Melanie Seaman...In Her Own Words

Melanie Seaman is a stay-at-home mom from Long Island, N.Y. In addition to her 17-year-old son Bobby, who has epilepsy, she and her husband have two other children, Todd, 26, and Samantha, 24. The whole family enjoys playing tennis together.

My son, Bobby, will be turning 17 years old tomorrow. While his friends are all achieving what I would call their rite of passage, which every 17-year-old dreams about—getting their driver’s licenses—my son cannot, and my heart aches for him. Bobby had his first tonic-clonic seizure in December 2004, when he was in the 8thgrade. We bought him a video game system, for Hanukkah, and when my husband went to our basement to see how he was enjoying it, he started screaming for me to run down to the basement.

Bobby was having a tonic-clonic seizure. At that time, we had no knowledge about seizures and my first thought was that someone was brainwashing him through the video game headphones. When the paramedics arrived and explained to us that it was a seizure, we were stunned. After two more seizures in 2005, Bobby began the medication that we were so afraid to put him on because of the possible side effects, but there was no longer a choice. From that day on, I never went anywhere without my cell phone or far from home or school.

We visited the neurologist regularly and for three years after his last seizure, Bobby remained seizure free. It took a long time for me to let my guard down and allow Bobby to stay home alone or walk to a friend’s house by himself. In December 2006, he was given an ambulatory EEG* to determine if he could be weaned off of his medication. To our despair, the EEG still had too many abnormalities, so we had to wait another year. At the end of 2007, Bobby had another tonic-clonic seizure during math class. To say we were disappointed is an understatement. His medication was immediately increased. He had another EEG and, oddly enough, it was only slightly abnormal—a big improvement from the previous year. However, three weeks later, he had another tonic-clonic seizure at school. His medication was increased again.

Although five seizures in a three-year time period is not a lot in comparison to what some other people go through, it is five seizures too many for me. When your child has seizures intermittently, you live with constant uncertainty. The When, Where, Why and How questions are always in the back of my mind. When will he have a seizure again, and, more importantly, where will it occur? Why does it occur and how can it be prevented are the questions I hope researchers and scientists are working on.

As a parent of a 17-year-old, I have so many concerns. Bobby wants to get his driver’s license and I tell him I hope he will, but I really don’t. Anyway, I’m sure he can’t, at least for a while. We are looking at colleges now. He’s very bright and can go wherever he finds the right fit, but inside my head, I would like him to turn the corner. I don’t tell him that either. He keeps assuring me that he won’t have any more seizures, but I know he can’t know that. He loves taking the Long Island Rail Road into Manhattan and meeting up with his older brother to watch Knicks games, or going into Shea Stadium for a Mets game. I encourage him to take a friend, but I don’t tell him I’m afraid he might have a seizure on public transportation all alone. As a 17-year-old young man, he is certainly entitled to some independence. I try my best to give him that, but it is difficult. I wish he had some aura or feeling before a seizure so he could get himself to a safe place, but he senses nothing. Our hope at this stage in his life is that when he goes off to college in the fall of 2009, he will be seizure free and off his medication. Unfortunately, with epilepsy, nothing is certain.

I hope reading this helps other parents in similar situations realize that their fears are not unwarranted and they are not alone in their feelings. I think it is good to put up a brave front for your child so that they don’t live in fear and can go about their lives without remembering they have epilepsy every single day.

*An ambulatory EEG is a prolonged recording of patterns of electrical activity inthe brain. The procedure checks for abnormalities in the brain over a period when thepatient is both awake and asleep.