Last week Wednesday Benjamin was admitted to BCCH for a seizure study. Since he has been having new seizures since about April they decided to do this. We got there around 12pm, went upstairs to 3R, figured out that we had to go downstairs to the EEG department where they glued leads on his head (yes, they used actual glue overtop of the paste). We then went back up to 3R where Benjamin went into his bed where he'd spend his time until Friday. That night we had to keep him up till midnight but he decided he wasn't going to sleep since he was so overtired. He was awake until about 2am, dozed until 2:30 and then threw up from exhaustion. He was gagging a lot and I figured he's keep throwing up so I asked for some gravol for him. With that in his system he fell asleep finally at 3am. 5am came bright and early as that was when he had to get up for the day. Gary came to the hospital from the hotel at about 9:30 and I went to the hotel to get some much needed sleep. I slept for about 4 hours and then came back to the hospital. During that time he had about 3 seizures and a bunch of episodes of grinding his teeth. That afternoon the Fellow came to talk to us and said that he thought the seizures weren't actually seizures but that he would get the Doctor to doublecheck. When the night shift nurse came on at 7pm we asked her to check if he had to be sleep deprived on the Thursday night as well. She came back and said he could go to sleep at any time. We were thankful for this since he looked SO exhausted. So he fell asleep at 9pm. I stayed at the hospital since the hotel we were put in seemed a little sketchy to me and I didn't want to sleep there alone. The only thing about sleeping in the hospital is that the lights are fully on in the room since he is on video as well as on continuous EEG. But I just put my cap over my eyes and fell asleep right away. I slept till 6:30 at which point I gave Benjamin his feed since he had to be fully fed by 7am as after that he was only allowed clear fluids as the plan was for him to have an MRI at 1pm. But Benjamin kept sleeping till about 8:30. At around 10:30 that morning we found out that there was an emergency case that needed the MRI slot time at 1pm. So we waited for the doctor to come talk to us. The doctor came only a short time later and explain that the new "seizures" that we had been seeing weren't actually seizures. It is dystonia which is an involuntary muscle disorder. It is still neurological but doesn't cause brain damage if left untreated. But then we found out that one of his medications that he just started on a month and a half ago can help with this. Which explains why the last few weeks we hadn't been seeing many of these movements. The EEG technician came and used some solvent to get the leads off, and then we gave Benjamin a bath and went home. The plan is for Benjamin to still have an MRI in a few weeks but other than that there won't be much change.
We've had the question "Does he still have seizures then?" The answer to this is yes, but they are under control with the first medication he is on. He wasn't taken off that medication during the seizure study as we knew those ones were under control. But these new movements look like seizures so the doctor wanted to make sure that they were. And we found out that they are not.