Luke’s Story

Luke
Luke’s first seizure was a tonic clonic in his sleep when he was 3 years 2 months. We called 911 because we had no idea what was happening. He had an EEG and CT Scan. The EEG showed some seizure activity but the CT scan was clear. He then had another tonic clonic five days later, also in his sleep, so we started generic Keppra. Then in the next two weeks, he has 4 more tonic clonics, again all in his sleep, two requiring Diastat to stop. They ranged in length from 1 minute to 14 minutes. A few days later, the myoclonics started. They were usually head drops, and little puffs of air and typically occurred within a few hours after waking in the morning or after nap. There were times when he would fall if he was standing. He sometimes had 5 or 6 of those a day, and sometimes up to 80. He would also have absence seizures in the car, lasting from 30 seconds to 2 minutes. During that entire time, his doctor continued raising the dose of Keppra. When we were at 80 mg/kg/day, we finally started seeing a decrease in seizures. A few weeks after that, he had 3 more tonic clonics, again all in his sleep. Then we raised his med to 100 mg/kg/day and the seizures stopped. He endured seizures from May 8, 2009 to July 20, 2009, which is a short time frame in hindsight, but did not feel that way at the time.

When Luke had been seizure free for nearly 2 years in May 2011, he had another EEG. The EEG showed one spike, when he was very drowsy. His doctor suggested that we wean anyway, saying that every kid should get the chance to see if they can be seizure free and medication free. So we weaned. Luke has now been med free for nearly 3 months, and has remained seizure free. During the time that he was taking meds, we did not raise the dose for any growth. His dose was 7 ml twice per day. We weaned that in 14 weeks, taking away .5 ml from each dose, once per week.

Luke is now 5 ½ and is in kindergarten. He does great in school and is not behind at all. His teacher tells us how smart he is. He goes to a Montessori elementary school, which is great for him. His school does have Diastat and a seizure response plan, should anything ever happen.

We do not have a strong history of epilepsy in the family although Luke’s maternal grandmother’s cousin does have it. This is the only link we have found.

Luke has had some sensory issues for most of this time, and does still have some.

Luke is a beautiful boy. He is very caring of others. He loves sports, especially hockey and superheros. He also loves to ride his four wheeler and play with his buddies. He is so fun and brings an enormous amount of joy to us. He is our little superhero!