There is very little useful information available on the web about infantile spasms. There is a mailing list and a number of BBS systems refer to infantile spasms; there is a UK support group, and many children on the ketogenic diet list have infantile spasms.

Internet resources

  Infantile spasms mailing list (1)   "A list for parents and care-givers of children with infantile spasms to discuss their children, treatment options and to offer support. Professionals are also welcome". Started by Jan Silbermann in 1998.

  Infantile spasms mailing list (2)    Another mailing list for parents of children with infantile spasms.  This link has links to stories of children with infantile spasms, and to resources.

  West Syndrome Support Group   The West Syndrome Support Group was formed in 1989, in the UK, by parents of children suffering from infantile spasms.

The group aims to provide support and information about this debilitating condition and its consequences for the child. A quarterly newsletter reporting the latest developments on the condition is published at the web site. The web site has a discussion forum. Other group activities include family days with guest speakers from various organizations and fund raising activities. Membership is open to all parents of children with infantile spasms.

  Infantile Spasms web ring   Links to a variety of sites relating to infantile spasms.  Stories of children and their struggles with the disorder.

Rob Ever's   Epilepsy in young children   contains profiles of a number of children (150+ at November 2002) suffering from infantile spasms.

The Massachusetts General Hospital runs a bulletin board system   Harvard neurology web forum for epilepsy which sometimes refers to infantile spasms

Many parents whose children have infantile spasms use the ketogenic diet and subscribe to the   Ketogenic diet list   or to the other   ketogenic diet list  .

Books on infantile spasms

The best current reference on infantile spasms is:

  Infantile Spasms and West Syndrome  

by Olivier Dulac, Harry T Chugani and Bernardo dalla Bernardina (Editors)
Published by WB Saunders Company Limited (24 - 28 Oval Road London UK NW1 7DX), 1994, ISBN 0-7070-1777-9

This is a collection of 24 papers surveying the current state of knowledge on infantile spasms. The thrust of this book is to review recent clinical, electroencephalographic and radiologic studies indicating that infantile spasms is not a single epileptic entity, but a heterogeneous group of epileptic encephalopathies. The various papers cover clinical manifestations, morphology and imaging, etiology, and treatment.

Other books on infantile spasms are:

  Neonatal Seizures  

by Claude G Wasterlain, Paul Vert (Editors)
Published by Raven Press, August 1990, ISBN: 0-8816-7641-1

Thirty papers from the International Colloquium on Neonatal Seizures: Pathophysiology and Pharmacologic Management held in September 1987 at Nancy-Pont-a-Mousson, France.

  Seizure Disorders in Children  

by Peggy C Ferry
Published by Lippincott-Raven Publishers, May 1986, ISBN: 0-3975-0617-1

  Infantile Spasms  

by Joseph R. Lacy
Published by Raven Press, June 1976, ISBN: 0-8900-4018-4

Papers on infantile spasms

Aicardi J
Infantile Spasms
In Epilepsy in Children, 2nd edition, Raven Press, New York (1994)

Kolodgie M
Home Care Management of the Child With Infantile Spasms
Pediatric Nursing 20:3; 259, 270-273 (May-June 1994)

Haines S and Casto D
Treatment of Infantile Spasms
Annals of Pharmacotherapy 28; 779-791 (June 1994)

Bobele G and Bodensteiner J
Infantile Spasms
Neurologic Clinics 8:3; 633-645 (August 1990)

Kellaway P et al
Precise Characterization and Quantification of Infantile Spasms
Annals of Neurology 6; 214-218 (1979)

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