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Infantile spasms (West syndrome): update and resources for pediatricians and providers to share with parents

DOI: 10.1186/1471-2431-12-108

Keywords: West syndrome, Encephalopathic epilepsy, ACTH, Vigabatrin, Infantile spasms, Treatment, Continuum of care, Community resources, Seizures, Infants

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Treatment guidelines, consensus reports, and original research studies are reviewed to provide an update regarding the diagnosis and treatment of infants with IS. Web sites were searched for educational and supportive resource content relevant to providers and families of patients with IS.Early detection of IS and pediatrician referral to a pediatric neurologist for further evaluation and initiation of treatment may improve prognosis. Family education and the establishment of a multidisciplinary continuum of care are important components of care for the majority of patients with IS. The focus of the continuum of care varies across diagnosis, initiation of treatment, and short- and long-term needs. Several on-line educational and supportive resources for families and caregivers of patients with IS were identified.Given the possibility of poor developmental outcomes in IS, including the emergence of other seizure disorders and cognitive and developmental problems, early recognition, referral, and treatment of IS are important for optimal patient outcomes. Dissemination of and access to educational and supportive resources for families and caregivers across the lifespan of the child with IS is an urgent need. Pediatric health care providers are well positioned to address these needs.Infantile spasms (IS; West syndrome) is a severe form of epilepsy of early infancy [1]. Although IS was first described over 160?years ago [1], its diagnosis, evaluation, and management continue to pose many challenges to health care professionals and affected families. Educating pediatricians and general pediatric health care providers about IS may be especially important as a recent IS working group (ISWG) of pediatric neurologists reviewed the literature and determined that early recognition of IS and prompt treatment are mandatory and may improve developmental and cognitive outcomes in some patients [2]. IS presents with myoclonic-tonic seizures (spasms) that may be characterized by fle


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