Tuesday, November 27

New drug and another EEG

We went to see his epileptologist yesterday. We like him, inspite of the fact that we haven’t been able to stop seizures. He asked some questions, and then told us the best thing to do is to combine two medications. He had been taking valproat in the beginning but since it didn’t work we switched to keppra and now it will be both keppra and zonegran. In a month and half my husband needs to stay awake for a whole night and go to the hospital for an electroencephalogram to see how his brain responds to sleep deprivation and irritation. If I understood correctly, once there they’ll let him fall asleep and wake him up shortly after (how rude). So far, his brain seems perfect according to MRI, scans and such. We just don’t get why at this point in his life he has seizures and how come we follow this two month pattern... Before he had any seizures, and since he was 14 or 15, my husband remembers that he would suddenly jerk his arm without having control over it. Since this only happened once or twice a year, he hadn’t really thought it was important. The doctor did, though. He said it was a myoclonic jerk and it was clearly a sign of juvenile myoclonic epilepsy but now he’s not so sure because he explained that most (80%) JME respond well to valproat and seem to be fairly easy to control, but not his epilepsy. Maybe, just maybe, it’s another type. We’ll see... Thanks for listening. This must be a boring read. My eldest daughter was kind of scared on Sunday. When she saw her father arrive home she smiled, but she came closer to me also and took my hand...
Also, I’m sorry if I don’t comment on your blogs people, it’s kind of rude not to show up when you’re being so nice!!! I’ll do better... Today we’re going to France again to see Mystery doctor. He’s not so mysterious and not a doctor, but I still call him that ;-)

2 comments:

Wayfaring Wanderer said...

Educated guesses can give us hope at least.......Hang in there Nuri! I'll be thinking about you all.

James Shott said...

Your posts are not boring, Nuri. They give us the chance to know you and what goes on in your life.

And, following this medical puzzle-solving is quite interesting to me.

You know you have the support of us long-distance friends.