(Silver Spring, MD, Thursday, November 29, 2018) – Every 12 minutes, a baby is diagnosed with infantile spasms. Infantile spasms (IS) are seizures, usually occurring in children under age one, which are often overlooked but constitute a medical emergency. This devastating neurological condition, if left untreated, can cause catastrophic, permanent damage in a child’s growing brain.

Prompt diagnosis and treatment are critical, but this is challenging because infantile spasms can be mistaken for normal baby movements or other disorders that don’t demand urgency. Emergency physicians and family practitioners are often the first to see a baby with infantile spasms.

Infantile Spasms Awareness Week (ISAW), held December 1 to 7, provides a unique opportunity to discuss disease awareness and treatment within the child neurology field.

Infantile spasms occur in up to 35 percent of children with tuberous sclerosis complex (TSC), a genetic disorder that causes tumors to form in various organs and is the leading genetic cause of both epilepsy and autism.

The first-ever preventive epilepsy trial in the United States specific to infantile spasms in tuberous sclerosis complex is currently underway but still recruiting infants.

Because they are more subtle than a typical grand mal or “convulsion” seizure, the acronym ‘STOP’ Infantile Spasms can help people remember what’s most important when recognizing the disease’s subtle symptoms:

  • See the signs: Clusters of sudden, repeated, uncontrolled movements like head bobs or body crunching.
  • Take a video: Record the symptoms and talk to your doctor immediately.
  • Obtain diagnosis: Confirm an irregular brain wave pattern with an EEG test.
  • Prioritize treatment: End spasms to minimize developmental delays.

The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex, while improving the lives of those affected. To learn more about Infantile spasms, visit ISWEEK.ORG.

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