Sunday, February 6, 2011

Jimmy's Seizure update...

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....

Saturday, February 5, 2011

Letting your kid be a kid

I let Jimmy ride his scooter today, I made sure he wore his helmet and then I stood there and watched him zoom up and down the street with fear squeezing my heart, I was so worried he would have a seizure and end up face down sliding across the rough asphalt. But he had so much fun. Jimmy got his scooter a year ago for his birthday, I figured it was safer than a bike for a kid who was legally blind. He loved his scooter, he rode it every single day and then the seizures got worse, they went from being just on half his face for a few seconds each day to his whole body being involved 5 to 7 times a day. So I quietly put the scooter away. He asked me yesterday if he had enough money saved to buy a scooter and so I told him we still had his.

Yes, it would break my heart to see him hurt himself again when he has a seizure, but, it also hurts to tell him he can't be a kid and do all the stuff a kid wants to do. Where does a mom draw the line between trying to keep her kid safe and letting him live as much a life as possible. Yes, I have nightmares about him having a seizure and seriously hurting himself or worse. But, I also don't want him growing up without a childhood or with anxiety, constantly worrying about hurting himself. So I continue to walk the line and worry about if I'm doing the right thing.