Deep Bench: Infantile spasms are rare but dangerous

Published: Dec. 3, 2019 at 5:12 PM CST
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December 1-7 is Infantile Spasms Awareness Week. Leading neurology groups are raising awareness about the very serious and difficult-to-diagnose condition.

Infantile spasms are characterized by a series of subtle seizures occurring in infants under age one. They are often subtle enough to be easily overlooked by both parents and health care providers and are considered a medical emergency. Infantile spasms are frequently misdiagnosed as colic, acid reflux or even a surprise reflex. When overlooked, they can cause catastrophic, permanent damage to a child’s developing brain.

About 1,200 children in the United States are diagnosed with infantile spasms each year, and awareness is critical because treatment options are available to improve babies’ quality of life.

An easy-to-remember acronym helps parents who suspect their child might be suffering from infantile spasms STOP.

- See the signs

- Take a video

- Obtain diagnosis

- Prioritize treatment

The earlier a child is diagnosed and treated, the greater the chances that the spasms can be stopped.

Current clinical trials are looking into new treatments to stop these seizures. Dave Johnson’s son, Noah, is a current participant in the PREvENT trial and was diagnosed in utero with a rare disorder that often leads to infantile spasms.

Dave and his wife understood the severity of infantile spasms and quickly enrolled Noah in the trial. Noah is now a thriving eight-month-old on track for normal development.

Johnson and Kari Rosbeck, president and CEO of the Tuberous Sclerosis Alliance, joined the Deep Bench on Tuesday to discuss infantile spasms.

For more information about the symptoms and treatments of infantile spasms, visit and follow the conversation using the hashtag #ISAW2019.

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