Aicardi syndrome

Injury	Disease	Nutrition	Poison

Symptoms	Surgery	Test	Special Topic

Corpus callosum of the brain

Aicardi syndrome

Treatment:

Primarily involves medical management of seizures and any other health concerns, early and continuing intervention programs, and therapies for developmental delays.

Support Groups:

Aicardi Syndrome Newsletter was established in 1984 by the mother of a daughter with Aicardi Syndrome in order to provide information and support for families due to the extremely rare nature of this disorder.

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Publications include a bimonthly newsletter brief, and 2 to 3 large digests annually, which are distributed to member families worldwide. The newsletter has also published yearbooks, family directories, and 2 medical-model surveys of affected daughters.

Contact: Denise Parsons

1510 Polo Fields Court

Louisville, KY 40245

(502) 244-9152

E-mail: aicnews@aol.com

Aicardi Syndrome Foundation, A.S. F. is a not-for-profit, tax-exempt organization, incorporated in 1991. Working in cooperation with the Aicardi Syndrome Newsletter, the Foundation is funded by private donations and various fundraising events.

The A.S.F. has contributed financially to research into the causes of Aicardi Syndrome, and provides funds for the purchase of medical and adaptive equipment for affected daughters, publication and distribution of the Newsletter, and biannual Aicardi Family International Conferences.

Contact: Al and Cindy Meo

450 Winterwood Drive

Roselle, IL 60172

1-800-374-8518

E-mail: aicardi@aol.com

Additional information can be found at the Aicardi Syndrome web site: www.aicardisyndrome.org

Expectations (prognosis):

Prognosis varies widely depending upon the affected child?s overall health and severity of symptoms. Nearly all have severe learning difficulties, although a few have some language abilities and some can walk independently or with support.

Many remain totally dependent for their care. The known age range of affected children is from birth to 30 years of age.

Complications:

Complications vary according to the degree and severity of symptoms.

Calling your health care provider:

Call your health care provider or seek emergency care for spasms in an infant or epileptic seizures.