Before I started this post, I merely pulled up a blank box, waiting for my words to crowd it nicely. Before I had a chance to do so, I was struck with the idea to take a walk with my girl to pick up a couple of things at the store. We spent about an hour out, stopping in the library to peruse, then stopping all along the way to browse through the local craft show downtown. Humanling even took a photo in what I would call closer to my style of photography and I thought to myself...awesome. If she can get away from linear perspective at this age, she'll be incredible by mine.
We had a brief chat on the way home regarding the School's Current Common Cold. I mentioned that perhaps she could just not touch her face at school or wash her hands before she eats. Suddenly she had this urge to shower as soon as we got home. I don't mind if she gets a cold here and there. She needs a few germs. However, I'd hate for her defenses to be down and seizures to take the offense because of it. Sneaky things. They pounce on any weakness.
We had a visit with her neuro the other week to go over the test results of her EEG. It has been determined that she has Juvenille Myclonic Epilepsy (JME), so pull up another chair to the table, it's not going anywhere. It was thought from the onset when she was around five years old that perhaps she may grow out of it. It looks like this is not going to be the assumed path, but I refuse to stop believing for now. Her meds (Lamictal) have been increased in increments for now. So far I don't see too many side effects of that, thankfully. Maybe more moodiness here and there but then again, what's a teenager without a side of moodiness?
In case you don't feel like hitting the link at the moment, straight off the website is a little info:
Juvenile myoclonic epilepsy (JME) is one of the most common epilepsy syndromes. It accounts for 7% of all cases of epilepsy. The seizures of JME may begin between late childhood and early adulthood, usually around the time of puberty. Fifteen percent of children with childhood absence epilepsy later develop JME. It also is more likely in people who have family members with generalized epilepsy. The intellectual ability of people with JME is the same as that of people in general.
Some people with JME experience seizures that are triggered by flickering light, such as strobe lights at dances, TV, video games, or light shining through trees or reflecting off ocean waves or snow. These are called photosensitive seizures. Occasionally, myoclonic seizures are also provoked by factors such as decision-making or calculations.
So, Great! 7%! Yes, it's good to be rare.
The strange part is that no one on either side of the family presents seizures or epilepsy. It is possible that her father did have some neurological issues but that information is like going through a game of Telephone. I don't think I'm going to hit the absolute truth on that, and if I did, would it change anything?
The part that really hits home is the photosensitive piece. Riding in a car with Humanling when the sun is out and flickering through the trees is like texting and driving. Although she may remember to wear her sunglasses and brim hat, sometimes she doesn't, and neither do I remember to remind her. She enjoys looking in the rear view mirror and singing to herself, watching her reflection on many drives. Murphy's law has it that whatever direction I am going in, it's the one where the sun is on her side and in her face. Therefore, I am constantly looking over at her to be sure that she is not making an offer of her face to the sun. Which she usually is. I don't know why this is, I know it isn't possible that she's just being a rebellious teenager. I think it is more like the charm of those damn Anne Rice vampires. The sun just has its Come Hither junk going on. If she gets "trapped" in the glare, she's pretty powerless over it. If I bark out a "HEY!" she may jolt out of it, mad at me for shouting. But with hands on the wheel, sometimes that's all I can do. This is due to the Photosensitive sector of her epilepsy. More on that Here.
It turns out that this Photosensitive seizure activity can happen to people in which no epilepsy has ever presented. Let's remember the Pokemon movie in Japan from 1997. Check out my awesome copy & paste skillz from Wikipedia on the subject:
The episode is infamous for using visual effects that caused seizures in a substantial number of Japanese viewers, an incident referred to as the "Pokémon Shock" (ポケモンショック Pokémon Shokku) by the Japanese press. Six hundred and eighty-five viewers were taken to hospitals; two people remained hospitalized for more than two weeks. Due to this, the episode has not been rebroadcast worldwide. After the shock, the Pokémonanime went into a four month hiatus, and it returned on TV Tokyo in April 1998. Since then, the episode has been parodied and referenced in cultural media, including episodes of South Park and The Simpsons.
Freaky huh? Imagine being in the theatre with THAT. Never being exposed to epilepsy before, I know in 1997 if I was in that theater I would have thought terrorists were gassing the place.
Due to my own experience with Humanling's photosensitivity, I now view driving with the sun filtering through the trees in such a reactionary way now that even when she isn't in the car, I am skittish about it.
So did the new diagnosis help? It certainly doesn't change what Is. But it does help to know what is in store, On Paper.
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