Child Neurology Foundation: Fourth Annual Infantile Spasms Awareness Week Scheduled For December 1-7

MINNEAPOLIS, Nov. 30, 2018 /PRNewswire/ -- From December 1 to 7, 2018, a coalition of organizations will mark the fourth annual Infantile Spasms Awareness Week (ISAW). The goal of ISAW is to increase awareness and understanding of infantile spasms through the distribution of objective educational materials to providers, caregivers, and the public; the announcement of new and useful research and support initiatives; and the declaration to patients and caregivers that help is available, and hope exists.

Infantile spasms (IS) are a medical emergency and are a rare, but very serious type of seizure. Infantile spasms usually occur in children under age one, are often overlooked, and can cause catastrophic, permanent damage to a child's developing brain. Prompt diagnosis and treatment are critical, but this is challenging because infantile spasms can be mistaken for normal baby movements (e.g. colic or reflux) or other disorders that don't demand urgency.

Because infantile spasms are more subtle than a typical grand mal or "convulsion" seizure, members of the Infantile Spasms Action Network (ISAN) have established 'STOP' Infantile Spasms to help people remember what's most important when recognizing the disease's subtle symptoms:

• See the signs: clusters of sudden, repeated, uncontrolled movements like head bobs or body crunching
• Take a video: record the symptoms and talk to your doctor immediately
• Obtain diagnosis: confirm an irregular brain wave pattern with an EEG test
• Prioritize treatment: end spasms to minimize developmental delays

"Pediatricians, emergency care physicians, and family practitioners are often the first to see a baby with infantile spasms, so awareness of IS symptoms and prompt action are absolutely critical," stated Amy Brin Miller, Executive Director of the Child Neurology Foundation (CNF). "Moreover, parents and caregivers often report their concerns are not heard by their providers, meaning infantile spasms are often overlooked. However, the earlier the child is diagnosed, the greater the chances the spasms can be effectively treated."

ISAW 2018 includes social media campaigns directed to the public and parents, national and local media interviews, physician awareness projects, and activities at the American Epilepsy Society annual meeting in New Orleans.

2018 ISAN partner organizations include: American Academy of Neurology | American Academy of Pediatrics | American College of Emergency Physicians | American Epilepsy Society | Association of Child Neurology Nurses | Bcureful | Belgium TSC | The Brain Recovery Project: Childhood Epilepsy Surgery Foundation | Child Neurology Foundation | Child Neurology Society | CURE Epilepsy | Danny Did Foundation | Dup15q Alliance | Epilepsy Foundation of America | Global Genes | Greenwich Biosciences | INSYS Therapeutics | LGS Foundation | Mallinckrodt Pharmaceuticals | Mickie's Miracles | National Organization for Rare Disorders (NORD) | RARE Science | Seizure Tracker | Tuberous Sclerosis Alliance | The UK Infantile Spasms Trust (UKIST) | Upsher-Smith Laboratories.

For more information, visit www.ISweek.org.

SOURCE Child Neurology Foundation (CNF)