Seizures: Clark's Story
BY MIKE BUFFINGTON
MAINSTREET NEWSPAPERS, INC.
Clark Buffington age 7, 2002, before brain surgery
My journey into becoming a part-time pot grower to call attention to a much-needed change in state law is due to my son’s epilepsy. Clark had his first seizure 15 years ago when he was 6 years old. Most of the time, childhood seizures are controlled with medication and often children outgrow a seizure condition.
Not Clark. His seizures come from the left hemisphere of his brain, which didn’t form correctly. On an MRI, his left frontal lobe looks like Swiss cheese. (There isn’t a medical name for Clark’s condition.)
In an effort to stop his seizures, he has tried every medication available. He has had two brain surgeries (2002, 2007) to remove damaged brain tissue that doctors thought were the genesis of his seizures. Neither surgery was successful and the second one created a profound language deficit that took him months to overcome.
In addition to medications and surgery, he also has an implanted stimulator that cycles on and off every 30 seconds to send an electrical impulse into his brain. But that has not stopped his seizures either.
On top of that, he has tried various medical diets and we’ve consulted with doctors all over the country and from around the world. At one point, doctors considered a drastic proposal to remove the entire left hemisphere of Clark’s brain. Today, he is a patient at NYU medical center in New York and is seen by one of the world’s top epilepsy doctors.
Despite those efforts, Clark continues to have seizures on a weekly basis. Unfortunately, his seizures tend to become status, meaning they won’t stop on their own.
An uncontrolled seizure is often deadly. Fortunately, we have a drug that helps most of the time. Essentially, it is liquid Valium that is injected rectally and immediately absorbed into the blood system. Most of the time, 20 mg. of Valium stops his seizures before they become life-threatening.
But not always.
On a number of occasions, we’ve had to take him by ambulance to an emergency room to get stronger IV drugs. A few times, doctors have had to put him in ICU, intubated, and give him even more powerful drugs to stop an uncontrolled seizure.
Another consequence of his seizures is that sometimes Clark stops breathing. On a number of occasions, I’ve had to do CPR to keep him alive until the seizure abates and he is able to breath on his own.
Clark’s life has not been a total disaster, however. We treat him as normally as possible. He became an Eagle Scout — he loves to hike — and he is a talented artist. Today, he helps us make sports photos for the newspaper. And you don’t want to play trivial pursuit with Clark; he’ll devastate you with his quirky knowledge of obscure facts.
Still, he’s limited and not independent. He can’t drive. He had to drop out of high school due to his seizure frequency. And he often has to sleep three or four hours during the middle of the day due to the sedative effects of all his medications.
Today Clark is a 6 ft. 235 lb. 21-year-old adult who has to be monitored 24/7 in case he has a seizure. And when he does have a seizure, usually once or twice a week, it invades both his dignity and privacy to have to pull down his pants, sometimes in public, to administer the only drug available that will stop his seizures.
There are 17 medications available today for epilepsy and very few new ones being developed. So you can understand why I am interested in any medical compound that might help control Clark’s seizures. There is a lot of evidence that some compounds in the marijuana plant are effective in helping control seizures.
As a parent, I don’t care if such compounds come from a marijuana plant or a jalapeno pepper, our society should open the door to research and development to help people like Clark no matter what the source may be. And in the interim, it should be made available for experimental use.
Clark Buffington 2015, age 21