Daily seizures were tough on Fernando Guevara and his family, until a new procedure gave them hope that he could escape the cycle.
Fernando was born with a hypothalamic hamartoma — a benign (noncancerous) tumor that develops on the hypothalamus. This portion of the brain controls the body’s internal balance and can affect hunger and thirst. As a result, Fernando was frequently agitated and it could be difficult to get him to eat.
The tumor also produced an electrical disruption in his brain. These electrical signal issues caused Fernando to have unpredictable seizures, sometimes as often as eight times a day.
“Fernando began having seizures when he was 18 months old,” said Blanca Guevara, Fernando’s mother, whom he lives with in Far Rockaway. “They could be strong. On many occasions, he would fall and hit his head or another part of his body. Other times, they were mild, and he would just laugh.”
Because his seizures could be violent and happen at any time, Fernando always needed a family member by his side. Ms. Guevara said the situation made her feel powerless.
Finding Answers for Seizures
Ms. Guevara brought Fernando to the Pediatric Epilepsy Division at Cohen Children’s Medical Center in April 2015. Cohen’s is officially certified as a Level 4 Epilepsy Center — the highest achievable rating from the National Association of Epilepsy Centers.
“Our high-volume center offers a full range of diagnostic and treatment options specifically geared toward pediatric patients,” said Shefali Karkare, MD, program director of Cohen Children’s Pediatric Epilepsy Center and Pediatric Neurology Residency Program. “Our epilepsy monitoring units allow us to observe patients and see what is happening inside their brains during a seizure. We are an ideal place for patients like Fernando, who not only have epilepsy at a young age but also deal with seizures that are difficult to treat.”
Dr. Karkare noted that fevers are the most frequent cause of seizures in children. Febrile seizures, as they are called, might occur more than once and are considered harmless if lasting less than 15 minutes. Febrile seizures may be the first symptom of underlying epilepsy.
“Seizures can be caused by underlying health conditions, such as tumors or blood clots, so it is vital to identify the cause and treat it appropriately,” Dr. Karkare said. “The sooner you seek help for your child’s seizures, the better.”
For Fernando, magnetic resonance imaging and other tests confirmed the diagnosis of hypothalamic hamartoma and helped rule out other possible causes of his frequent seizures. Fernando’s case of epilepsy did not respond to medication or other conservative therapies.
“When we are working with patients to correct epilepsy, nutritionists, neurologists, imaging specialists and others all have an important role,” Dr. Karkare said. “In Fernando’s case, the answer wasn’t so simple. Medications didn’t work. Dietary changes didn’t help. But there was a surgical option that seemed like a good fit.”
Minimally Invasive, Major Impact
On Jan. 19, Fernando became the first patient at Cohen Children’s to undergo a minimally invasive procedure called Visualase. Pediatric neurosurgeons Mark Mittler, MD, and Steven Schneider, MD, used detailed images of the tumor and Fernando’s brain to carefully place a probe containing laser fiber into the tumor. This probe then delivered light energy to destroy the mass. The surgeons used thermal imaging to confirm targeting and destruction of only unhealthy tissue.
The surgery was a success. Fernando returned home two days later. Now 16, he still experiences occasional seizures, but they are much less serious. He’s also calmer, and his appetite is returning.
“I am very grateful to the doctors and the hospital for giving us a more normal life,” Ms. Guevara said. “I’m hopeful. Thanks to their help, things are different now.”
Read the spring 2016 issue of Kids First.