Mamas Don't Let Your Babies Grow Up to Watch Pokemon

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.  

Mean Teacher Pinata for Sale

The last week of school is upon us...yeeee haw!!!  This is great because I don't have to wake my darling child up too TOO early on many days.  I work from home three days a week and so she'll only have to get up against her inner clock on two of those days.  Sort of like a reverse normal week during the rest of the year.


I don't know if it's her or the meds, the epilepsy, the moon, the stars, the shoe size of a gorilla or what, but she talks very often in her sleep.  Not the mumbling kind where you can't figure it out either.  If she ever gets married someday, she better hope she says nothing incriminating because her hubby will hear it ALL.  I can hear it from a room away as if she's awake, reading a script. 


She had seen on I-Carly (that show that makes adults look like bumbling doofuses that can't flip a light switch without the aid of a child for direction) an episode where this kid Neville says "Aw, Chiz!"  She has taken to this phrase as if it's an obligation.  To me, it's the kid equivalent of "Aw, SHIT!"  So last night, as if needing to read an entire football stadium, I hear "I need some Chiz!" from her room.  Ok, we don't need that kind of statement in public, Ever.  It doesn't sound like there is any profitable outcome from that.  So I went in, checked on her and asked if she wanted to come sleep with me.  Somehow, those words always drill right into her psyche.  She was up and in here as if she were moving before I'd asked.


But it makes things easier for me in the morning.  I don't have to listen for anything strange from the other room.  I put one hand on her so that I can feel if anything is starting.  This morning she was having a mild start to a seizure.  But because I could feel it, I told her to get up right away.  For whatever reason, this helps her.  It pulls her out of it.  My guess is that the brain now has competitive stimulation ... now she's standing, now she's walking, now she's navigating through the hallway.  Many times I will have to lead her through the house, back and forth.  Today was ok enough for her to do this on her own. And thankfully, most of the time she listens and just gets up when I tell her to.


Today she told me that she can stop a seizure sometimes and that it's like staring contest.  You just try not to move.  


Just the other day it was announced that 68% of patients with Juvenile Myoclonic Epilepsy (JME) become seizure free!  We don't know for sure that this is what my Humanling has but her neurologist seems to think so.  But because she was seizure shy during the last EEG, I'm not sure we can verify it.


For now, she has a pretty normal existence.  Except in some cases like where sleepovers are concerned.   She asks constantly about sleeping over someone's house.  And it breaks my heart because I can't put that on another parent or child.  As much as I want her to have a normal childhood, sleepovers are sort of out of the question.  She's tried her negotiation skills with me, since she is a Capricorn, after all.  "If I don't have a seizure for two months, can I sleep over so and so's house?"  
"Three months"
"Ok, Four months!" and there she goes upping the ante on herself, reminding me of the Bugs Bunny/Daffy Duck standoffs.  


An understanding teacher is key though throughout the school year.  I feel that hers has not been very supportive.  She's a first year Special Ed teacher and says really inappropriate things that make me want to stuff jalapenos in her mouth.  Last week she mentioned to Humanling, "How did you even make it to the 7th grade?" 


I've had talks with the school psychologist previously and we couldn't move her to any other classroom.  Next year I hope for much better for her.  As any parent would.


Time to for me to wind down now in the event that someone shouts out for more Chizz.