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Dandy-Walker syndrome

Dandy-Walker syndrome is a congenital brain malformation involving the cerebellum and the fluid filled spaces around it. The key features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis (the area between the two cerebellar hemispheres) and cyst formation near the internal base of the skull. An increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present. The syndrome can appear dramatically or develop unnoticed. more...

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Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. In older children, symptoms of increased intracranial pressure such as irritability, vomiting and convulsions and signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination or jerky movements of the eyes may occur. Other symptoms include increased head circumference, bulging at the back of the skull, problems with the nerves that control the eyes, face and neck, and abnormal breathing patterns. Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system including absence of the corpus callosum (the connecting area between the two cerebral hemispheres, and malformations of the heart, face, limbs, fingers and toes.

Treatment

Treatment for individuals with Dandy-Walker Syndrome generally consists of treating the associated problems, if needed. A special tube to reduce intracranial pressure may be placed inside the skull to control swelling. Parents of children with Dandy Walker Syndrome may benefit from genetic counseling if they intend to have more children.

Prognosis

Children with Dandy-Walker Syndrome may never have normal intellectual development, even when the hydrocephalus is treated early and correctly. Longevity depends on the severity of the syndrome and associated malformations. The presence of multiple congenital defects may shorten life span.

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Kansas statute empowers guardians, conservators
From Topeka Capital-Journal, The, 9/28/03 by Jan Biles Capital-Journal

By Jan Biles

THE CAPITAL-JOURNAL

Topeka attorney Margo Burson says Kansas is "forward thinking" when it comes to statutes that protect the rights of individuals with disabilities.

And she should know.

She has been guardian and conservator for her uncle Russell for 19 years. Russell has Dandy-Walker syndrome, a congenital brain malformation that results in motor imbalance, coordination problems and difficulties in learning.

"When I was 13 or 14, I figured out I was next in line (to care for my uncle)," Burson said, adding that her mother took care of Russell until December 1984, when she assumed the responsibility.

Burson said a Kansas statute protecting the rights of those with disabilities has been in effect for at least 38 years. Among its provisions, the statute permits a guardian and conservator to be appointed for an individual with diminished intellectual abilities.

Updates to the statute, most recently in July 2002, allow guardians and conservators to be designated for minors with disabilities who will have a continuing need for assistance when they reach adulthood.

"Previously, (the statute said) you cannot do a guardian/ conservatorship until they turned 18," she said. "They prefer people to wait until age 18 because the duties and powers of a natural parent are more than those of a guardian/conservator."

At age 18, every individual, unless a guardian or conservator has been appointed, has the legal right to make his or her own choices.

A guardian takes on a caretaking role and is responsible for "the health, education, safety, housing, social and physical self of the individual," she said.

However, guardians are restricted from making some decisions, such as:

- Authorizing end-of-life medical treatment, such as do not resuscitate orders, without court approval.

- Consenting to sterilization, amputation or surgery for the individual without court approval.

- Prohibiting the individual's marriage or divorce.

Burson said a conservator is a "money management job" involving the individual's expenses, estate, cash, property and other assets.

"As a conservator, I have the annual obligation to report to the court and share that (financial) information with other family members," she explained.

Burson's uncle Russell, 72, lives in a Shelter Living group home. He has trouble with his balance but can move about using a walker and gait belt. Two and a half years ago, he started participating in the senior services program at TARC, an agency that provides services to those with intellectual and other disabilities. Burson has been a member of TARC's board of directors for 16 years.

"My role is to provide a safety net, not to be a 24-hour provider," Burson said, explaining that she is involved in program planning, quality assurance and medical care and financial decisions.

"A person is a guardian until another is appointed. It's not a job choice like being a social worker or counselor. I have a moral and family obligation. It's not just a job for me."

Jan Biles can be reached at 295-1292 or jan.biles@cjonline.com.

Copyright 2003
Provided by ProQuest Information and Learning Company. All rights Reserved.

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