The scar tissue on his brain causes little electric charges in his brain that sometimes become seizures. Some months he has a cluster of seizures, though very short ones, never fun.
Sebastian had an EEG in March 2016 with his (then) new neurologist (who is amazing).
I learned that his seizures are local, not global, and they move all over the place.
Sometimes in his left side and sometimes on his right. This means that they don't interfere with his learning or his ability to interact with others/the world around him.
This made my heart happy. His medication helps keep the seizures regulated and so we do have periods of a 1-3 months where we don't see seizures. Sometimes he has them at night, which is super scary since we don't know until we get him in the morning and there is a large pool of drool/drool stain on his pillow.
We start to feel comfortable during the quiet period. But the seizures always jolt us because no matter how many we have seen, they get you every time.
It was dinner time and we were telling daddy about meeting a boy in the museum cafeteria today. We talked about how you both loved the bat cave and then we saw him coming out just after us later in the afternoon.
Your right arm went up in what I thought was excitement and then I noticed the twitching. I looked into your eyes and you could still see me but you couldn't respond.
As your arm twitched I fumbled to get my phone to time your seizure. Thankfully you didn't have any food in your mouth.
These new epilepsy apps allow me to video the seizures.
Your dad grabbed your hand and your little sister played in the background, oblivious to your seizure.
I was thankful for this. I stared at you through the lens of my camera and reached out my left hand to steady your twitches, but also feeling them so I'd know when your seizure had finished.
It felt awful and strange to watch you through a lens. To be videotaping your seizure like some home movie. I let go of your elbow in case I would mask what your body was doing.
It fell limp and your body let out a sigh at 48 seconds. I added another 10 seconds in the app since I'd started the video late and I wanted to make sure we had recorded the entire event accurately.
Emergency measures happen at 5 minutes. Ativan between your cheek and gums.
Then you turn into a zombie for a day or so.
Thankfully we haven't had one that long since your seizures officially started the summer of 2010. But we’ve had to use the Ativan to ward off seizures too, when you’e been sick and had days without sleep.
I don’t like to do that anymore after seeing you so spaced out for so long. I wasn’t surprised about this seizure, though I thought it would have come sooner, since you were recently ill with strep throat and had many sleepless nights.
I suppose we can guess when they are coming but only your body really knows.
We are 6.5 years in to this epilepsy thing. Your medications manage your seizures for the most part.
Your last ones being in November. Watching your seizures makes me feel completely helpless. There is nothing I can do. Monitoring the time to make sure we stay in the safe zone. I want to be able to do something and I'm afraid of the time I'm not there when you really need me to do something.
So I decided to find you a dog.
We knew you loved dogs after your first brief stay in hospital when you were just 2. You hadn't smiled in a week and you perked up only when the hospital therapy dog came in for a visit.
Fast forward to over 6 years later and you are eagerly awaiting your very own service dog, Ewok, to come live with us. Hopefully he will be able to let us know when you are having seizures too.
There are a lot of things I wish you could tell me.
What do seizures feel like for you? How does your medicine make you feel? Are you happy to be on your medicine even if it makes the world cloudy or your tummy hurt sometimes? How tired do you feel after a seizure? Is there something you wish I would do to help you feel better afterwards? Do you still feel tired the next day?
Some of these I can guess or even know and understand a little bit just by knowing you.
I talk to adults with seizures to gain some perspective. I hope that with the aide of your eye-gaze you’ll be able to help me understand more. I am super diligent in your time clock, making sure you get the sleep you need and trying to keep you as healthy as I can.
But we can’t live in a bubble and sometimes we like to stay up to watch the sunset in the summer time.
Soon I will sleep a little better because Ewok will watch over you while you sleep. Regardless of whether he will detect your seizures, he’ll be there to calm you and get us if you need help. Your seizures will always be a part of you.
We won’t allow them to keep you from enjoying your life, they just require us to make a few adjustments.