HIS STORY

November 10, 2006 at 10:37 PM EST 

Our Jonathan was a healthy child. He enjoyed life as much as he could until just after his second birthday. He's now 2 1/2. He has been diagnosed with viral encephalitis and resultant neurological devastation since May 2006. After overcoming a gastroenteritis (stomach virus), he had focal neural changes (brain wave changes) including left sided weakness and ataxic gait (abnormal walking). These symptoms progressed until he developed seizures, stopped ambulating, verbalizing, eating by mouth, and purposely interacting with his environment. Currently, Jonathan is non-verbal with occasional non-purposeful vocalizations, and he continues to experience seizures. He has a range of awake and calm and awake and agitated states throughout the day. He has significant choreathetoid (continual , non purposeful) movements of all four extremities which increase during an agitated period. In these moments of agitation and movement, it is extremely difficult to calm him and manage his body as he is constantly moving. At this time, it does not appear that Jonathan has movements that are purposeful with regards to activities of daily living or interactions with others. He also has a G-tube for nutrition. Jonathan has an intense daily medical regimen that most importantly involves managing his seizures. Not only does he take Keppra, Topimax, and Phenobarbital to control the seizures, he is also on the ketogenic diet. This diet is a strict ratio of fats to carbohydrates that has been shown to decrease seizure activity. The diet is carefully measured and administered via his G-tube so that it maintains his nutrition and treats his seizures. The ketogenic diet also includes monitoring his blood sugar and blood ketones weekly to ensure that his blood sugar is not too low and that he is in ketosis. Jonathan also takes medication around the clock to help with the periods of agitation, including pentobarbital and valium. He also has a history of reflux, constipation, decreased bicarb (due to the ketogenic diet) and multiple allergies all for which he is treated with medication via the G-tube. Besides the medical component to Jonathan's regimen, he also requires multiple therapies and interventions to continue his rehabilitation. Jonathan's most recent CAT scan (Nov 2, 06) revealed severe and progressing degradation of brain tissue across the entire cerebral cortex. Far more than would normally be expected 6 months post infection. The rate of degradation is increasing despite the absence of white blood cells. Of note is the complete sparing of the cerebellum and spinal cord to injury of any kind. His prior MRI was July 06. The prognosis seems to be 1-16 mo.