Rasmussen's Encephalitis

02/20/2008

This morning, Jessie's case was reviewed with the 20 or so Neurologist team at Cooks Children's Hospital in Fort Worth, Texas. They were in agreement that Jessie's clinical picture was consistent with Rasmussen's Encephalitis (RE). http://www.ninds.nih.gov/disorders/rasmussen/rasmussen.htm

They believe that she is in Stage III of RE.

The NeuroPsycologist believes that she is showing signs of cognitive impairment and the physical impairment is obvious.

We have noticed that she has a harder time finding words these days.

The PET scan shows reds and yellows on the left side (good sugar uptake), while the back-half of the right side shows blues and greens indicating poor sugar uptake. The MRI shows that the folds are widening which indicates atrophy.

The Neurologist Team recommends a Right Hemispherectomy (Removal of the entire right half of Jessie's Brain). They believe that it needs to be done urgently in weeks and not months.

Kristi and I, and the Neurology team believe that we need to go to the experts on this disease at Johns Hopkins in Baltimore, Marland for a second opinion.

http://jessiekelley.blogspot.com/