Meet some of our wonderful children | |
John James: Still Smiling
When JJ was 6 years old, he had extremely low tone and no spontaneous movement. He developed a severe movement disorder known as bilateral ballismus (severe violent movements of his extremities on both sides when he became excited). The movements were so severe that he developed fever, weight loss, and fractured his femur twice. Dr. Darryl De Vivo, director of Pediatric Neurology, at Columbia Presbyterian Medical Center in New York, evaluated JJ. Dr. De Vivo performed a spinal tap for neurotransmitter metabolites, which was sent to Keith Hyland in Texas. After seven years, JJ was finally diagnosed with a dopamine re-uptake disorder. JJ was started on tetrabenazine, which has greatly controlled his movements and has improved his quality of life. He is a handsome young man of 11 with a fabulous smile and a wicked sense of humor. He still has no voluntary movement, extremely low tone, and cannot speak. He is cognitively aware and uses various devices to communicate. JJs parents are the founders of the PND Association.
|
|
© 2003 Pediatric
Neurotransmitter Disease Association
|
www.pndassoc.org
|