Infantile Spasms Awareness

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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. 

 

December 1-7: Infantile Spasms Awareness Week

Each year, many organizations come together to promote awareness for Infantile Spasms through ISAW. This year, Hope for HIE is working 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 are scheduled and are open to the public, hosted on the Hope for HIE Foundation Facebook Page.

 

STOP for IS

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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:

http://www.infantilespasmsproject.org/

https://www.childneurologyfoundation.org/programs/infantilespasms/

https://rarediseases.org/physician-guide/infantile-spasms/

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