Infantile Spasms (IS) are a medical emergency
Infantile spasms are a rare, but very serious type of seizure. 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. 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.
Infantile spasms is a rare and particularly severe epilepsy syndrome that typically begins within the first year of life. Infantile spasms is characterized by subtle seizures which can have large neurological effects, potentially leading to developmental delays and cognitive and physical deterioration.
Sadly, many primary care doctors and parents alike are not familiar with the signs and symptoms of infantile spasms. So, many children with infantile spasms do not receive treatment during the critical window within the weeks and months after the emergence of symptoms.
That’s why it’s critical for everyone to know the signs to STOP Infantile Spasms.
For Parents & Caregivers
Infantile Spasms (IS) are a medical emergency – “Time is Brain”
Infantile spasms can cause permanent brain damage if not treated immediately. Every moment counts—prompt diagnosis and treatment are critical to prevent long-term harm.
Early recognition of Infantile Spasms can save your child’s brain.
IS often presents as subtle, repetitive movements—such as head drops, body crunches, or jerking motions—that can be mistaken for other conditions. Act fast if you notice these signs.
Parents must trust their instincts and act quickly.
If your baby shows unusual movements, like head bobs or sudden body crunches, seek medical attention immediately. If your concerns are dismissed, get a second opinion from a pediatric neurologist.
For Healthcare Providers
Healthcare providers are on the frontlines—treatment must begin within 7 days.
Pediatricians, ER doctors, and neurologists must detect IS quickly. Treatment within 7 days of diagnosis is critical to prevent long-term neurological damage.
Every day of delayed treatment increases the risk of permanent damage.
Immediate diagnosis and treatment of IS can prevent severe complications, including continued seizures and developmental problems. Delays worsen the outcome.
Healthcare providers must maintain a low threshold for suspicion.
IS can be misdiagnosed as colic or reflux. Stay vigilant for symptoms like head drops, small crunches, or uncontrolled movements. Immediate referral and EEG testing are essential.
Infantile Spasms in the News
Read one mother’s story – as it appeared in Newsweek – about her child’s diagnosis with Infantile Spasms at 4 months old.
Infantile Spasms Action Network
Learn more by visiting the Infantile Spasms Action Network (ISAN) website.
Epilepsy Alliance America is a proud member of the Infantile Spasms Action Network (ISAN) – a collaborative network of 30+ national and international entities dedicated to raising awaress for IS. ISAN is currently being convened by Cure Epilepsy.