For too many kids with HIE, loss in childhood can be an eventual outcome. HIE is incredibly complex, and the parenting journey taking care of children who may have shortened life spans brings unique challenges, with many questions, feelings and decision-making along the way that can feel very isolating. Justin Yan’s daughter, Mila, was born in March 2015 with HIE. […]
EEGs can be very stressful to prepare for, live with, and clean up the literal mess they cause. But, with so many families going through them with their children, we’ve assembled the best advice, and some links from other vetted medical organizations to help you out. What is an EEG and why would my child get one? EEG (Electroencephalogram) is […]
Epilepsy is one of the largest impacts from HIE, Hypoxic Ischemic Encephalopathy. Children across all outcomes can develop epilepsy, and HIE is a leading cause of several rare types of epilepsy such as Infantile Spasms, Lennox-Gastaut Syndrome, and ESES. Since seizures and HIE are so common, we recommend all families learn more about Seizure Action Plans, and go through Seizure First Aid training. Hope for HIE also supports all legislative efforts to improve the prevalence of Seizure Action Plans and Seizure First Aid through the Seizure Safe School campaign through the Epilepsy Foundation.
Sleep issues are very common with HIE (hypoxic ischemic encephalopathy), and across all outcomes. Sleep interruptions with HIE have a link to the sleep/wake cycle. We recently sat down with Dr. Chris Carosella, double-boarded Pediatric Neurologist & Sleep Medicine specialist, and Hope for HIE Medical Advisory Board member, to discuss sleep issues in children with HIE and other neurological conditions. […]
If your child has experienced seizures, even if they are under control, or you had resolved neonatal seizures, a Seizure Action Plan is an important tool for anyone in your child’s life to be aware of. Seizure Action Plans outline what to do in case of a seizure for your child. This could include when to call 911, a bit […]
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