title: Infantile spasms (West syndrome): update and resources for pediatricians and providers to share with parents.
abstract: BACKGROUND
  Infantile spasms (IS; West syndrome) is a severe form of encephalopathy that typically affects infants younger than 2 years old. Pediatricians, pediatric neurologists, and other pediatric health care providers are all potentially key early contacts for families who have an infant with IS. The objective of this article is to assist pediatric health care providers in the detection of the disease and in the counseling and guidance of families who have an infant with IS.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors: University of Tennessee Health Science Center, Memphis, TN, USA. jwheless@uthsc.edu
authors: James W
authors: JW
authors: Wheless
authors: Patricia A
authors: PA
authors: Gibson
authors: Kari Luther
authors: KL
authors: Rosbeck
authors: Maria
authors: M
authors: Hardin
authors: Christine
authors: C
authors: O'Dell
authors: Vicky
authors: V
authors: Whittemore
authors: John M
authors: JM
authors: Pellock
mesh_terms: D000324:Adrenocorticotropic Hormone / Q000627:therapeutic use; D000927:Anticonvulsants / Q000627:therapeutic use; D003266:Continuity of Patient Care; D037001:Directive Counseling; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D010290:Parents; D010353:Patient Education as Topic; D010372:Pediatrics; D013036:Spasms, Infantile / Q000175:diagnosis / Q000188:drug therapy / Q000503:physiopathology; D020888:Vigabatrin / Q000627:therapeutic use
chemical_list: D000927:Anticonvulsants; D000324:Adrenocorticotropic Hormone; D020888:Vigabatrin