I have really been slacking on the blog lately. It has been a little busy here. I am a procrastinator. Last week I realized that Christmas was one week away. YIKES! So the blog fell by the wayside, while I got some things done. Now that my crisis has been averted, I figured I should give an update on the video EEG. I have to warn you, this is going to be a long post.
Before the test, I called the hospital to get some details. I was told that Emily was going to have to stay in bed for the entire test. I was told that they would provide a feeding pump, we just needed to bring Emily's tubing that hooked up to her g-tube. I was told to go to the hospital at 12:30 and we might be checked into our room by 2. Wednesday morning, we received a phone call from the hospital. We were told that they were full and they would call back when it was time for us to come. We were so thankful for that! We were not looking forward to sitting in the waiting room for 2 hours (the waiting room for tests is right next to the waiting room for the ER so we were not thrilled about exposing Emily to all kinds of germs).
We received the call and arrived at the hospital around 2 pm. As soon as we got to the room, I got Emily into her PJ's and got her in bed. Then the EEG tech came in and started putting the electrodes on Emily's head (there were between 26 and 28). With all the hair that Emily has, you know she had to use a LOT of goop! Once she was done sticking all the electrodes on, she wrapped Emily's head with 2 rolls of gauze. And then taped it all on. She had this big white cap on her head with wires sticking out the top like a ponytail. It was quite a sight to behold!
Emily did pretty well with the whole ordeal. I don't think she was excited about the contraption on her head, but she did not complain about having the electrodes attached. While this was going on, Mike and I were talking to the doctors and nurses. It seemed like every person that walked in the door asked us the same question. We wondered how many times we were going to have to list Emily's medications. We also tried to explain some of the behavior we had seen in Emily that we were concerned about. Every doctor asked us how many seizures Emily was having a day and we could not answer that. There are so many odd little things that she does and we aren't sure if they are seizures. That was the whole point of the test - so we could find out once and for all if these "episodes" were seizures.
Mike left to pick up a prescription for himself (he had a sinus infection at the time) and to get some food. The nurse came in and put a pulse ox monitor on Emily's toe and told me that she would have to get an IV. They wanted to be able to give her meds quick if she were to have a bad seizure. Well, Emily is not an easy stick and I hate needles. So I was pretty nervous. Normally I would let Mike handle it, but that was not an option. When the two ladies arrived they quickly got to work moving the crib bumper out of the way so they could have easy access to Emily's arm. When they moved it to the bottom of the bed, the bumper went over Emily's head and she started to giggle. Needless to say, the ladies thought that was adorable. I figured the giggles would soon be replaced by crying when she figured out why they were there. I was wrong. They were able to get the IV on the first try. She whined a little bit when they stuck her, but was great otherwise. I was so relieved!
The EEG tech gave me instructions about pushing a button if I saw any seizures and gave me a journal to record what I saw. I was supposed to write down the time and mark her behavior (body jerks, irritable, eyes open or closed, etc.). She also told me where the cameras were and that I should do my best not to block them (easier said than done!). Well it wasn't long before I was pushing the button. I basically pushed it any time I saw Emily jerk or twitch. The hard part about being there by myself for a few hours was I could not sit down. There was a chair and couch in the room, but Emily was in a crib that was really high surrounded by a bumper. I could not see her if I sat down, so I had to stand guard at her crib the whole time. Poor Emily looked like she was in a cage.
Mike returned and we ate some dinner. He helped me to keep an eye on Emily and we both noticed some odd behavior. Around bed time, we hooked Emily up to the pump, turned off the TV and most of the lights and hoped that she would go to sleep. Not a chance! She cried for a while. She would go back and forth between a whine and full blown cry. I was getting so frustrated that I could not comfort her (I could barely reach her in the crib). Plus I could only go to her on one side of the crib - the side where she had her IV so I couldn't even hold her hand. To add to the frustration, Emily kept setting off the alarm on the pulse ox monitor. So every few minutes a nurse would come over the intercom to ask if we were OK. That was not helping us to get Emily to sleep. Finally Mike told the nurse that we would call her if we needed her.
