Isabellas neurologist called yesterday, he wants her to do another hospital stay for another EEG (EEG- seizure test where they glue a ton of electrodes to your head to watch your brainwaves). The neurologist explained that he thinks that her EEG may have evolved into something called Electrical Status Epilepticus of Sleep, or ESES. ESES is basically your brain is having continuous seizures people dont see on the outside, and the constant seizure activity is hell on your system, and it destroys your cognitive functioning. In the past her EEGs have been a mess, and we know that she has a lot of sleep activation- a fancy way of saying her brainwaves/sub-clinical seizures get much nastier when she is asleep. Most of you know that Isabella has lost a lot of ground cognitively, and the changes in her personality and day-to-day functioning have also been pretty drastic. While ESES would be an ugly diagnosis to add to the mix, it does offer some treatment avenues that might help her. Having treatment that might work puts her better off than we are right now. Right now we have nothing. So think good thoughts for her, she is not a fan of being hospitalized. I am not sure when we will do the hospital admission, but it sounds like it is something we need to do sooner rather than later. Her birdies will be in good hands here at home, so that is a relief and will make the hospitalization easier for both of us.
Posted on: Thu, 01 Jan 2015 17:32:17 +0000