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Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

Infantile Spasms Awareness

HIE and Infantile Spasms (IS)

HIE is the second 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, and the Neonatal Seizure Registry.

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, both whom serve on Hope for HIE’s Medical Advisory Board, to further educate our community through ISAW.

Educational Videos: HIE & Infantile Spasms 

Infantile Spasms Q&A: The Basics
Infantile Spasms Q&A: Treatments
Infantile Spasms Q&A: What’s Next & Research

Risk Factors & Key Things to Know

HIE itself places a child at higher risk for Infantile Spasms. However, there are certain attributes of a HIE diagnosis that may further increase the risk:

  • Babies that experienced neonatal seizures
  • Severely abnormal EEGs
  • Thalamus, basal ganglia or brainstem injury on MRI
  • Abnormal tone on newborn exam

Typical onset of Infantile Spasms is between 4-8 months, and the onset is considered a medical emergency. If you suspect your child has developed IS, implement the STOP for IS protocol below. 

We recommend all HIE families find out the best way to send over videos of concerning movements to their medical team to proactively have a plan for evaluation, should the need arise. 


STOP for IS

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



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