Saturday, March 28, 2009

A day for Seizures

Today in Washington DC, there is the National Epilepsy Walk.

Living most of my life around Washington DC, I rarely pay attention to the happenings of the town. There are many walks, races, rallies, etc. However this walk caught my attention on the local news this week.

Today is about Epilepsy. Brayden has seizures. It is one of the many things that describes Brayden's medical history. Brayden has partial complex seizures. Seizures are a part of our daily life. Seizures effect so many people.

What exactly is a Epilepsy?

Epilepsy is a neurological condition that makes people susceptible to seizures. A seizure is a change in sensation, awareness, or behavior brought about by a brief electrical disturbance in the brain.
Seizures vary from a momentary disruption of the senses, to short periods of unconsciousness or staring spells, to convulsions. Some people have just one type of seizure. Others have more than one type.
Although they look different, all seizures are caused by the same thing: a sudden change in how the cells of the brain send electrical signals to each other.

I have asked around what seizures may feel like, since Brayden cannot tell me. Mostly I hear that they do not hurt. From stories of others, they tell me that coming out of a seizure can be confusing, like you are lost for a moment and then you are trying to get your bearings again.

I do not know what a seizure feels like. I do know what it feels like to watch one.

It feels like time moves in slow motion.

I desperately want to shake him out of it. It can be a scary thing. Standing there waiting...waiting for him to come back to you.

We track Brayden's seizures. From the moment he came home with us, I documented everything about his seizures. We count how long the seizures are, when they happen, Brayden's temperament, sleep, sickness, weather, etc. Anything to find a pattern. Something to give us a clue about his seizures.

His seizures seem to be ever changing. He is growing and his seizures are changing. We videotape the seizures to document and present to the neurologist. We want the doctor to understand exactly what we are seeing at home.

Brayden's seizures are somewhat controlled by medication. Brayden is currently on Keppra and Topamax. At this point, it has been the least amount of daily seizures that we have seen in a long time.

Seizures are a part of our life. The Epilepsy Foundation has a tag line, "not another moment lost to seizures." I could not agree more.

I got a phone call from a friend this week. Her children have a medical condition that is degenerative. The doctors told her that her daughter could start having seizures soon. Her phone call to me was asking about some odd movement and a brief moment that her daughter had in the middle of the night. I was saddened to share with her that it sounded like a seizure. It sounded like something I would say to describe one of Brayden's. She had talked with the doctor in the middle of the night and that is what the doctor said. Her daughter had a seizure.

Epilepsy does not only effect people with severe medical issues. Epilepsy effects many people, almost 3,000,000 Americans.

Oh and despite what happens in the movies, people cannot swallow their tongues while having a is impossible.

1 comment:

Shannon said...

Thanks for your knowledge and support on Monday. We have been seizure free since that first episode. I am sure I will be relying on your expertise the next time as well.