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.
Each year, many organizations come together to promote awareness for Infantile Spasms through ISAW.
Dr. Hannah Glass and Adam Numis, two investigators of the Neonatal Seizure Registry, and members of Hope for HIE's Medical Advisory Board, recorded information about HIE and Infantile Spasms that can be accessed either below, or on our YouTube Channel through the Infantile Spasms playlist.
HIE itself places a child at higher risk for Infantile Spasms. However, there are certain elements of a HIE diagnosis that may further increase the risk:
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 ask their care teams the best way to send over videos of concerning movements to proactively have a plan for evaluation, should the need arise. Do this before you discharge from the NICU, at your appointments, and through any online medical record communication systems.
If you suspect Infantile Spasms, seek evaluation and treatment quickly. Don't mess with IS. Seek quick treatment of effective, front-line medications.
Know the signs to ‘STOP’ Infantile Spasms. Identifying spasms is critical for parents, caregivers and providers, and most critical for the children experiencing them.
Our peer perspective series hosted on YouTube has many topic areas covered bringing the experiences of the HIE community to fellow parents and families. You can watch or listen to the Infantile Spasms recording below.
Know you aren't alone. Hope for HIE's comprehensive programs and services are here for you and your family through this.
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