Imagine having a 7-year-old son with epilepsy – a son who for two years has been experiencing up to 40 seizures each day.
School is virtually impossible. The wood and metal desks are dangerous; the block walls in the cafeteria are dangerous. Everything around him becomes a danger when he has a seizure.
At home, it is just as bad. This child, who had been a lively, healthy little boy who lived to play baseball, cannot be left alone for a moment – not even for as long as it takes to unload the car. You know, because you did that once on a Christmas Eve. Before you could return to the house, he had fallen through a glass table. The rest of the evening was spent in an emergency room.
Eating is an ordeal, too. His face is dotted with bruises suffered when his face struck his plate during a seizure. Besides that, the medications he takes leave him with little appetite. You watch as he grows more and more frail.
The seizures are worse at night and, for you, there is no rest. You worry, too, about his older sister – about the impact her brother’s condition is having on her life.
Imagine you are this child. You can no longer play sports or really do much of anything with your friends. On the rare occasion when you try to go to the mall, you have a seizure. People stare. You feel embarrassed.
Imagine your name is Kace Lightsey, and all you want is to be a normal kid again.
Now, imagine finding hope.
“For two years, we were constantly here at Children’s Hospital,” recalls Shiann Jones, Kace’s mother. “Everyone was working so hard to try to find out what was wrong, and I remember meeting Dr. Knowlton (Robert C. Knowlton, MD, MSPH, a UAB neurologist) and hearing him say he believed Kace was a candidate for epilepsy surgery.
“It took me a while to educate myself about the procedure – to understand what it would do and the implications both good and bad. But we were at the point where I knew there was no other choice. We couldn’t live like we were – with no hope. It had become clear that Kace was never going to have any kind of life with the almost constant seizures.”
By that time, Kace himself was ready for anything that could possibly put an end to his seizures. “I just kept telling myself, ‘I’m going to get better. I’m going to get better.’ So when I heard about the surgery, I said, ‘I’m ready if it is going to help get me back where I can play with my friends.’”
Pediatric Neurosurgeon Jeffrey P. Blount, MD, says Kace’s story is not unusual – in fact, he hears similar stories every day. He says he came to Children’s Hospital eight years ago so he could develop a world-class, purely pediatric epilepsy surgery program to help these children and their families.
“Epilepsy is a catastrophic condition, and one of the hardest things about it is its terrible unpredictability,” he says. “Many of our patients are absolutely normal except for this electrical storm in their brain that comes out of the blue, unexpectedly, and robs them of their capability to be attentive, to carry on a conversation, to be there in the moment.
“A person who has epilepsy can go from interacting in a meaningful way with their world and their friends and family to being completely incapacitated, completely humiliated, at just a second’s notice,” Dr. Blount adds.
An earlier epilepsy surgery program at Children’s had become less active in the decade prior to Dr. Blount’s recruitment. But during the same period, the development of better pediatric imaging modalities was heralding a re-emergence of the notion of surgical intervention as an option for children whose epilepsy could not be treated with medications.
“In addition, we had learned over the past 15-20 years that children with medically intractable epilepsy often have a structural abnormality in their brain,” Dr. Blount explains. “Simultaneously, we had the development of surgical techniques that make localization and removal of portions of the brain more safe.”
For children like Kace, epilepsy surgery had become a very viable treatment.
“Kace received a brain injury in a fall when he was 5 years old, and he subsequently suffered a stroke,” says Dr. Blount. “His seizures began in earnest about six months later, and he was identified as a candidate for surgical intervention after having seizures for almost two years.”
Kace came out of the surgery sitting upright and asking for a chocolate milkshake.
“I knew then it was all worth it – all the anguish, all the preliminary studies,” says Shiann. “I never imagined he would be sitting up on the gurney after that kind of brain surgery. And then to go home and have a kid who could sit at the table and eat his dinner and play his video games – these were the simple, everyday things which before had been completely lost to us.”
According to Dr. Blount, more and more families are now benefiting from pediatric epilepsy surgery. “Our program is growing by leaps and bounds, and children do well in our purely pediatric environment,” he says, citing the importance of board-certified pediatric anesthesiologists, pediatric epileptologists, pediatric radiologists, nurse practitioners, nurses and EEG technicians. “All of our people are in this because they are really interested in treating children with severe epilepsy.”
At the same time, Dr. Blount says it is not at all unusual that Shiann first learned about the possibility of epilepsy surgery for Kace from a UAB physician.
“We interface very smoothly with the UAB Comprehensive Epilepsy Center, which is one of the most accomplished programs in the nation,” he says. “Some of the doctors who evaluate patients for us and to whom I look for guidance in difficult cases spend the majority of their time doing adult care. This relationship with the UAB Center also gives our young patients opportunities to participate in drug trials or to undergo testing using imaging modalities available on the UAB campus.”
Up to 40 Alabama children will have epilepsy surgery at Children’s this year, but Dr. Blount says five times that number are probably good candidates for some sort of resection. “Surgical treatment for epilepsy is a vastly under-utilized resource,” he says. “There are many other children out there who would benefit from having a surgical evaluation and a carefully constructed surgical intervention.
“Another of our goals is to identify these children quickly and efficiently. Epilepsy surgery should be considered early in the process – absolutely not as an option of last resort.”
Unfortunately, the service is a costly one. The surgical evaluation is a labor- and time-intensive process, according to Dr. Blount. “The insurance companies have not yet established a reimbursement criteria for it, so sometimes we have had to turn to grants to get a child evaluated,” he explains. “This work consumes a lot of resources, but it also makes an astronomical difference in the lives of our patients.”
Shiann says she appreciates the technological advances that gave her son – and her family – their lives back, but it is Dr. Blount’s compassion that she always will remember.
“Before Kace’s operation, he told me, ‘I’m going to do surgery on your baby. I am going to take out part of his brain, but I am going to bring you back a better child who is going to have a wonderful long life.’ And I knew he meant that – that he said it with his heart. And I think that’s the biggest thing – he’s a wonderful doctor with a wonderful heart!” View Video