    With my own son, who has Fragile X Syndrome, people like to say, "But he's so cute!" or "Well, you never know these days." Never know about what? My son's DNA?

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  8. Anita:
    Both great word choices, and both are appropriate.

    The Other Lion:
    Yeah, the cute thing ALWAYS stings.

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  9. I have always wondered WHY they have to call your kids' disorder "infantile spasms"...I guess because they usually begin during infancy? But, come on....Taat name is WAY too soft....I like the use of "catastrophic" with it...

    I use the good ole "grand mals" when talking about COlby's big ones...You are WAY too funny talking about the word "tonic-clonic"! (And it is TURE...The ARE better off with those types....SO much easier to control with meds!)

    As for the others, I just say "drops"...But now, they are mostly "collapses"...

    Oh well...

    Whatever...

    Cyndi

    And then,

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