by Terri Kelly Barta
Over the weekend I was reminded by a friend that Monday, March 26 I was to wear purple for epilepsy awareness day. She mentioned that there is still a stigma for people with epilepsy in today’s society.
I have a hard time believing that more progress has not been made in recent years in the public’s acceptance of epilepsy as a disease process, not something to be afraid of.
Our family experienced a 4-year-old who was diagnosed with a seizure disorder in 1982. He collapsed on the bedroom floor on what was supposed to be his very first day of pre-school. I did not see the seizure as ‘Mr. Independent’ was dressing himself for school and I was in the kitchen. However, he complained of a stomachache and slid right off the bathroom stool so I knew something wasn’t right.
He was admitted to the hospital and we were told that his kidneys were putting out too much potassium. Later, after a pediatric neurologist examined him, they added the diagnosis of seizure disorder to the kidney problem.
The neurologist told us not to tell other parents he had a seizure disorder as soon no one would be allowed to play with our son. That really startled me. I was an Emergency Medical Technician at the time and knew that epilepsy is a case of disturbed brain activity which can cause changes in attention or behavior. The changes cause the brain to become excited. It is not a mental condition, it is kind of like an electrical short circuit only in the brain which controls body functions.
As we observed our son, he would stare off into space for less than half of a minute and I would pinch him and he would not react in any way for those 20-30 seconds. He was put on medication and the doctor said he had outgrown it at about age 6 1/2. Today he has a successful career as a web designer and computer programmer. After the initial shock wore off, the decision was made not to treat him any differently than we would our other three sons with the exception that he could not climb on monkey bars or anything high he might fall off, if he had a seizure. This was hard on him, but he adjusted.
We told our close friends, parents, the teachers, and others who would have charge of our son that he had epilepsy, but took medication and most likely would be just fine. He was fortunate. He was still invited over for play dates and even an occasional overnight stay. I told people what to do if he had a seizure. No one was squeamish about it. It was just part of the package.
Epilepsy is not anything to be afraid of. Kids have all sorts of diseases they can get. They can lead active lives with the rare exception of those who have uncontrolled seizures and many in an hour or a day. That is a true challenge. If your child wants to play with a child with a seizure disorder, educate them on what to do, and then let them play. It’s just that simple. If you have to educate yourself first, do so.