Infantile spasms: What parents need to know

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U.S.A. (11/26/19)— Infantile spasms are a very serious condition that is often difficult to diagnose, characterized by a series of subtle seizures in infants under one year of age.

With only 1,200 infants diagnosed each year, and most pediatricians experiencing only one or two cases in their entire medical careers, these spasms are easily and often overlooked by both parents and medical professionals alike.

Currently, there is a trial, called the PREvENT Trial, that is looking into new treatments to stop these seizures.

Dave Johnson’s son, Noah, was diagnosed in utero, and Dave and his wife quickly enrolled him in the PREvENT Trial. Now, at eight months old, Noah is thriving and on track for normal development.

Kari Luther Rosbeck is a pediatric neurologist, President and CEO of the Tuberous Sclerosis Alliance, and lead researcher on the PREvENT Trial.

Together, Kari and David will be hosting a satellite interview on Tuesday, December 3, where they will be discussing:

  • What infantile spasms are and how to recognize the symptoms
  • What parents should do if they suspect their child could have IS
  • Latest research findings and details on the PREvENT Trial
  • How the Tuberous Sclerosis Alliance, the Infantile Spasms Action Network, families, physicians, and leading health organizations are raising awareness of this rare, but serious, condition.

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