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Luke: Battling Epilepsy and Winning
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Luke started having seizures shortly after his second birthday. “I was in the house and Luke was outside with one of our neighbors, an older teenager,” says his mother Karen. “Someone came in and told me that Luke had fallen. I ran outside and our neighbor was coming toward the house, carrying Luke in his arms. I’d had no experience with epilepsy and didn’t know the signs. I thought he was passing away.”
In fact, Luke was having his first grand mal seizure. He was diagnosed with epilepsy in 2005 at the age of 4, following his third episode. “His seizures were 6 to 8 months apart,” Karen says. “They lasted only a few minutes but when you’re the parent watching the child, those minutes feel like hours.
Following his diagnosis at another hospital, Luke was put on two antiepileptic medications. “We weren’t seeing any progress,” Karen says. “It was summer, almost time for him to go back to school, and his seizure activity was increasing. So in 2007, we went to Children’s Memorial Hermann Hospital and started treatment with Dr. Von Allmen.”
Gretchen Von Allmen, M.D., is the director of the Pediatric Epilepsy Program at The University of Texas Medical School at Houston and an assistant professor of pediatrics in the Division of Child and Adolescent Neurology. In November 2007, after adjusting Luke’s medication over a period of 12 weeks, Dr. Von Allmen admitted him to the Epilepsy Monitoring Unit (EMU) at Children’s Memorial Hermann to evaluate his seizures. His medication was stopped, electrodes were placed on his scalp and he was monitored 24 hours a day for a week. The two seizures he had in the EMU allowed Dr. Von Allmen to determine that they were localized in the brain, making Luke a candidate for resective surgery for epilepsy.
Dr. Von Allmen and James Baumgartner, M.D., talked with Karen and her husband Chuck about more extensive monitoring with electrodes placed directly on the brain to further localize the seizures and identify potential functional areas at risk. Dr. Baumgartner is a pediatric neurosurgeon affiliated with Children’s Memorial Hermann and an associate professor of pediatric surgery at UT Medical School.
“When we met Dr. Baumgartner, he told us, ‘I can’t imagine being a parent and listening to a doctor tell me that he wanted to remove a portion of my child’s brain. But from my side of the desk, I can tell you that this is the best thing you can do for your child,’” Karen remembers. “Both doctors were confident about the outcome but even so, it took us a few months to prepare ourselves mentally for the procedure.
Luke underwent surgery on September 4, 2008, to have 208 electrical leads placed in his left and right hemispheres to monitor the electrical activity of his brain. He was still in the Epilepsy Monitoring Unit when Hurricane Ike hit Houston on September 13. He and his mother rode out the storm along with other patients too critical to be discharged and the staff members who left their homes and families to care for them.
“We can’t say enough about the great care we got in the EMU,” Karen says. “Those nurses love what they do, and it shows in how well they take care of their patients. They really made our long stays in the unit as comfortable as possible."
On September 19, after localizing the seizure activity on the right side, Dr. Baumgartner removed a small area of Luke’s brain. He was discharged on September 22.
Luke was home schooled by a teacher for the next three months and returned to his elementary school in January 2009. He has no mental deficits and has had no seizures since the surgery.
“Luke’s epilepsy has been a tragedy for us in some ways, but it’s also been a huge blessing,” Karen says. “Members of our community came together to support us, and Luke’s school and classmates were also incredibly supportive. The Epilepsy Foundation of Southeast Texas started an epilepsy awareness program at Luke’s school so that everyone would know what to do if he had a seizure. Because we didn’t know what was happening to Luke when he had his first seizure, advocacy has become important to us. We’ve all learned from his experience.”
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