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Rasmussen's encephalitis

Rasmussen's encephalitis is a rare, progressive neurological disorder, characterized by frequent and severe seizures, loss of motor skills and speech, hemiparesis (paralysis on one side of the body), encephalitis (inflammation of the brain), dementia, and mental deterioration. more...

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The disorder, which affects a single cerebral hemisphere, generally occurs in children under the age of 10.


When seizures have not spontaneously remitted by the time hemiplegia and aphasia are complete, the standard treatment for Rasmussen's encephalitis is surgery to remove or disconnect the affected part of the brain (hemispherectomy). Although anti-epileptic drugs may be prescribed initially, they are usually not effective in controlling the seizures. Alternative treatments may include plasmapheresis (the removal and reinfusion of blood plasma), ketogenic diet (high fat, low carbohydrate), and steroids.


Prognosis for individuals with Rasmussen's encephalitis varies. Untreated, the disorder may lead to severe neurological deficits including mental retardation and paralysis. In some patients surgery decreases seizures. However, most patients are left with some paralysis and speech deficits.


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Girl, 14, thrives with half of brain
From Chicago Sun-Times, 10/7/01 by Michael Rubinkam

BRISTOL, Pa.--Christina Santhouse entered high school last month.

Not unusual for most 14-year-olds, but a big deal for a girl living without the right side of her brain. It was removed five years ago after Christina developed a rare, progressive disease that causes uncontrollable seizures. To be sure, the radical procedure left Christina with serious side effects: She has partial paralysis of her left arm and leg and lost peripheral vision in her left eye. And when she jerks her head the wrong way, she can feel fluid sloshing around the space where part of her brain used to be.

In almost every other respect, though, Christina is a typical teenager. Her intellect and memory are fine. She hates algebra, loves 'N Sync. She's got a big "Keep Out" sign on her bedroom door.

"I'm just like any other kid," says the shy, soft-spoken blonde.

Her mother knows this is not quite true. And Lynne Catarro says she agonizes over the part of her daughter that was cut away.

"I'm waiting for that day when she becomes very angry and blames me for everything," says Catarro, 40. "She's going to hate me."

Christina's disease, Rasmussen's encephalitis, is an autoimmune disorder that typically strikes children under 10 and may be caused by a virus or immunological reaction.

"It gradually eats away at one hemisphere like a Pac Man, leaving a very debilitated, very handicapped and quite retarded individual," said Dr. John Freeman, one of Christina's doctors and a pediatric neurologist from Johns Hopkins Hospital in Baltimore.

In Christina's case, the disease first appeared as a small tremor in her left foot during a family vacation on the New Jersey shore. An emergency room doctor immediately sent Christina to St. Chris- topher's Hospital for Children in Philadelphia. After three days of tests, a neurologist delivered the devastating diagnosis.

It was August 1995. Christina was 8 years old.

"I was there physically," says Catarro, "but once I heard him say that, I think I mentally left the room."

The doctor prescribed an anti-seizure medication and explained several possible treatments. The tremors worsened. A month later, Christina went to Johns Hopkins.

While the initial diagnosis had been hard enough to take, Freeman suggested a cure that seemed infinitely worse: He wanted to perform a hemispherectomy, removing the diseased right side of the brain. He said it would stop the seizures.

"Barbaric," Catarro thought. She wanted to reject Freeman's advice, but the doctor said the choice wasn't entirely hers.

To Christina, he said: "You need to decide when you're ready for the surgery--not your mom, not your grandmother and grandfather. And when you're ready, you call me."

Christina's health grew worse. Seizures wrenched her body more than 100 times a day. She could anticipate their severity: A small one she called an "appetizer," a large one, the "main course." Aftershocks were "dessert."

Still, she continued her karate lessons and soccer league and rarely missed a day of school. The seizures were relatively brief and she always stayed conscious.

But she knew this way of life couldn't continue. In December 1995, the third-grader wrote Freeman a letter.

"I'm ready now," it read.

Johns Hopkins has performed more than 100 hemispherectomies, the only cure for Rasmussen's. For up to 12 hours, neurosurgeons carve out the affected half of the brain, taking care to leave the deep structures--the thalamus, brain stem and basal ganglia.

Younger children are thought to do better than older ones and adults because their brain cells "haven't decided what they want to do when they grow up," said Dr. Benjamin Carson, a neurosurgeon who operated on Christina.

Thus, the remaining half of the brain can assume the functions of the lost side, he said. Hemispherectomy sometimes even improves intelligence because it eliminates seizures and the need for anti- seizure drugs.

Christina was wheeled into surgery in February 1996.

Fourteen hours later, Carson emerged from the operating room, and Christina was in the recovery room.

In the following days, she suffered an intense headache, much worse than any migraine. Her face was swollen and she could only move one side of her mouth.

Yet a month and a half later, she was back in school. She made a scrapbook of her ordeal. Next to a photo showing the extracted part of her brain, Christina wrote: "My seizures are going to the Dumpster!"

Five years later, she has entered a Catholic high school in suburban Philadelphia. Like most freshmen, she worried about making friends and getting lost in a strange building.

So far, so good, although classmates don't always know what to say when she tells them about her surgery. "They just go, 'Oh, that's nice,"' says Christina.

Like her mother, Christina relies on faith to get through the difficult times. She also finds satisfaction counseling other families facing hemispherectomy.

"I've had some weak moments, when I feel sorry for myself and think I have the worst luck, but this happened for a reason," she said. "God only gave it to me because I could handle it."

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