Monday, July 30, 2012

What is Dandy-Walker Syndrome?

 Dandy-Walker syndrome is a condition that affects brain development, primarily development of the part of the brain that coordinates movement (the cerebellum). In individuals with this condition, various parts of the cerebellum develop abnormally, resulting in malformations that can be observed with medical imaging. The central part of the cerebellum, known as the vermis, is absent or very small. Cysts form in the fourth ventricle, which is a fluid-filled cavity between the brainstem and the cerebellum, causing the ventricle to enlarge. The part of the skull that contains the cerebellum and the brainstem, called the posterior fossa, is abnormally large. These abnormalities often result in problems with movement, coordination, intellect, and other neurological functions.


In 80 to 90 percent of individuals with Dandy-Walker syndrome, signs and symptoms caused by abnormal brain development appear within the first year of life. Most children have a buildup of fluid in the brain (hydrocephalus) that causes increased head size (macrocephaly). Affected individuals typically have intellectual disability that ranges from mild to severe, although some have a normal intellect. Children with Dandy-Walker syndrome often have delayed development, particularly a delay in motor skills such as crawling, walking, and coordinating movements. People with Dandy-Walker syndrome frequently experience muscle stiffness and paralysis of the lower limbs (spastic paraplegia), and they may also have seizures. Hearing and vision problems are sometimes a feature of this condition.


Monday, July 2, 2012

Costs of Healthcare

The Cost Conundrum

What a Texas town can teach us about health care.

by June 1, 2009

Costlier care is often worse care. Photograph by Phillip Toledano.
Costlier care is often worse care. Photograph by Phillip Toledano.
It is spring in McAllen, Texas. The morning sun is warm. The streets are lined with palm trees and pickup trucks. McAllen is in Hidalgo County, which has the lowest household income in the country, but it’s a border town, and a thriving foreign-trade zone has kept the unemployment rate below ten per cent. McAllen calls itself the Square Dance Capital of the World. “Lonesome Dove” was set around here.
McAllen has another distinction, too: it is one of the most expensive health-care markets in the country. Only Miami—which has much higher labor and living costs—spends more per person on health care. In 2006, Medicare spent fifteen thousand dollars per enrollee here, almost twice the national average. The income per capita is twelve thousand dollars. In other words, Medicare spends three thousand dollars more per person here than the average person earns.

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Ideas for Traveling with a Special Needs Child

by Jamie Barnes from Complex Child Emagazine

It seems daunting--the idea of travel with a child who is medically complex. It can be an amazing opportunity for the whole family if your child can handle it! There is a lot of planning but it doesn’t all have to be last minute. Part of the planning process is just thinking things through. I had a notepad and pen on my nightstand to jot down the thoughts, ideas and to-do’s as I came up with them while drifting off to sleep. The other part of planning is working with medical providers on emergency plans, which may include ordering additional supplies/pieces of equipment not normally used.

A little background on the complexities we are dealing with: my son Hayden is six years old, is a fraternal quadruplet, and has an undiagnosed syndrome with the major symptom of cerebral atrophy. Hayden deals with multiple GI issues, including intestinal pseudo-obstruction and Morgagni hernia. He also frequently gets respiratory infections with monthly pneumonias. Hayden has pages of diagnoses, but to sum it up he has multiple and severe disabilities, uses a wheelchair and needs full support. Hayden has a G-tube for decompression and draining as well as a central line for nutrition and medications.