11/02/2025
November is Epilepsy Awareness Month
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Epilepsy is one of the most common diagnoses to come from HIE, & there are certain types of seizure disorders that HIE children are more prone to developing.
๐ Many babies and children experience seizures at the onset of HIE, in fact, HIE is the top cause of neonatal seizures.
๐ HIE is the second leading cause of Infantile Spasms (IS), a type of epilepsy. The onset of IS is considered emergent, so we recommend all newly diagnosed HIE families learn about their childโs risk profile, what they look like & how to elevate concerns quickly with your medical team for quick diagnosis & treatment (Hopeforhie.org/infantilespasms).
๐ IS most commonly develops in the first 4-8 months
๐ Hope for HIE is a proud partner of the Neonatal Seizure Registry, which is working on long-term studies to fill data gaps, education for professionals, and improvement in care.
๐ The work through NSR has changed guidelines for when it is safe to stop anti-seizure medications after neonatal seizures.
๐ There are many types of seizures and seizure disorders. Some are easier to treat, and some are more aggressive.
๐ Other forms of epilepsy that HIE leads as the top cause include ,
๐ Common developmental times for epilepsy onset later in childhood tend to be around developmental cognitive leaps (ages 4-8), and puberty, most frequently starting at the sleep/wake cycle.
๐ There are many treatment options, including medications and surgery, and what works for one person, may not work for another.
๐ Hope for HIE is a part of several advocacy & research collaboratives working to improve the care for the various seizure types that are common with HIE including the Rare Epilepsy Network, Infantile Spasms Action Network, Epilepsy Leadership Council & Epilepsy Action Network.
๐ Life with epilepsy can be tough, but there are many resources, support, & lots of research being done to improve, control & prevent it.
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