Epilepsy Diary

Today, we visited with Dr. White and got the results of Stacy’s QEEG (brain mapping). As Dr. White put it, “not good!”. Stacy was exhibiting way too much delta and theta activity and not enough alpha and beta. The theta activity is centered above the thalamus. Dr. White said she really didn’t understand how Stacy was even functioning because her brain activity was so far out of whack.

The good news is that Stacy has not exhibited any seizure activity since her status cluster that sent her to the hospital at the beginning of the month.

She started regular neurofeedback sessions a couple of weeks ago to hopefully normalize her brain wave activity. She has upped her Dilantin intake to alternating doses of 300mg/400mg daily and it appears to have controlled the infrequent jerks/partial seizures that she tended to have just before her period. She started her period today and we are hopeful that she will avoid any more TC clusters (the last few occurred around her period).

Well, Stacy aspirated on her vomit (on the ambulance or in the ER – it’s not clear to me when it happened) and had to stay in the hospital overnight with tubes in her nose and mouth sucking fluid out of her lungs and stomach. She is recovering at home now and not in danger of contracting pneumonia.

Mentally, she is really tired of having seizures and a bit depressed/bummed out about the latest episode. She does, however, remember everything she was conscious for and is able to think clearly.

They pumped her sky high with the Cerebrex/phenytoin at the hospital, so she was suffering from a bit of “Dilantin toxicity”, but that is abating now and she is feeling better. The hospital neuro recommended she start taking 400mg Dilantin every other day (alternating with the 300mg Dilantin she was taking). She is definitely going to do that.

We also called Dr. White’s office to see if she could start neurofeedback again (she stopped some time ago because the technician they had quit to resume graduate school). They have a new trained/certified technician and we went today to get an initial “stabilization” session in. The tech said that Stacy responded really fast to the system today.

She is scheduled for a QEEG tomorrow to set a baseline for where she is at right now and chart a course for the neurofeedback sessions to come.