Infantile Spasms (IS) is a rare seizure disorder occurring in just one out of every 2000 children under the age of two. About 1,200 children in the United States are diagnosed with infantile spasms each year. Infantile spasms occur in an estimated 40 percent of children with tuberous sclerosis complex (TSC), a genetic disorder that causes tumors to form in various organs and the leading genetic cause of both epilepsy and autism.

These seizures are little, but they cause BIG consequences. Early diagnosis and accurate treatment are critical to provide optimal developmental outcomes for these babies. IS is frequently misdiagnosed as Colic, Normal Startle Reflex or Reflux. When left untreated, IS can cause significant intellectual disabilities, standstill of normal development process and regression of previously-acquired milestones. Most pediatricians will encounter one to two IS cases throughout all their years of practice. This lack of exposure can cause delays in receiving an accurate diagnosis and appropriate treatment.

The average age of onset is between four to six months. Each spasm or seizure may last one to two seconds, but often appear in clusters that can last several minutes.

an info graphic about stopping infantile spasms


What should you watch for?

  • Interruption of behavior – personality changes
  • Forceful drop of the head
  • Lifting and extension of the arms and legs
  • Bending forward at the waist
  • Subtle forward drops of the head
  • Subtle eye deviations (ie. eyes widening quickly) in a pattern or cluster, especially when lying down
  • Repetitive forward head nodding, bobbing or turning to one side
  • Stiffening of the neck, trunk, arms and legs
  • Thrusting arms to the side, elbows bent
  • Crossing arms across body as if self-hugging
  • Drawing up of the knees when lying down

In the video of Mickie here, please note the subtle epileptic spasms that occur at :26, :56 and 1:08 when her head drops..

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