Splendid Mayhem: Logen had a seizure again

Welcome To Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Tuesday, August 12, 2008

Logen had a seizure again

I forgot to mention. Logen seizued at the dinner table last night. It was one of those 'freak' staring spells. He just dropped his head back, rolled back his eyes and went non-responsive. It only lasted about 30 seconds. I am waiting on the nurse from the CP Center to call me back. They said if he was still having seizures at his current dose, they'd most likely increase it. My poor little Logen. He's already fairly lethargic on it now. He goes from laughing hyena to mad to asleep in minutes.

Anybody know of any aggresive-ness associated with Zonegran? Logen seems to be mean, like hitting us or biting. Not sure if he's just more frustrated or the med is making him crazy. Any help would be great!!! :) Thanks

5 comments:

BarbaraAugust 12, 2008 at 2:46 PM
I don't have any information for you but just wanted to drop by and say hi. Don't worry about your blog - this is your life right now. You're having a rough time but things will get better - hopefully soon.

I'm sorry to hear about the seizures. I can only imagine how terrifying they must be. I hope the meds get sorted out and they can get better.

I'm sorry that I'm not much help. I'll be thinking of you!
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DawnAugust 12, 2008 at 9:03 PM
I'm sorry about the rough patch. The seizures, the aggressiveness. I hope they can find the right meds soon. I know you must be going crazy.
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AnonymousAugust 15, 2008 at 12:55 PM
My seizure meds made me feel like I was literally losing it-I was the same as Logen. I'd be totally bouncing off the walls, then bored, then super happy and giggly, then lethargic-all compacted into an hour. It also made me EXTREMELY beeatchy!!! I'm guessing that comes out as agression in Logen. I HATED those meds!!!
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ellen :)August 17, 2008 at 10:50 PM
Sam doesn't have any bad effects that we can tell, anyway, from his Zonegran, but then he can only cry to show us he's mad or angry, he can't physically act out with punching, etc. He's been on them so long, I think his body is used to them now.... sorry I don't have any more help than that...
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MelindaAugust 21, 2008 at 2:48 AM
Bri has been on Zonegran for about two years now, and we haven't noticed any adverse affects with it. Not that they can't happen...just, we haven't dealt with any...
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