Local mother pushing for more research of rare seizure disorder infantile spasms

Local mother pushing for more research of rare seizure disorder infantile spasms

Logan March is a fighter. He's battled more at a year old than most people face in a lifetime.

At four months old, doctors discovered a brain malformation, causing stroke utero, but the worst was yet to come. Doctors diagnosed Logan with infantile spasms, a rare neurological disorder that often goes undiagnosed among babies.

"One of the top words that come up is catastrophic and detrimental," said Logan's mother Lyla Puggioni.

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The seizures can happen anywhere from 100 to 200 times a day.

"Sometimes they're as simple as an eye roll where his eyes roll back into his head," said Puggioni.

Treatment for infantile spasms is expensive. A bottle of ACTH, a steroid used to control the spasms, costs $45,000 and not all insurance companies cover the medication. For those that are lucky enough to get it, there's no guarantee that it will work. The disorder has a 5% mortality rate and those that do survive can go on to have serious developmental delays.

“The medications that we have work some of the time but not all of the time,” said Dr. Danielle Pier, Pediatric Neurologist MGH. "It’s not something you’re aware about or know about. It can look really similar to a kid with bad colic or heartburn or irritability. If you don’t know what it is or know to look for it can be easily missed.”

"As mom I'm supposed to fix everything, I'm supposed to make everything better and this is the one thing I couldn't do," said Puggioni.

Little is known of infantile spasms, which is why it often goes undiagnosed. Parents and doctors want more research done.

"It needs the same attention that childhood cancer gets or childhood diabetes or things of that nature. It deserves the same attention," she said.

Logan's mom says she won't give up until that happens.

"I can't fix him, I can't make him better. I can just fight for him and other children like him."