Friday, August 24, 2007

Therapy with horses has done miracles for toddler with seizures

Amanda Ivancevich has seen much of the world through the glass of a hospital window.In her last trimester, Amanda suffered a stroke inside her mother's womb.The first six months of her life were normal, but soon Amanda's eyes began to cross. Then recurring seizures shut down half her brain.In her three years, Amanda has spent nearly half her life between one intensive care unit and the next, fighting off the cerebral power failures."

We went from having a normal baby, to a baby with seizures, to a child with no hope of full development," said her mother, Susan Ivancevich.Doctors had to remove the damaged left side of Amanda's brain to save her life, which left her paralyzed on her right side.For the past year, recovery has not come from inside a sterile environment but outdoors, strapping on a green jockey's helmet and holding on tightly to the reins of a dappled pony.

Told she would never be able to use her right side, the 3-year-old has defied that devastating prognosis using what she's learned from riding her therapeutic riding horse, Flash."Look at her go," shouted Eldon Thigpen, owner of Hanover Stables in Castle Hayne, where Amanda's family boards their horses. There, Amanda has become the darling of the corral.

Before beginning hippotherapy- or therapeutic horseback riding - Amanda could barely hold herself up."She couldn't do that before," Thigpen said, referring to the sudden straightening of Amanda's back from a slumped over position. "The quality of her life has improved so much."Hippotherapy has improved Amanda's chances for normal development, her family said, after she was diagnosed with infantile spasms, or IS, a disease that affects 1 in every 2,000 to 4,000 births."We never thought we would be that statistic," Susan Ivancevich said.

The treatment has become increasingly popular for patients with developmental disabilities because it uses the repetitive nature of equine movement to develop balance, posture and muscle tone, according to Barbara Yost, communications director for the North American Riding for the Handicapped Association.Susan Ivancevich said she grew up around horses and thought adding one to Amanda's routine would help her daughter overcome the disease.Most children with IS endure severe developmental delays, including profound mental retardation, a phrase Ivancevich said she remembers hearing with stinging frequency."

They told me she had a 99 percent chance of being profoundly retarded, with an IQ less than 20," Ivancevich said.The Ivancevich family followed a number of treatment options including ACTH, a powerful hormone injection. But the aggressive medication made Amanda feel like she was on pins and needles, Susan Ivancevich said.Drugs provided only temporary relief. Her parents were desperate for a solution, saying some days she would suffer more than 100 seizures.

"It didn't matter what she was doing, she would just collapse and pull forward like a jackknife," Susan Ivancevich said. "Everything short circuits for a second or two."Doctors at the University of California Los Angeles were using functional hemispherectomies - a procedure that removes parts of the nonfunctioning brain - to combat seizures in children. The eight-hour surgery was Amanda's only alternative.Susan Ivancevich said she remembers being terrified when she saw Amanda after her surgery."It was scary," she said. "She was twitching and jerking because her brain was getting used to the change.

She had this massive bandage on her head, where doctors had stapled her skull back together."Today, Amanda attends eight different kinds of therapy a week, ranging from speech to occupational therapy. But her favorite is on horseback."As far as we can see, whenever she comes out and does any riding, she just gets so energized," said Dianne Hermanson, Amanda's grandmother, who helps manage the schedule while Amanda's parents work as full-time professors at the University of North Carolina Wilmington.

"She has heightened awareness for at least three days after riding," Susan Ivancevich said. "She can grab things and hold her balance."The horseback riding has augmented Amanda's progress in other therapies, she said. Amanda's can't speak yet, but she lets out high-pitched squeals when she is happy.It's the little things that become victories for Amanda, whether it's raising her head, wiggling her finger or even a squeaky giggle. It's enough to excite everyone around her."She sits up for two seconds, and you'd think we won the Olympics," Hermanson said.

Amanda's limbs were practically useless after surgery, Hermanson said. Simple muscle movements are no longer impossible for Amanda, thanks in part to Flash."Before, her hands were so tight - it was a like a vice," Hermanson said as she watched Amanda raise her right hand, unfurled in delight. "We had to peel her fingers to get it open."Her parents have kept a record of Amanda's progress through a blog, an online diary.They've chronicled every moment from Amanda's first smile to her latest doctor's appointment.

At the stables, everyone watched as the jolly jockey's luminous blue eyes gleamed from behind prescription glasses. Her golden ringlets bounced up and down to the rhythm of Flash's trot. Her mouth stretched open to release a squeal of delight.Spectators melted in fascination. Amanda's improvement has touched many of those around her. "She's been wonderful for all of us, just to watch what she can accomplish," Barbara Thigpen said. "It kind of makes you feel bad about complaining that you have a headache when you watch what Amanda's done."

Amanda's recovery prompted her parents to establish a foundation that would promote and fund research for IS as well as bring therapeutic riding to underprivileged children. Many of the doctors that have worked with Amanda serve on the Infantile Spasms Foundation's board of directors, which is awaiting tax exemption for nonprofit status."It's so humbling to be her mom," Susan Ivancevich said. "She's tough as nails and sweet as can be."


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