Infantile spasms—it was a term Connie Miller and her husband were unfamiliar with until their son Leitin started having seizures at six months old. “It was very scary. We didn’t know what was going on because with infantile spasms your body just startles,” said Connie.
Golisano Children’s Hospital pediatric neurologist, Dr. Guillermo Philipps, says children who have infantile spasms are at risk for having seizures later on in life. “One of the most common situations that occur is the seizures convert from something called infantile spasms to something called Lennox gastaut syndrome, which is multiple seizure types associated with developmental problems,” he said.
As Leitin got older, the presentation of his seizures started to change. “We went from the ones where he would startle, and he would have hundreds a day, and then to a zoned-out one, you would never know,” Connie said.
As children get older and enter adolescence, doctors say their seizures can change, even become uncontrolled—making it important to have the child monitored by a pediatric neurologist. “It’s hard to know in any specific case if that’s going to happen so we do close monitoring and then adjust when needed,” Dr. Philipps said.
Laitin has been seizure-free for six years. “It’s been amazing! It has been absolutely amazing! He listens, that’s what’s great about Dr. Philipps. He doesn’t just see him as a patient, he sees him as a person,” Connie said.
Keeping families informed and making sure children with seizures get the care they need.
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