We’ve come a long way baby! Years ago, epilepsy was a death sentence. They used to take epileptics to the city gates and stone them to death. We’ve grown from that to denial of rights. 50 years ago, epileptics were looked upon with fear and trepidation. They were denied jobs, houseing, and the right to drive. With good reason I suppose – at least on the driving aspect – if the seizures were not under control anyway. My uncles lived through a lot of unfair and prejudical behavior because of their seizures.
One was bi-polar on top of having epilepsy and commited suicide: throwing himself off the Peace Bridge in Buffalo when he was 36. The other died at 17 by mixing whiskey with his phenolbarbetol. Not having my uncles to learn from or to talk to is hard.
Epilepsy is a dirty little secret that no one in my family talks about. Until now. I refuse to label it dirty, and I refuse to keep it a secret. My son has seizures and I wanted to know why. I also refuse to allow this bump in the road to limit him. Laws are changing. People with certain types of epilepsy are allowed to drive, provided of course that their seizures are under control. With the advances made in medicine, controlled epilepsy is probable and achievable.
Dillon has ADNFLE – or Autosomal dominant nocturnal frontal lobe epilepsy, a very rare genetic disorder that is only now being treated properly. In the past, ADNFL patients were treated as psychotic disorders. These types of seizures can range from mild to violent in nature and occur while sleeping or just before awakening. They were believed to be night terrors or part of a larger psychiatric disorder.
ADNFLE patients do not typically test well, which is probably why we had such a hard time with finding the right medications and a proper diagnosis. The EEG’s and MRI’s tend to come back normal. The only way to capture a truly abnormal EEG is to undergo a sleep study while wired for sound and hope he has a seizure during that time. It took two studies to finally capture his seizures on tape. Seizure activity can be dormant for months at a time, and rarely if ever during the day.
Dillon’s diagnosis went from it is epilepsy to we have no clue, for years. The spans of no activity and the palsy like side effects in the morning threw our doctor off. It wasn’t until we went to the Children’s Hospital in Fort Worth last summer, that we knew beyond a shadow of a doubt that it was epilepsy and what kind. I’ve also found out there is a name for that muscle weakness he some times experiences. It is called Todd’s Palsy.
These are things I did not know before this year. But they are things I know now and I’m happy for that.
Today is a very special day in the O’Hara household. Dillon has reached his six month mark of being seizure free for the first time in over six years.
What that means is Dillon gets to learn how to drive and he could not be happier.