If you haven't yet, you can read about our very first EEG HERE.
We have been noticing Oaklynn doing some things that seem like seizure activity. She has little twitches and sometimes has her tongue hanging out and rapid eye blinking. She has been doing this for some time. We had an appointment with our Geneticist a few weeks ago and I told her about them and she said she was going to contact our neurologist to tell her about them. A few days later, I got a call from the nurse that works with our neurologist. She asked me to explain what I was seeing from Oaklynn. I told her about it and she said she would talk to our neurologist and call us back. About a week later I got a call from the hospital telling me that our neurologist is wanting us to go in for a 48 hour EEG ASAP but they were booked until February. She said that it would be a last minute appointment where someone doesn't show up and so they will call and ask me to be there in a couple hours. I told her we would make that work. Well, I got a call on Friday 12/7/12 and they said that they have had 2 cancellations on Monday and offered us a spot and we took it!
Austin, Oaklynn, and I checked into the hospital at 9:30am. We went up to the epilepsy floor and they walked us to our room. They then explained what was going to happen . . .
[ They were going to put electrodes all over Oaklynn's head and then wrap it up in gauze so that she couldn't pull them off. There was a camera in the room so they could also watch her the whole time. If Oaklynn started having one of her "episodes" that we see at home, we were to push a button. When the button is pushed, the TV goes off, all the lights in the room come on, all of our nurses (and a couple more) get paged and a light outside our door starts flashing and beeping. They said that when we push the button, it marks on the EEG that the button was pushed. The neurologist will look over the whole EEG, but will pay extra attention to where the button was pushed and watch what she was doing at that time. They also gave me a log to write down any time I saw something different that I had questions about.]
They then started putting the electrodes on Oaklynn's head. She did SO GOOD until about half way through. They then had to hold her head down and in place so she didn't move at all. If she moved too much, she would remove the electrodes that were just placed on her head. She did not like being held down.
Then they wrapped her head up in gauze. She was still prett happy despite she had a hard time seeing. The gauze was so tight that it pulled her whole face in. So her cheeks were huge and her eyebrows were pushed down and made her eyes squinty. He is too cute . . .
Watching Mickey Mouse Clubhouse with Daddy . . .
Here is a video I took of Oaklynn. We were trying to get her to lay down and go to sleep but she didn't want to. In the video, she does a couple of full sit ups (her PT, Beth, will be so proud)! Although I wanted her to lay down and sleep, I was so proud of her for doing sit ups. She is also "talking" quite a bit in the video . . .
Here is the monitor. This is in our room so we can see what they are seeing. Behind the picture of Oaklynn are her brain waves. I could see some of it but not all that they see . . .
I had to put her arm braces on so that she wouldn't pull the electrodes off. Finally she fell asleep . . .
I brought my laptop so that I could work on Vinyl orders from customers while I was there. This was my work space . . .
When she fell asleep, I took the braces off. She has a hard time sleeping with them on . . .
The lights have to be on at all times so they can see her on the camera. She slept pretty good at night but awoke a couple times very suddenly. I also noticed that she snores a little. I never knew that because I don't usually sleep in the same room as her. I noticed her twitching a lot and rolling around and I was concerned about it so I wrote it in the log. I walked over to the monitor where I could see her brain waves and noticed that the people who were watching her on the camera were watching her very closely at that time. I saw them zooming in on her and moving the camera around. Her "episode" lasted about 8 minutes. I called the nurses in to let me know that they could do vitals and such (because I asked them to please not bother us while she was sleeping since sleep is hard for her to get to sleep and I would let them know when she woke up). When they came in, they said that they had been watching her and talked to me about seizures. It sounded to me like they thought she may have just experienced one but they never said that. Once they left, about 15 minutes later, I pushed the "seizure button" because I saw her start to do her twitching and tongue out stuff that I was questioning. They all came in and watched her for a little bit, listened to her and then left.
In the morning, the neurologist came in and discussed the results with us. He said that there were no seizures happening while we were there. He said that we could stay for the full 48 hours, or we could go home but it was completly up to us as it was not a prison and we could choose what we wanted to do. I called Austin to talk to him about it and we decided to go ahead and go home. She did everything we normally see and felt like we got our answers.
She does have problems sleeping and the neurologist (who works closely with sleep problems) mentioned getting a sleep study done to see what could be causing that. We have discussed it but have not decided weather to do it or not. If we do, it will be after the craziness from the holidays wears down.
Here is a pic of Oaklynn after they took the electrodes off, ready to go home . . .
Look at her eyes. Poor girl is EXHAUSTED!!