Living with Seizures

In February, Luke had 4 seizures while recovering from an illness with fever (see photo above). Last Wednesday Luke again had seizures following an illness with fever, but this time he had 20 of them.

His first seizure occurred around 10 AM Wednesday morning. By 12:30 AM that same night he had had twenty of them. A couple of times he had 3-4 seizures in a row, which is considered somewhat dangerous. The doctors finally found a drug that worked (Dilantin) and he began to improve. His seizures stopped.

Unfortunately, he soon began having a severe side effect from one of the drugs he had been given earlier (Keppra). Beginning at 5:00 AM he began to experience extreme irritability and it lasted for the next 72 hours. He had difficulty sleeping and acted like a caged and frightened animal thrashing around in his padded crib.

To make matters worse, the valiam (Diazepam) causes temporary loss of motor skills. Because Luke had been given so much of it (a shot after almost every seizure), it was three days before he could walk, talk and eat again. I missed my little Lukers. I'm glad to have him back.

He's now been put on a maintenance drug called Depakote. We're watching to see if he develops any side effects from this, and hoping this drug will prevent seizures in the future. So far so good!

My interpretation of what is happening is that Luke is experiencing "complex" febrile seizures. Febrile seizures (seizures caused by fever) are common in young children up to age 5. But having more than one seizure in response to fever is not so common, hence the term "complex".

The extensive nature of his seizure activity puts him in a high risk group for developing chronic epilepsy. But there is no way to predict the outcome. All we can do is wait and see. We thank everyone who has helped us and prayed for us. Let's hope for the best!