HIE and Infantile Spasms (IS)
HIE is a leading cause of Infantile Spasms, a dangerous and emergent seizure and form of epilepsy. Left untreated or undertreated, IS can cause developmental regression and even additional brain damage.
Hope for HIE is working to further educate our community on the importance of accurate and quick identification, aggressive treatment, and follow up care to ensure our children have the best possible outcomes.
Through the Child Neurology Foundation, many resources are available for families and practitioners about Infantile Spasms.
Hope for HIE is a member of the Infantile Spasms Action Network, working collaboratively with other organizations and researchers to raise awareness for Infantile Spasms.
CLICK HERE to download Infantile Spasms printable materials.
December 1-7: Infantile Spasms Awareness Week
Each year, many organizations come together to promote awareness for Infantile Spasms through ISAW. In 2019, Hope for HIE worked with two leading pediatric neurologists, Hannah Glass, MD and Adam Nunis, MD from UCSF to further educate our community through ISAW.
Three Facebook LIVE! events took place and are hosted on the Hope for HIE Foundation Facebook Page
- Infantile Spasms Q&A: The Basics
- Infantile Spasms Q&A: Treatments
- Infantile Spasms Q&A: What's Next & Research
STOP for IS
Child Neurology Foundation
This helpful mnemonic tool – an easily remembered acronym—is STOP Infantile Spasms:
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
Know the signs to ‘STOP’ Infantile Spasms. Identifying spasms is critical for parents, caregivers and providers.
ADDITIONAL RESOURCES ON INFANTILE SPASMS: