Neurosurgeon Gary Mathern, M.D., director of UCLA’s Pediatric Epilepsy Program, describes his practice as “little kids with big bad brains,” and he takes each child he operates on into his heart. “I have an emotional tie to every one of these kids,” Dr. Mathern says. “This is about changing kids’ lives, and after the surgery, they become part of the family.”
The experience of Thomas that is told in the Fall 2010 issue of UCLA Medicine is not so different from those of other children with intractable epilepsy who Dr. Mathern has treated. Here are a few of their stories.
DR. MATHERN PERFORMED SURGERY on Sophie Flicker, now 2-1/2 years old, in May 2009, eliminating the infantile spasms that originated from the right side of her brain. But three months later, Sophie started having different kinds of seizures that came from the left hemisphere. She underwent surgery again in February 2010, and has been free of seizures since.
“I can see that she’s not having interruptions in her thought process,” Sophie’s mom, Jami Flicker, says. Though she is a year behind in her development, Sophie “is happy, she’s not having seizures, she’s walking and working on running,” her mother says.
BAO HEFFRON, NOW 6 YEARS OLD, was having 60-to-80 infantile spasms a day before he underwent surgery on his right parietal lobe at New York University, the other large center in the United States for TSC treatment, when he was 13 months old. That stopped the spasms but not the seizures. The team at UCLA re-tested Bao and found that the seizures were still coming from the parietal area. When Bao was 22 months old, Dr. Mathern removed more of the parietal lobe. “For the first 22 months of his life, he was practically comatose with seizures,” Ron Heffron, Bao’s father, says. “Two weeks after the surgery, we had a follow-up appointment with Dr. Mathern. The kid who couldn’t walk before the surgery walked into Dr. Mathern’s office.”
AMELIA AND ABBY COOPER, NOW 11 YEARS OLD, are identical twins with TSC. Their brains look almost identical on an MRI, with numerous tubers on both sides of the brain. But they suffered completely different clinical effects from the disease. Amelia started having seizures when she was 2 weeks old. She had surgery on her left temporal lobe when she was 2 years old. Her sister, however, never developed a regular seizure pattern and never had to be put on medication. Abby did have surgery when she was 7 years old to remove growth in her ventricle – called subependymal giant cell astrocytomas (SEGA) – that affect 10-to-20 percent of people with TSC.
While Amelia is globally delayed and functions at about half of her chronological age, Abby has a normal IQ. “They have the same brain mass of tubers,” says April Cooper, their mother and the head of the Southern California TS Alliance. “So it has to be related to the seizures or the placement of where the tubers are.”
Despite their differences, the twins have developed a wonderful sisterly relationship. “Abby is like a big sister, and Amelia treats Abby like her voice,” Cooper says. “When Amelia gets frustrated or she has a problem, she seeks out Abby as the person to help her.” -- Lyndon Stambler