Infantile spasms (IS), also known as West syndrome, is a severe epilepsy diagnosis defined by a triad of infantile spasms, often an abnormal EEG pattern (hypsarrhythmia), and developmental regression. IS affects infants between 4 and 12 months old and accounts for as much as 5% of all childhood-onset epilepsy. Research has shown that accurate initial evaluation and treatment is essential for patients with IS as over 40% of patients do not respond to the first treatment therapy. Infantile spasms can present as sudden “jerking” or “startle” movements of the neck, arms, legs and trunk. However, they can also present as smaller or subtle movements of the eyes, head or shoulders. Usually, infantile spasms occur in clusters of several seizures in a row. There are several causes of infantile spasms such as structural, metabolic, genetic, or of unknown cause.
The diagnosis of infantile spasms can be delayed for weeks or months because parents, and even physicians, may not recognize the movements as seizures. The epileptic spasms may be misdiagnosed as manifestations of colic, Moro reflexes, or startle responses by pediatricians. Early recognition of infantile spasms is essential to timely initiation of treatment.
The Infantile Spasms Clinic
Lurie Children’s Infantile Spasms (IS) Program is a multidisciplinary team consisting of a nurse practitioner, pediatric epileptologists, social worker, genetic counselor, ketogenic dietitian, and registered nurse. In addition, the IS team works closely with other specialties including psychiatry, neuropsychology, developmental pediatrics, and physical medicine at the Shirley Ryan AbilityLab.
Lurie Children’s IS team has established a guideline and clinic for the diagnosis, etiological work-up, treatment, monitoring, and follow-up of infantile spasms that is supported by the best evidence and expert recommendations. Our clinic was established to provide specialty care to patients with IS requiring urgent initial diagnosis, management of infantile spasms with the best treatments available, and support of a weekly clinic for monitoring and EEG follow-up.
Entry into the infantile spasms program is done through admission to Lurie Children’s for IS diagnosis or our Epilepsy Center’s physician referrals. To schedule an appointment with one of our epileptologists, call our Epilepsy Center at 312.227.3540.