Resources

This list of external sites is provided for informational purposes only. Inclusion on this list does not imply endorsement by the Aicardi Syndrome Foundation.

Books on Special Needs Parenting

For summaries and explanations of some recent articles, see:

Relevant Articles from the Van den Veyver Laboratory and

Other Articles

Resource Links & Journal Articles

• Diet

  • Ketogenic diet – Wikipedia Information about the ketogenic diet to control epilepsy.

• Education

  • From Emotions to Advocacy The Special Education Survival Guide by Pam & Pete Wright.

• Enrichment

  • My Picture Gallery Enriching the lives of disabled and seriously ill children through photography and therapeutic scrapbooking.

• Journal Articles

  • Aicardi syndrome Aicardi J. Brain Dev. 2005 Apr;27(3):164-71.
  • Aicardi Syndrome Rosser T. Department of Neurology, Center for Neuroscience and Behavioral Medicine,Children’s National Medical Center, Washington, DC 20010, USA. Arch Neurol. 2003 Oct;60(10):1471-3.
  • Aicardi syndrome King AM, Bowen DI, Goulding P, Doram RML, Br J Ophthalmol 1998;82:456.
  • Aicardi syndrome in a girl with mild developmental delay, absence of epilepsy and normal EEG Matlary A, Prescott T, Tvedt B, Lindberg K, Server A, Aicardi J, Stromme P. Department of Paediatrics, Ulleval University Hospital, Oslo, Norway. Clin Dysmorphol. 2004 Oct;13(4):257-60.
  • Aicardi syndrome with favorable outcome Yacoub M, Missaoui N, Tabarli B, Ghorbel M, Tlili K, Selmi H, Essoussi A. Service de pediatrie, CHU Farhat-Hached, 4000 Sousse, Tunisie. Arch Pediatr. 2003 Jun;10(6):530-2.
  • Aicardi syndrome with favorable outcome: Case report and review Grosso S, Lasorella G, Russo A, Galluzzi P, Morgese G, Balestri P. Brain and Development. 2007; 29:443-446.
  • Aicardi syndrome with multiple tumors: a case report with literature review Trifiletti RR, Incorpora G, Polizzi A, Cocuzza MD, Bolan EA, Parano E. Department of Neurology, Neuroscience and Pediatrics, New York Hospital-Cornell Medical Center, NY, USA. Brain Dev. 1995 Jul-Aug;17(4):283-5.
  • Aicardi syndrome: a morphologic description with particular reference to intracytoplasmic inclusions in cortical astrocytes Buchino JJ, Nicol KK, Parker JC Jr. Department of Pediatrics and Pathology, School of Medicine, University of Louisville, Kentucky, USA. Pediatr Pathol Lab Med. 1996 Mar-Apr;16(2):285-91.
  • Aicardi Syndrome: Follow-Up Investigation of Swedish Children Born in 1975-2002 Palmer L, Zetterlund B, Hard AL, Steneryd K, Kyllerman M. Neuropediatrics. 2007;38:188-192
  • Aicardi syndrome: presentation at onset in Swedish children born in 1975-2002. Palmer L, Zetterlund B, Hard AL, Steneryd K, Kyllerman M. Neuropediatrics 2006 Jun; 37(3):154-8.
  • Aicardi's syndrome. A clinicopathologic study. McMahan RG, Bell RA, Moore GR, Ludwin SK, Arch Ophthalmology 1984; 102: 2503
  • Callosal agenesis, chorioretinal lacunae, absence of infantile spasms, and normal development: Aicardi syndrome without epilepsy? Prats Vinas JM, Martinez Gonzalez MJ, Garcia Ribes A, Martinez Gonzalez S, Martinez Fernandez R. Dev Med Child Neurol. 2005 Jun;47(6):419-20; discussion 364.
  • Choroid plexus papilloma and cysts in the Aicardi syndrome: case reports Uchiyama CM, Carey CM, Cherny WB, Brockmeyer DL, Falkner LD, Walker ML, Boyer RS. Department of Neurological Surgery, University of Utah School of Medicine and Primary Children’s Medical Center, Salt Lake City 84113. Pediatr Neurosurg. 1997 Aug;27(2):100-
  • Choroid Plexus Papilloma Expansion Over 7 Years in Aicardi Syndrome Frye RE, Polling JS, Ma LCK. Journal of Child Neurology. 2007; 22(4):484-487
  • Early treatment of Aicardi syndrome with vigabatrin can improve outcome. Chau V, Karvelas G, Jacob P, Carmant L. Neurology. 2004 Nov 9;63(9):1756-7.
  • Facial and physical features of Aicardi syndrome: infants to teenagers. Sutton VR, Hopkins BJ, Eble TN, Gambhir N, Lewis RA, Van den Veyver IB. Am J Med Genet A. 2005 Oct 15;138(3):254-8.
  • Intractable reflex audiogenic seizures in Aicardi syndrome Brain & Development. Grosso S, Farnetani MA, Bernardoni E, Morgese G, Balestri P. 2007; 29:243-246.
  • Microphthalmia and chorioretinal lesions in a girl with an Xp22.2-pter deletion and partial 3p trisomy: clinical observations relevant to Aicardi syndrome gene localization Donnenfield AE, Graham JM Jr., Packer RJ, Aquino R et al. American Journal Med Genetics 1990; 37 (2):182-186
  • Microphthalmia with linear skin defects (MLS), Aicardi, and Goltz syndromes: are they related X-linked dominant male-lethal disorders? Van den Veyver IB. Department of Obstetrics and Gynecology, Baylor College of Medicine, Houston, TX 77030, USA. Cytogenet Genome Res. 2002;99(1-4):289-96.
  • Monozygotic twins discordant for Aicardi syndrome Costa T, Greer W, Rysiecki G, Buncic JR, Ray PN. Department of Genetics, Hospital for Sick Children, Toronto, Ontario, Canada. J Med Genet. 1997 Aug;34(8):688-91.
  • Neuroimaging aspects of Aicardi syndrome Hopkins B, Sutton VR, Lewis RA, Van den Veyver I, Clark G. American Journal of Medical Genetics Part A. 2008; 146A:2871-2878.
  • New Incidence, Prevalence, and Survival of Aicardi Syndrome From 408 Cases New incidence, prevalence, and survival of Aicardi syndrome from 408 cases. Kroner BL, Preiss LR, Ardini M, Gaillard WD. Journal of Child Neurology. 2008; 23(5):531-535.
  • Non-random X chromosome inactivation in Aicardi syndrome Non-random X chromosome inactivation in Aicardi syndrome.Eble TN, Sutton VR, Sangi-Haghpeykar H, Wang X, Jin W, Lewis RA, Fang P, Van den Veyver IB. Hum Genet. 2009 Jan 1.
  • Phenotype and Management of Aicardi Syndrome: New Findings from a Survey of 69 Children Margaret A. K. Glasmacher, V. Reid Sutton, Bobbi Hopkins, Tanya Eble, Richard A. Lewis, Denise Park Parsons, and Ignatia B. Van den Veyver. J. Child Neuro 2007 Feb;22(2):176-184.
  • Presence of filamin in the astrocytic inclusions of Aicardi syndrome. Van den Veyver IB, Panichkul PP, Antalffy BA, Sun Y, Hunter JV, Armstrong DD. Department of Obstetrics and Gynecology, Baylor College of Medicine and Texas Children’s Hospital, Houston, Texas 77030, USA. Pediatr Neurol. 2004 Jan;30(1):7-15.
  • Recent advances in metabolomics in oncology O’Connell TM. LipoScience, Division of Basic Research, Raleigh, NC 27616, USA
  • Role of ocular involvement in the prediction of visual development and clinical prognosis in Aicardi syndrome Menezes AV, Lewis TL, Buncic JR. Department of Ophthalmology, Hospital for Sick Children, Toronto, Canada. Br J Ophthalmol. 1996 Sep;80(9):805-11.
  • Screening of subtle copy number changes in Aicardi syndrome patients with a high resolution X chromosome array-CGH Yilmaz S, Fomtaine H, Brochet K, Gregoire M, Devignes M, Schaff J, Philippe C, Nemos C, McGregor JL, Jonveaux P. European Journal of Medical Genetics. 2007; 50:386-391.
  • Three Choroid Plexus Papillomas in a Patient with Aicardi Syndrome Taggard DA, Menezes AH, Pediatric Neurosurgery 2000;33:219-223.

