My son is 23 months old and has been fighting a condition just recently diagnosed as "dancing eye syndrome". I am trying to research on this rare disorder as he has been fighting this since 9/06 and at that time he was diagnosed as having Post Infectious Cerebellitis. I knew that something else was wrong and I was constantly calling the Pediatric Neurologist who diagnosed him with my complaints and concerns that Jymani was in fact regressing and not getting any better.
Jymani woke up on September 19th very unbalanced and falling after almost every step. His head seemed to be very unsteady and he was shaking at times as if he was having a seizure. I rushed him to our local ER where they were very confused and referred us to UW Hospital and Clinics in Madison where Jymani saw a Pediatric Neurologist who almost immediatley diagnosed Jymani with Post Infectious Cerebellitis. I was told Jymani's condition wold begin to get better within 7 to 10 days. This in fact was not the case as Jymani's conditions worsened. Jymani was up all night crying with a constant need to be held. He had slight tremors throughout the day and night and had great difficulty holdig his head up. After CT scans, EEG's, and an MRI I was still told that Jyamni's diagnosis was correct.
On Wednesday, December 6, 2006 I took Jymani to Childrens Hospital with a very elavated temp and conditions worsening. I was not comfortable calling the Pediatric Neurologist who diagnosed him, so I decided a trip to the ER was well worth it. After extensive testing and being admitted it has been found that Jymani suffers from OPSOCLONUS MYOCLONUS ATAXIA ENCEPHALOPATHY. If anyone knows more of this rare disorder please help. Jymani is still in the hospital.