Thanks to participation of families from across the USA, we are pleased to report that the results from our latest Neonatal Seizure Registry study have been published in a top journal! We learned that, for children experiencing acute provoked neonatal seizures (i.e., due to brain injury), in most cases stopping anti-seizure medicine before a child goes home is safe. This is different than the usual practice at many centers, where it is common to prescribe anti-seizure medicines for several months or longer.
We also learned a lot about the challenges that parents of newborns with seizures can face. After being discharged from the hospital, many families experienced stressors related to finances, mood, coping, navigating uncertainty, and adapting family life. To help support families, we developed the infographic included in this post, which includes resources to help parents support themselves and their families.
We know the COVID-19 pandemic has impacted family life for almost everyone. Many parents just haven’t had the time or energy to think about participating in studies, even though they know the studies are important. Our research coordinators are available to help make enrolling and completing follow-ups in the Neonatal Seizure Registry studies as easy as possible, whether that means navigating the websites or reading questions on the phone. Every participating family is important to our work. The information we learn from each and every child is valuable to our shared long-term goal of preventing disability and epilepsy, and helping every child with neonatal seizures reach their full potential.
Be sure to check out the resources on the Neonatal Seizure Registry page below, and share the infographic squares widely.
Hope for HIE is a proud patient advocacy organizational partner of the Neonatal Seizure Registry.
***This post was created by NSR and Hope for HIE, using information adapted from the NSR
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
