BLOG

November is Epilepsy Awareness Month

November 15th, 2020 | By HOPE FOR HIE FOUNDATION

Epilepsy is one of the more common diagnoses to come from HIE, and there are certain types of seizure disorders that HIE children are more prone to developing. According to research studies, HIE makes children five times more vulnerable to developing epilepsy at some point in their life. In addition, HIE is a leading cause of several rare types of epilepsy. We are grateful to participate in many different research and organizational collaboratives to address this population within the HIE community, and work to move forward treatments and therapies to improve the quality of life for families with HIE and epilepsy.

Many babies and children experience seizures at the onset of HIE
HIE is one of the leading causes of Infantile Spasms, a type of epilepsy. If not treated aggressively, IS can cause developmental regression.
IS most commonly develops in the first 4-8 months post-injury
Once seizures are controlled post-injury, the likelihood of developing a form of epilepsy ranges from 9% to 33% in children who experienced seizures at time of injury, and five times the risk of developing epilepsy, according to current research.
Projects like the Neonatal Seizure Registry, that Hope for HIE participates in, are working on long term studies to give more accurate information.
Other rare forms of epilepsy that are more prevalent in the HIE community includes Lennox-Gastaut Syndrome (LGS) and Electrical status epilepticus in sleep (ESES).
Common developmental times for children to develop epilepsy tend to be around developmental cognitive leaps (ages 4-8), and puberty
There are many treatment options, including medications and surgery, and what works for one person, may not work for another.
Hope for HIE is a part of several collaborative groups addressing the various seizure types that are common with HIE including the Rare Epilepsy Network, Infantile Spasms Action Network, and the Neonatal Seizure Registry project.
Hope for HIE is also partnering with the Epilepsy Foundation of America to develop HIE-specific seizure first aid and informational training.