IV treatments' impact on seizures

Keziah Jermyn is 5, but the Rochester girl doesn't remember past Christmases.She was too consumed by seizures that began at age 3.But this Christmas will be different.

Keziah (pronounced KEZZ-ee-uh) would be fine one moment, then suddenly fall to the ground for a few seconds in what seemed like fainting spells. These unpredictable drop seizures left her with cuts or bruises, knocked out her front teeth, made her tired and disrupted her life.

Seizures are caused by abnormal, excessive firing of brain cells that triggers involuntary movement or loss of consciousness.Keziah's seizures soon began lasting longer, then struck in her sleep. She would scream out and cry, which was heartbreaking, says her mother, Theresa "Tracy" Jermyn, 35.

"There was nothing any of us could do for her," says Jermyn, a single mother to Keziah and brothers Noah, 9, and Garret, 12.When the abnormal firing spread to the whole brain, Keziah's body would convulse for a minute or two in grand mal or generalized tonic clonic seizures.

"I don't think they ever got less shocking," says her mother, who became exhausted and frantic trying to protect her daughter from injury and stop the daily attacks. At their worst, seizures struck 15 minutes apart, at least 20 times a night.

Keziah was put on one after another of the roughly 10 major medications used to treat epilepsy, the neurological disorder defined by repeated seizures. None helped — which is very unusual.
A medically supervised ketogenic diet — a difficult high-fat regimen of mostly heavy cream and butter — didn't help."We were pretty desperate," says Dr. Michel "Mike" Berg, neurologist and medical director of Strong Epilepsy Center in Rochester. Keziah wasn't a good candidate for surgery because imaging tests didn't precisely locate the origin of her seizures, says Berg. "We had exhausted, essentially, all options."

In June, after 18 months of seizures, Berg turned to intravenous immunoglobulin G, a type of infection-fighting protein extracted from blood. These antibodies have been used for 30 to 40 years in selected seizure cases. IgG is the primary treatment for certain immune deficiencies, but hasn't been studied in a systematic, randomized way for epilepsy, says Berg.

Keziah began with four days of eight-hour infusions in June. Over the past six months, she's had one, six-hour infusion every three weeks. She hasn't had a seizure since July 4.

"She had a miraculous response to this treatment," Berg says of Keziah. "We hope that's sustained."In 20 years, Berg has used IgG in five patients with epilepsy. A few, but not all, had a good response.

Each IgG treatment costs about $6,000, Berg estimates. If it works, he says, that's substantially less than the lifetime cost to society of someone who's unable to function because of chronic epilepsy.

Jermyn, who works in provider relations at Excellus BlueCross BlueShield, doesn't pay that much, but the various out-of-pocket costs to address the seizures have added up. She pays $70 per infusion, plus $20 for every doctor's office visit and each electroencephalogram to measure and record the brain's electrical activity. The medications, often abandoned in less than a month, had cost her $40 apiece. Each of the seven hospitalizations last year cost another $100 out of pocket, plus $50 for emergency room visits.

Now, Keziah takes no medication. She has learned to write letters and spell her name in kindergarten. She likes to color and to jump on a trampoline with her brothers.

Halloween was all new to her. She was delighted to learn she could dress up as Shirley Temple — with all-natural ringlets — and get candy.More recently she heard that another holiday was coming. "Mama, I want to be Hannah Montana for Christmas," she announced, before understanding more about the gift-giving religious holiday.

"It's so much fun," her mother says. "This is really the big Christmas gift for us."