About Dandy Walker:
Dandy Walker is known by many names: Dandy Walker Syndrome, Dandy Walker Malformation, Dandy Walker Cyst, Dandy Walker Variant.
By definition, Dandy Walker is a congenital brain malformation typically characterized by incomplete formation of the cerebellar vermis, dilation of the fourth ventricle, and enlargement of the posterior fossa. In layman's terms, Dandy Walker is a cyst in the cerebellum (typically symmetrical) that is involved with the fourth ventricle. This may interfere with the body's ability to drain cerebrospinal fluid from the brain, resulting in hydrocephalus.
Dandy Walker cysts are formed during early embryonic development, while the brain forms. The cyst in the cerebellum typically has several blood vessels running through it connecting to the brain, thereby prohibiting surgical removal. In most cases the cause of Dandy Walker is not known, though there are a few known cases resulting from autosomal recessive genes.
Dandy Walker is generally discovered before birth, by ultrasound. Symptoms in the newborn may include a bulge or lump on the back of the head ("bulging occiput"); a "hair collar", or patch of long hair just above this lump; red pigmented skin in the area of the lump (similar to a "stork bite" birthmark); increased head circumference (if hydrocephalus is present); a downward gaze (if hydrocephalus is present). Other symptoms of the syndrome can also include congenital heart problems; malformations of the face, fingers, or toes; other central nervous system structural anomalies (often agenesis of the corpus callosum); abnormal breathing patterns; motor delays; hypotonia; learning problems; mental retardation; high pain tolerance; seizures; reflux; nystagmus (jerky eyes); ataxia; and other complications.
There is an extreme range of severity with Dandy Walker. Some people have it their whole lives without any symptoms ever presenting; some infants may have it in association with other syndromes resulting in severe complications or death.
It is difficult to find information about Dandy Walker on the internet. The list that follows includes sources we have found, along with the names and addresses of hydrocephalus organizations that may be able to offer more information.
*** Dandy Walker Support Group *** Click on "Find a List", then type "Dandy Walker" & join!! This is the place to GET ANSWERS!! Members range in age from parents of infants with DW to succussful adults with the disease. Check out the archives.
* The National Organization for Rare Disorders, Inc. (NORD)
* Beth Israel Institute of Neurology & Neurosurgery
* Pedbase (Pediatric Database)
* MSU
* 
Spina Bifida Association Information on Hydrocephalus and Encephaloceles
* Family Village: Resources for People Interested in Spina Bifida and Related Disorders
* Chiari Malformation Website
* IRSC Internet Resources for Special Children
* Dandy Walker Support Group
Dandy-Walker Syndrome Network,
5030 142nd Path West,
Apple Valley, MN 55124,
Phone: (612) 423-4008, Contact: Desiree Fleming
Hydrocephalus Association,
870 Market Street,
Suite 955,
San Francisco, CA 94102
Guardians of Hydrocaphalus Research Foundation,
2618 Avenue Z,
Brooklyn, NY 11235,
(800) 458-8655,
(718) 743-4473
March of Dimes Birth Defects Foundation,
1275 Mamaroneck Avenue,
White Plains, NY 10605,
(914) 428-7100
Our Story:
Our daughter, Amanda, was born on August 25, 1995. During a physical shortly after her birth, a lump was discovered on the back of her head. Five days later, a CT scan showed that the lump was connected to her brain, and is a neural tube defect - an encephalocele, meaning Amanda has Spina Bifida at the cervical level. The CT scan also showed a large cyst in her cerebellum, which is a Dandy-Walker variant. An MRI confirmed the diagnosis. Amanda had surgery at 3 months of age to remove the encephalocele, and the cyst in her cerebellum remains unchanged.
Amanda also had eczema at birth, a high arched palate, and small sinus cavities. Since surgery, she has presented with reflux and hypotonia (low muscle tone). She does not have hydrocephalus. Amanda is involved in an Early Intervention program and currently receives physical therapy, occupational therapy, speech therapy, special ed, and is seen regularly by a nutritionist. Amanda can sit up by herself (1/98!) unassisted, pull herself to standing, and is starting to cruise (10/97). Amanda began crawling in April of '98, at the age of 32 months. Amanda has Supra-Malleolar Orthotics (SMOs) to help support her ankles while using her walker. She has a vocabulary of about two dozen words, and is very adept at communicating using a combination of sign language (Signed English) and gestures. She feeds herself and drinks from a cup. She is very smart, sweet, and determined. As of July '97 she no longer requires reflux medication, and as of September '97 she is on the height and weight charts at the 15th percentile.
As of June, 1999, Amanda has successfully completed her first year in center-based preschool. She has made many advances: she stands, cruises, crawls, talks, sings, and has taken up to SEVEN steps unassisted!
Amanda entered a blended kindergarten class, September 2000. She has a full day of school, and continues with Speech, OT, and PT at school. She started *officially* walking independently April 2000 !!! at age 4 1/2. Recently, (October 2000) Amanda ran several steps all by herself and jumped into a pile of leaves. She is a wonderful, independent, determined child who wants Santa to bring her a piano and has joined the Brownie Girl Scouts. She loves camping and canoeing, singing and watching videos. Amanda continues to improve in her speech, balance, and coordination.
This page is a result of our search for information about Dandy Walker. Our search is ongoing, and this page will be updated frequently. We are not medical professionals, we are parents who had trouble finding information when we desperately needed it. We hope other parents will find this information helpful.
Amanda (photo 8/97, 2nd Birthday)
Fall 2000, age 5
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