Learn More About IS and Spread the Word!

ISAN looks forward to more engaging awareness efforts this year! Help us spread the word! The messaging below can be shared on social media or in other partner communication networks. Please use this site ISweek.org and #ISAW2020.

Infantile Spasms (IS) are a medical emergency. Infantile spasms are a rare, but very serious type of seizure.

Infantile spasms (IS) are seizures, usually occurring in children under age one, which are often overlooked. IS can cause catastrophic, permanent damage to a child’s developing brain.
  • Infantile spasms are caused by a condition in a baby’s brain and include repetitive, but often subtle movements—such as jerking of the mid-section, dropping of the head, raising of the arms or wide-eyed blinks. IS can be misdiagnosed as colic, reflux, or a startle reflex.
  • While infantile spasms appear as subtle movements – not as outwardly visible as grand mal or “convulsion” seizures – they are still a dangerous form of epilepsy.
  • Often, infantile spasms occur in quick succession—sometimes dozens at a time. A baby can have more than 100 seizures in one day!
  • Worldwide, it is estimated that a baby is diagnosed with infantile spasms every 12 minutes.
  • 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 the leading genetic cause of both epilepsy and autism.

Know the signs to ‘STOP’ Infantile Spasms. Urgent identification is critical for parents, caregivers and providers.

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.
  • Pediatricians, emergency care physicians, and family practitioners are often the first to see a baby with infantile spasms (IS). Awareness of IS symptoms and prompt action are critical.
  • Parents and caregivers often report that their concerns are not heard by their providers and infantile spasms are overlooked, but they should feel empowered to pursue more investigation.
  • The earlier a child is diagnosed, the greater the chances that the spasms can be effectively treated.
  • A helpful mnemonic tool – an easily remembered acronym—is ‘STOP’ Infantile Spasms:
    • See the signsClusters of sudden, repeated, uncontrolled movements like head bobs or body crunching.
    • Take a videoRecord the symptoms and talk to your doctor immediately.
    • Obtain diagnosisConfirm an irregular brain wave pattern with an EEG test.
    • Prioritize treatmentEnd spasms to minimize developmental delays
  • To download the STOP IS graphic elements, including the logo and animated video, click here.
    • Select the file you’d like to access and click on the “Download” button in the top right corner.
  • The animated video can also be shared via YouTube: https://youtu.be/rCC92Q52hdk.

We’re raising awareness about Infantile Spasms in hopes of a brighter future. Awareness leads to opportunity!

Each year, Infantile Spasms Awareness Week (ISAW) provides a unique opportunity to discuss disease awareness within the child neurology field.
  • Held December 1-7, Infantile Spasms Awareness Week helps parents, as well as physicians and other health care providers, know about this disease and treatments.
  • To join the conversation on Twitter, use the hashtag #ISAW2020. Together we can STOP IS!