It's midnight. Officially, today is the day we've been anxiously dreading for weeks. Or is it hopefully anticipating for weeks? I forget. A new doctor. The first new doctor since Chris was diagnosed 8 years ago. Eight years. That's not very long, yet sometimes it seems like he has been having seizures his whole life. But no, for the first 12 years he was the bright-eyed, agile, active son we always knew he would be. And then something changed in his brain. They began slowly and mildly at first, and gained strength and impact as Chris grew. The drugs are the worst part, and sometimes I argue with myself that it might even be better to have seizures now and then rather than deal with the debilitating side effects. But what do I know? I'm not in his brain. I only know what I read through my research, and the one thing that is common to all stories is that every single person is different. Different in how the seizures occur, different in how the drugs react in their system, just different. Always different.
It's not like he's incapacitated or anything. He is bright, friendly, has a bazillion friends, and works at a local supermarket. He played football, baseball, and was on the track team in high school. All without anyone knowing his secret. That ugly word secret: I have epilepsy.
Seizures are described as "an electrical storm in the brain" and like any storm in nature, there is some collateral damage. The eyes that once were endlessly bright are now clouded over much of the time. The fine motor skills that showed such promise in a 5th grader's neat printing now produce handwriting that is mistaken for a six year old's. Days are missed from school or work due to the side effects of anti-seizure medication. Chris laments that every time he has a significant seizure episode, he feels like part of his brain has died and he feels like he's getting stupid. This is not good news, for through it all my son has fought to get grades good enough to graduate from high school and attend a prominent university. But lately, his struggle is becoming overwhelming. Energy he should be expending on other life activities such as school and work, is spent just recovering and being uncomfortable. He is exhausted all the time, and sleeps much of the day. Last week he woke up one morning and announced he was quite sure he'd had two or three intense seizures in the night. By 4:00 p.m. he still couldn't get out of bed and called in sick to work.
This is why we are seeing a new doctor. The Epilepsy and Brain Mapping Program says their goal is to provide treatment with little or no side effects. When surgery is deemed necessary, they have an 83% success rate, something I've never heard a doctor say before. We are trying our best not to pin all our hopes on this new possibility, but it is difficult. I am afraid they will say surgery is a very good option to pursue. I am afraid they will say it is not. I am afraid they will say there is nothing that can be done. Afraid, maybe. A bit unnerved, yes. It comes and it goes. But through it all, I will trust God for the outcome and that He holds every detail of my son's life in His hands.
It just may take me a little time to learn how to exhale.
Tuesday, June 21, 2011
Friday, June 17, 2011
My son doesn't have Epilepsy, he has a Seizure Disorder
Epilepsy. Such an ugly word. I'm a bit ashamed to admit I haven't looked up the origins of the word, which is odd for me since I am somewhat a collector of words. And, I'll admit I haven't researched much into the generalities of the affliction. I don't yet know all the different types of seizures, or exactly what is being done in terms of research. But I have a son. An amazing, handsome, loving, compassionate, big and tall young man of a son who was diagnosed with Partial Motor Seizures when he was 12. Two years later he was labeled with Learning Disabilities and ADHD. The world hasn't been the same since.
Because his seizures came in the form of a twitching around the eye, it took us a full year and two neurologists to get a diagnosis. Even with an EEG, the first doctor said he was having muscle spasms and wanted to put him on muscle relaxors as treatment. Um.... that would be a NO. You are not going to put my athletic, active, Little League ball player on any drugs that will turn him into a noodle. Months went by, and the "eye twitches" began to be more frequent, maybe 20 a day, and began to engage his arms and legs. Describing the feeling as "like having opposing magnets attached to my hands and feet," my popular son gradually began to withdraw and spend time only with his very closest friends who had witnessed the twitching and could help him hide it. Time for doctor #2, who did an EEG immediately, followed by an MRI and proclaimed he was shocked the first doctor had missed "that line right there" on the EEG which clearly indicated seizure activity on the brain. Partial Motor Seizures. Finally, a name.
And with a name came an obsession for mom: research. That night I spent hours at the computer. Google became my new best friend: Partial Motor Seizures. Jacksonian Epilepsy. Wait, what? There's that word. The ugly one. Epilepsy. I didn't know anyone with epilepsy, and my only exposure to someone having a seizure was in high school when a girl in my grade had a grand mal during a film in class. The whole school knew about it within minutes. I never heard whether this was an isolated incident or if she indeed was diagnosed with epilepsy. She was probably the nicest girl in the whole school, but the damage to her reputation was done. How could my son have epilepsy?
As it turns out, we don't know. The MRI was inconclusive, and aside from a playground concussion in kindergarten, there seemed to be no reason for this to be happening. I now know that most people with seizures never learn the cause. And yet, there's something in the human spirit that just needs to blame something in the universe for whatever ails us. As in, everything gives you cancer. But what gives you epilepsy?
Because his seizures came in the form of a twitching around the eye, it took us a full year and two neurologists to get a diagnosis. Even with an EEG, the first doctor said he was having muscle spasms and wanted to put him on muscle relaxors as treatment. Um.... that would be a NO. You are not going to put my athletic, active, Little League ball player on any drugs that will turn him into a noodle. Months went by, and the "eye twitches" began to be more frequent, maybe 20 a day, and began to engage his arms and legs. Describing the feeling as "like having opposing magnets attached to my hands and feet," my popular son gradually began to withdraw and spend time only with his very closest friends who had witnessed the twitching and could help him hide it. Time for doctor #2, who did an EEG immediately, followed by an MRI and proclaimed he was shocked the first doctor had missed "that line right there" on the EEG which clearly indicated seizure activity on the brain. Partial Motor Seizures. Finally, a name.
And with a name came an obsession for mom: research. That night I spent hours at the computer. Google became my new best friend: Partial Motor Seizures. Jacksonian Epilepsy. Wait, what? There's that word. The ugly one. Epilepsy. I didn't know anyone with epilepsy, and my only exposure to someone having a seizure was in high school when a girl in my grade had a grand mal during a film in class. The whole school knew about it within minutes. I never heard whether this was an isolated incident or if she indeed was diagnosed with epilepsy. She was probably the nicest girl in the whole school, but the damage to her reputation was done. How could my son have epilepsy?
As it turns out, we don't know. The MRI was inconclusive, and aside from a playground concussion in kindergarten, there seemed to be no reason for this to be happening. I now know that most people with seizures never learn the cause. And yet, there's something in the human spirit that just needs to blame something in the universe for whatever ails us. As in, everything gives you cancer. But what gives you epilepsy?
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