Jimmy's seizures keep getting worse He started having seizures about a year and a half ago, They started on the right side of his face and lasted maybe 10 seconds he had about one a day. Then last spring they suddenly started getting dramatically worse, now the seizures involve his entire body and last a minute or two and can take 2 to 20 minutes to recover from. He has fallen down stairs, dis-located his elbow, sprained his wrist, broken his glasses and acquired many bumps, bruises and scrapes from his seizures. He is currently on 3 seizure medications, none of which work, we have tried many others and, only one seemed to work: he was down to only two seizures a day while he was on it however, It also made him very sick, he lost almost 15 pounds and threw up everyday in the 3 weeks he took it before I had them take him off it.
We are now testing Jimmy to see if they could do surgery to remove the part of his brain his seizures are coming from. He stayed in the hospital for an "Extended Visual EEG" in December. After 3 days and 14 seizures they sent us home 2 days early because they had enough seizures recorded. The only thing that they could tell us from that testing was that the seizures were originating from the left side of his head, *ugh* . Thanks, but we already knew that! A couple of weeks ago we did a MEG (Magnetoencephalography). we had to keep Jim up all night the evening before the test. He was really excited to pull his first "all-nighter" about 1am he decided staying up all night wasn't that fun after all and by the time we got there for the testing he was very angry with me for keeping him awake. They took about an hour getting him ready for the test and he kept falling asleep sitting up while they were gluing electrodes to his head. He did sleep just fine during the test, I still feel a little sleep deprived though. The results from his MEG showed "lots and lots and lots and lots" (the doctors words) of excess electrical activity and that there are two separate places in his brain that are causing the seizures, so there are 2 parts that they would have to remove to stop the seizures, but surgery looks "somewhat promising" our next step is to get a bunch of neurologists, neurosurgeons, and other fancy titled doctors together to look over all his information to see what they they think our next step should be. It could take months to get all those doctors together for a meeting. so for now we Just wait and wait and wait....
Sunday, February 6, 2011
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Oh, Melody ~ I feel for you and Jimmy!
When I see the words, "somewhat promising," I want to scream. It just doesn't sound good enough! When Jordan broke his arm, the doctor said the surgery with the rod was "adequate." We got another opinion and the team decided to re-operate and use a plate and screws to put his arm back together.
You and Marty want what's best for Jimmy. Don't settle for anything less. I do hope you get some more answers/results that are more promising.
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