IS Awareness Week

Infantile Spasms (I.S.) is a neurologic emergency that typically begins in the first 4 to 8 months of life and is characterized by bending and jerking of the infant’s torso, neck, arms and legs. An episode can range from a subtle head jerk to spasms that lasts for a few seconds. Most often, these spasms occur in clusters. Hear Child Neurology Foundation president Dr. Don Shields answer the most commonly asked questions about infantile spasms:


It is quite common for infantile spasms (which is a very rare form of epilepsy) to be overlooked or misdiagnosed, thereby delaying the proper evaluation and early treatment – the longer infantile spasms go untreated, the greater the chance of long-term cognitive impairment.


There are now two FDA-approved treatments for infantile spasms (Acthar and Vigabatrin). The goal of treatment is to eliminate the visible spasms AND the near-invisible hypsarrhythmia (a chaotic brain wave abnormality) typically detected using an EEG.


Our organization is supporting the efforts of the Child Neurology Foundation (CNF) to promote greater awareness and understanding of infantile spasms.  We encourage you to visit to learn more about how infantile spasms is diagnosed and treated. The site features a Parent Mentor Network to help connect parents of newly-diagnosed children with parents who have been through the experience.


If you suspect your child might be suffering from infantile spasms, we encourage you to meet with a child neurologist as soon as possible for diagnosis and proper treatment.