Digging deeper for answers on infantile spasms
By Romi Herron For The Courier-News September 12, 2012 11:46AM
Connor Ostrowski plays in the family's back yard.
Updated: October 14, 2012 1:25PM
SOUTH ELGIN — Mindy and Jay Ostrowski’s infant son Connor had dozens of seizures each day, and physicians told them he would never smile or recognize them again.
But that prognosis was unacceptable to the South Elgin couple, and their relentless pursuit of answers and treatment brought their now-toddler son to seizure-free status. As he recovers, they’re working to raise awareness about the rare condition.
“This was the one form of epilepsy that basically erases everything from the brain,” said Mindy. “He was born healthy; and when he was about 2 months old, it started.”
At first, the seizures were trance-like and almost undetectable — but for a mother’s watchful eye.
“He would just stare to the right,” Mindy said. “It would be hard to pull him out of it.”
Though subtle, the episodes were damaging. The family would later learn Connor’s condition is called infantile spasms.
“It’s the most catastrophic form,” said Jay. “It has the most morbidity and mental retardation, and often goes undetected and untreated.”
At 2.5 months, Connor’s seizures became more significant.
“He would have these startle reflexes where he would have like 50 per day, 50 clusters,” said Mindy, a fourth-grade teacher at Creekside Elementary School in Elgin.
Physicians were at first unable to pinpoint a condition, let alone a management plan. With each passing day, Jay, Mindy, and their son Jacob, 3, watched Connor regress. Then an EEG at Sherman Hospital in Elgin changed their course.
“Within an hour of having the EEG, he got his diagnosis,” Mindy said. Deep in research, and armed with questions, the couple next met with neurologists to explore treatment options.
In Connor’s favor was his physical strength. At normal height and weight, with normal milestones before the seizures, he’s been able to endure tests, procedures and lots of unknowns.
After multiple medications, Connor responded to a steroid injection that costs $25,000 per vial. Jay said insurance covered the cost although the approval process was lengthy.
“We saw instant results with that (steroid),” he said. “But it causes the kids to blow up like a balloon. Hypertension becomes a concern.”
At age 6 months, Connor wore clothes big enough for a 2-year-old. Keeping him on drugs for the rest of his life was “not an option,” Jay said. And then their visual therapist mentioned a surgical candidacy at Cleveland Clinic. A PET scan proved Connor had a malformation on the right side of his brain, qualifying him for the surgery. Jay said every test performed was a critical piece to the puzzle.
In March, Connor had brain surgery. Since then, he’s had no seizures. Surgery caused peripheral vision loss on his left side, but he’s being weaned off the phenobarbital that both parents feel contributed to developmental delays. Also, he’s learning sign language for now, since he’s not talking yet. But like other toddlers, he walks, laughs, throws balls, pets his dog and wears a Superman cape at playtime.
He’s a good eater, too, Mom and Dad say, adding they know their son might develop another form of epilepsy. But for now, they focus on his day to day progress, and 4-year-old Jacob’s upcoming Spiderman birthday party.
The two brothers frequently engage in play therapy, with Jacob taking the lead and encouraging Connor with methods he’s observed at the sessions with Mom.
Mindy is part of an infantile spasm support group and lends her time to help others learn about and cope with the condition. Focus and determination are top recommendations from the Ostrowskis.
“Don’t automatically settle for what the doctor says if you feel in your gut that something isn’t right with your baby,” said Mindy. Jay emphasized education is key. “Keep digging; that’s what we did,” he said. “The whole idea that he may never walk, he may never talk — that was never accepted.”
More information about the Ostrowski family and infantile spasm is available online at www.connorostrowskifund.com.