• Medical

  • HealthCentral.com Trusted, Reliable and Up To Date Health Information.
  • InteliHealth Reviewed by Harvard Medical School faculty members, this site has many useful tools such as the “Symptom Scout”, which tailors advice based on how you answer a series of questions.
  • OMIM Entry for Aicardi Syndrome Online Mendelian Inheritance in Man® listing for Aicardi Syndrome.
  • Quackwatch Your Guide to Quackery, Health Fraud, and Intelligent Decisions Operated by Stephen Barrett, M.D.
  • The Merck Manual: Home Health Handbook Comprehensive medical and health information.

• Organizations

  • American Academy of Family Physicians Preserves and promotes the science and art of family medicine.
  • Epilepsy Foundation The mission of the Epilepsy Foundation is to stop seizures and SUDEP, find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies.
  • First Hand Foundation First Hand Foundation is a nonprofit organization that helps children with health-related needs when insurance and other financial resources have been exhausted.
  • La Sindrome di Aicardi – Il Sito Italiano Aicardi syndrome group in Italy.
  • Mun-H-Center Swedish national orofacial center of expertise — some orofacial information specific to Aicardi syndrome is presented.
  • National Committee for Quality Assurance Health insurance plan rankings.
  • National Organization for Rare Disorders The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.
  • Our-Kids A website devoted to Raising Special Kids with Special Needs.
  • Special Child A Website for Parents and Caregivers of Children with Special Needs.
  • The American Academy of Pediatrics Publications, research, and advocacy from the AAP.