Infantile Spasms: A dangerous condition

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Awareness encouraged about epilepsy disorder in babies

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KINGSTON, LUZERNE COUNTY (WBRE/WYOU) — Pediatricians are raising awareness this week about a rare and very serious condition that affects babies. Infantile spasms are difficult to diagnose and considered a medical emergency.

Infantile spasms can produce some subtle but noticeable symptoms. Left untreated, the consequences could be devastating for young children as Eyewitness News Healthbeat Reporter Mark Hiller explains.

It may look like an infant with a case of the hiccups. But a baby shown in a video is actually experiencing subtle seizures called infantile spasms.

“The parents come in and say my child just seems like they’re shaking or they have some hiccups or I wonder if my child has reflux,” said Jeffery Kile, MD with PAK Pediatrics in Kingston.

Dr. Kile has treated very few cases of infantile spasms which can have a catastrophic impact on the developing brain. The age-specific seizure condition affects one in 2,000 children less than a year old.

“So, it can be caused by brain malformations, by brain injury during birth, metabolic disorders, genetic disorders,” said the pediatrician.

Infantile spasms can sometimes be detected while baby is still in the mother’s womb. It happened to the Johnson family of Fredericksburg, Virginia whose then-unborn son at 34 weeks gestation was diagnosed with a tumor condition that can lead to infantile spasms.

Dave Johnson said, “It’s hard to take but when you see all of the research and what has been done in this arena, it gives you hope.”

Hope because of treatment available for children Mr. Johnson’s infant son, Noah who’s enrolled in groundbreaking research called PREvENT. It looks at the impact of the drug vigabatrin. Results have been promising.

“He is 11 months old now, has met his milestones for his development. We’re not seeing those developmental delays currently.”

It underscores the importance of recognizing infantile spasms which the Tuberous Sclerosis Alliance says can be done through a four-step acronym called STOP.

Tuberous Sclerosis Alliance President/CEO Kari Luther Rosbeck said, “First thing is See the signs. Second is “T”: Take a video. Everybody walks around with smartphones. It’s really easy to capture. “O” is obtain a diagnosis. And then the “P” is prioritize treatment.”

Vital steps to STOP infantile spasms. Dr. Kile said, “Just think about the brain. It’s firing oddly and if you can control that, you hopefully can have better outcomes.”

December 1 – 7 is considered Infantile Spasms Awareness Week.

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