When Rasmussen’s Strikes
Date: March 31, 2013
After Kelley Philhower began suffering seizures at age 5, her family took her to a medical center near their Ohio home. Following tests there, a neurologist gave them the grim news—she had Rasmussen’s encephalitis, a rare inflammatory condition resulting in intractable seizures and a progressive deterioration of one side of the brain. The diagnosis was bad enough, says Kelley’s mom, Nancy Philhower, but how the neurosurgeon gave her the news made it even more jarring: “His words were, ‘She’s going to have the left half of her brain removed and she’s going to walk, act and look like a stroke victim,’ which hit us like a brick wall. Needless to say, we didn’t like their approach.”
Philhower immediately began searching the Internet for a treatment center well-experienced in treating Rasmussen’s, and “Johns Hopkins” kept popping up. She called. Yes, we can take care of Kelley, pediatric neurologist Adam Hartman and pediatric neurosurgeon George Jallo said, but her diagnosis and treatment options would be determined by a multidisciplinary group of pediatric neurologists, neurosurgeons and neuro-immunologists, among other specialists.
“It’s a pretty comprehensive look at what’s going on,” says Hartman. “Because of our experience and the full spectrum of services we offer here, we’re not necessarily committed to a single treatment.”
Kelley’s evaluation included imaging studies to precisely localize the affected part of her brain to determine how its removal would affect her functions. The group recommended intravenous immunoglobulins (IVIG) or surgery. Even though studies have reported some good effects of IVIG on seizures and neurological functions, in most cases the immunotherapy does not eliminate seizures. With the surgery, called a hemispherectomy, Hartman explained, Kelley would be seizure-free but she would temporarily lose use of her right arm and leg and, likely, her ability to talk because the affected left hemisphere is dominant for language. Those functions would be restored, though likely not completely, through rehabilitation and the plasticity of the young brain—the ability of its remaining half to take over what was lost.
“We’ve seen Mother Nature flip the language function over to the other side,” Hartman explains. “But rehabilitation, like the pre-surgery evaluation and surgery itself, is critical. To help parents through this process, we connect them with other families who have gone through the surgery, rehabilitation and post-surgery experience.”
In the meantime, Kelley’s seizures had increased in severity and frequency—to every 15 minutes or so—and the family chose surgery, which Kelley underwent with surprising results. Kelley was walking with a therapist within a week and on her own by three weeks.
“Her language has increased a ton, and she’s not had a single seizure since the surgery,” says her mom. “She’s definitely been handed a second chance by Drs. Jallo and Hartman, who are very caring individuals with immense knowledge and big hearts, too.”
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