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Showing posts with the label NIH

Pushy Parents

Proud to be a pushy parent....maybe, just maybe...once a diagnosis is found....we can do something to help others....or maybe we will become a WISER pushy parent...
Too Rare for Research?  People with rare diseases often experience significant delays in diagnosis and access to few, if any, treatment options. Paturel, Amy M.S., M.P.H. Neurology Now: April-May 2012 - Volume 8 - Issue 2 - p. 29-33 doi: 10.1097/01.NNN.0000414217.98072.84 Features: Rare Disease
An estimated 6,000 to 7,000 rare diseases -- many of them neurological -- collectively impact nearly 25 million Americans. People with rare diseases often face greater difficulties than people with common diseases in locating experts, receiving an accurate diagnosis, and finding treatment options. Here, we explore the ways that people with rare diseases are pushing for more research and better treatments.
When Jon Soeby snipped his newborn son's umbilical cord, baby CJ grunted. Astonished, the doctor joked that CJ was already tryi…

Cerebral Palsy vs Pediatric Neurotransmitter Disease

According to NIH
The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time. Even though cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves. It is caused by abnormalities in parts of the brain that control muscle movements. The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later. The early signs of cerebral palsy usually appear before a child reaches 3 years of age. The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait; and muscle tone that is either too stiff or too floppy.

According to PND Association
“Pediatric Neurotransmitter D…