View Single Post
Old 08-02-2007, 11:25 AM
Jerri in Boston Jerri in Boston is offline
Junior Member
 
Join Date: Dec 2006
Posts: 15
15 yr Member
Jerri in Boston Jerri in Boston is offline
Junior Member
 
Join Date: Dec 2006
Posts: 15
15 yr Member
Default

If it's anything like what my husband went through in May, here's the scoop.

They will hook your son up with electrodes (glued to his head). These will record his brain activity the entire time he's in the hospital. They will probably have a video of him during his stay.

The doctors will slowly wean him off his meds to help bring seizures on so they can record the information.

It took 5 days before my husband had seizures and they ones he had were horrific to watch. My husband has tonic clonic sz and they are bad enough to witness when he's on meds but when was weaned off, they were 100 times worse! Don't feel guilty if you cannot watch or stay by your son's side during the seizures.

After 3 seizures, I decided to go home. I couldn't take the visual any more. I was a complete wreck mentally and physically.

They recorded 6 seizures. Unfortunately they were unable to pinpoint where his seizures were beginnning. They concluded they were starting much deeper than what the electrodes could pick up being attached to the head.

I pleaded with the nurses that 3 seizures were enough and to start him back on his meds, but the doctors wanted to capture as many as possible. It broke my heart seeing my husband going through so much.

Later that night they started his meds up again. The next day was Saturday and I went to see him. I knew he was in a lot of pain and he couldn't talk. He just sat in the bed quietly sleeping. The following days he got his strength up little by little and started getting stir crazy.

The doctors told us the next step if we wanted to know where his seizures were beginning, they would have to open his head and place electrodes on the brain. We haven't opted for that step yet. He started a new add on - Lyrica, to Tegretol XR and Lamictal.

Good luck and don't knock yourself down if you can't handle the rough stuff during this visit. I was so grateful for the Epilepsy Unit nurses and sitters at Beth Israel here in Boston!
Jerri in Boston is offline   Reply With QuoteReply With Quote