Children with Disabilities, Fifth Edition
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Position statement from the American Academy of Pediatrics on folic acid for the prevention of neural tube defects (NTDs).

“Preventing Neural Tube Defects.” A prevention model and resource guide with information about NTDs, folic acid, community involvement, program development, examples of program development, a glossary, and more.

Spina bifida fact sheet from National Information Center for Children and Youth with Disabilities (NICHCY).

“Discovering Spina Bifida Webring.” A place for parents and families of children with spina bifida to share their stories and advice.

Definition, types, incidence, characteristics, educational implications, and a list of organizations related to spina bifida.

“DD InSite.” The technology and developmental disability resource for the state of Georgia. Includes information and links about spina bifida, including a definition; how spina bifida affects cognition, coordination/manipulation, and mobility; links to helpful assistive devices and other resources; and addresses of organizations.

Specific information about spina bifida occulta, including pathophysiology, symptoms, signs, associated serious conditions, information on radiology, and references, as well as links to information therein.

Specific information on spina bifida, including a list called “Help for Leaders,” about communicating, helping, and living with children who have spina bifida.

“Tethered cord syndrome and occult spinal dysraphism.” PDF file of an article from Neurosurgical Focus (Vol. 10, Iss. 1, 2001).

Information about tethered spinal cord, including surgery, postoperative follow-up, and links to web sites with additional information.

Discusses urinary tract concerns in people with spina bifida.

Covers urinary incontinence in children.

Chiari malformation information page with description, treatment, prognosis, research, and organizations.

Details of The Spina Bifida Assessment of Neurobehavioral Development International (SANDI) Project, with information on spina bifida, hydrocephalus, Chiari malformation, genetics, life with spina bifida, coping, and other resources.

“Spina Bifida: Managing Bowel Dysfunction in the School-Aged Child.” An article from the Summer 1997 issue of See/Hear.

“Welcoming Babies with Spina Bifida: A Message of Hope and Support for New and Expecting Parents.” A supportive message for parents, plus information about organizations, recommended reading, and online information and support resources.

Information on mobility, skin sensation, and latex allergy with spina bifida. From SBH Queensland, an Australian organization providing services to people with spina bifida, hydrocephalus, and other neural tube defects.

Information on latex allergy, from the Oregon Health Sciences University.

Educating the student with spina bifida and hydrocephalus.

Fact sheet about kyphosis with links to information about scoliosis in children and adolescents.

Information about scoliosis (and other spine-related injuries, diseases, and malformations) including a description of how to recognize scoliosis and links to more information.

Information about neuromuscular scoliosis as it relates to neurological diseases such as spina bifida. Graphic shows an X-ray example.

Avoiding/preventing pressure sores related to spina bifida.

“Let’s Talk About Sex!” and “More Talk About Sex!” Informational leaflets (in PDF format) for adolescents with spina bifida or hydrocephalus.

“Precocious Puberty in Children who have Spina Bifida with Hydrocephalus.” A paper (in PDF format) by Gregory S. Liptak, M.D.



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