This is a follow-up to my blog called The first EEG. Read on if you want to know what life is like when your child is first diagnosed with epilepsy. In my previous post I described the first short-term EEG that my son had, including a description of what happens during the test, the diagnosis of Benign Rolandic Epilepsy (BRE), and the prescription for Tegetrol.
Yes, we got a diagnosis. I also found out that I really didn’t know a thing about epilepsy. I didn’t realize there were so many different kinds. There was so much confusing terminology describing it. Plus over the years the terminology has changed. It was pretty overwhelming.
I decided the first thing I needed to do was to educate myself. The internet was pretty prevalent, but not as it is today. Even so, the first thing I did was to go to Amazon and I bought 7 or 8 books, clinical technical books, about epilepsy. Over the first year after my son’s diagnosis I spent over $6,000 on books. That sounds like a lot of money, but these books could be as much as $500 a book. Luckily I had set aside some money and could afford them. I didn’t care how technical they were, I knew I needed to do everything I could to understand what was happening to my son.
I learned a lot about BRE. The following information is a description from the Epilepsy Foundation:
Benign Rolandic epilepsy (BRE) accounts for more than one-third of all cases of epilepsy that begin in middle childhood, accounting for 16 percent of those beginning before age 15. There is a family history in 18 percent of cases and the condition is probably genetically determined.
Rolandic epilepsy is the most common type of benign partial epilepsy. Seizures start as simple partial, usually beginning in the face. There may be drooling and temporary inability to speak, although consciousness is preserved. The seizures then generalize to tonic-clonic convulsions.
Most of the seizures are nocturnal and occur during sleep. Neurological and other functioning is usually normal, while the EEG shows a dramatic focal spike most often in the centrotemporal regions of the brain. Most children are seizure free five years after onset; by age 14, 95 percent will have undergone permanent remission.
Some of this description matched the most recent events that my son was experiencing. The seizures were facial oriented and he was having these eye blinking episodes that came in clusters. It really wasn’t an eye blink but more of a tug at the side of the eye along with a blink and eventually a jerk of the head. He had been having these episodes every day since the first seizure, but they weren’t happening at night. Instead they started around twenty minutes after waking up. I could almost time it. It happened every day. Many times a day.
It also did not describe my son’s very first seizure, which both myself and the neurologist thought was a generalized seizure, a tonic clonic seizure (previously called a grand mal seizure). Tonic clonic describes two stages of the seizure. First there is a stiffening, rigid aspect and a loss of consciousness which represents the tonic stage, and then followed by shaking cases by the flexing and relaxing of the muscles, which is the clonic stage.
As my son continued to have theses seizures that happened every day and several times a day, I finally got smart and started video taping the events. This became pretty easy because he had the seizures every morning. So I just kept my video camera on a tripod, positioned at his seat on the couch where he watched cartoons. This is probably the most important tip I can give anyone when they are diagnosing seizures and don’t seem to be getting the right answers. Video taping. Over and over again. Keep video taping. At first this was hard, because I would panic when the seizures started. As time went by I panicked less, and eventually did not panic at all. Every once in a while the seizures would be different and more severe which brought out the panic once again.
The video taping became very useful. The neurologists studied them. They shared them with their colleagues. At one point our neurologist took my son’s seizure videos to a conference of neurologists that specialized in movement disorders. In fact we sent the video to specialists all over the country. And eventually, I used them to teach my son’s school how to recognize the seizures and what to do when they occurred.
As I studied about epilepsy I found out that Benign Rolandic Epilepsy is a simple partial seizure and named after the rolandic area of the brain, which controls movement in the affected part of the face. This area is also called the centrotemporal area. Another name for BRE is sylvian seizures, which is named after the location of the discharges near the Sylvian fissure of the brain. BRE is characterized by:
- nocturnal generalized seizures of focal onset (in one general area of the brain)
- diurnal (daily) partial seizures arising from the lower rolandic area
- an EEG pattern consisting of a midtemporal-central spike focus
The medical literature said the condition is considered benign because most children with the condition outgrow the seizures. But, for the period of time while the disorder is active, some children will have learning difficulties and behavioral problems. The seizures can usually be controlled by any of the common seizure medicines. Neurontin (gabapentin),Trileptal (oxcarbazepine), Tegretol or Carbatrol (carbamazepine).
Confused yet? Well, I was. To be honest, as I continued to learn about Benign Rolandic Epilepsy, the more I doubted the diagnosis. What next? I had no idea that BRE was just the beginning of it all.
To be continued . . .