After a while, I asked the tech if I could pick Emily up and hold her in the chair. She said that was fine she would move the camera (the nighttime tech was WONDERFUL!). Once we got her out of bed and situated on my lap, she calmed down pretty quickly.
While she was on my lap, the tech did a strobe light test on her. I didn't notice any reactions to the strobe light.
The rest of the night is a blur. Emily didn't sleep very much and neither did we. We took turns holding her in the chair. She slept for a few hours here and a few hours there. We did the same. I don't think I have to tell you what sleep deprivation, stress and frustration can do to a person. We were snapping at each other, getting frustrated with the nurses and just plain cranky! Good times!
At one point during the night, I believe it was about 4am, the tech had to come in and change Emily's head dressing because all her wiggling was starting to move the electrodes. She had to cut all the gauze and tape off and then put it all back on again. Emily was so excited about this process!
By the time morning rolled around, we were all ready to go home. The neurologist (Dr. P) came by during morning rounds. We explained some of Emily's episodes. He asked us how many seizures we thought she had a day and we explained that we really could not answer because some of her behavior looks like seizures. There were 3 types of "episodes" that we explained to him. One is her panic attacks. He said those did not sound like seizures but he wondered if they were a reaction to a seizure. She did not do that during the test, so we have no way to know. Two is her twitching when she is moved or startled. We were able to show him that and he said he wasn't sure what she was doing. When he looked at the report he said they activity was coming from the cortex of the brain and an EEG does not track the activity in the cortex. Three is the jerking that she does when she cannot fall asleep. She starles herself awake repeatedly. He said that sounded like a seizure. We did have several of those episodes during the test.
We also explained our experience when we traveled for Thanksgiving. He said that stress can definitely bring on seizures. He suggested that we bring Clonazapam with us on our next trip (that is a med that we were given and she will only take it if there is seizure activity going on). He said the added med may help her to adjust to all the changes and stress of traveling. After looking at the report very quickly, he told us to increase Emily's Keppra dose. He wanted us to increase each dose 1.2 mls over the course of 2 weeks.
We then had to wait around for our discharge orders, which took at least another hour or so. Emily had her electrodes removed and you can bet she looked lovely! The tech gave us a shower cap with shampoo in it. She heated it in the microwave and told us to massage it into Emily's hair to help remove the goop. So Emily got a little bit of a spa treatment! She looked so adorable in her little shower cap. The shampoo didn't remove anything right then. Actually it made Emily's hair really stiff. She looked like she had gel in her hair and stuck her finger in a socket (don't have any pictures of that look - sorry)!
Emily is wearing different pants because she decided to pee all over herself and Mike at one point during the night.
We finally left the hospital at 2 pm (exactly 24 hours after we arrived). We put Emily to bed as soon as we got home. Mike ran some errands and when he got home, I went to run some errands. I threw our cell phone into my purse and headed to the store. I told Mike I would let him know when I was on my way home so we could figure out dinner. When I took out the phone to call, I realized it was off. Oops! When I called Mike, he immediately asked where I was and said that I needed to get home right away. I could hear Emily screaming in the background. He said we needed to go back to the hospital right away. By the time I got home Emily was calm. Mike said she been crying hysterically for about 45 minutes. She sounded like she was panicked and hyperventilating. He had tried to call the docs but the emergency line was busy! He tried to call me and got voice mail and he was about to call 911 when I called him. We really have no idea what happened. We never went to the hospital and she was fine for the rest of the night. The crying fit could have been the result of stress, sleep deprivation or any number of things.
That night, I gave her a bath (thankfully, the goop came out of her hair pretty easily!). We put her to bed early and she slept very well that night. She has been fine ever since (other than the fact that we both caught a cold while we were at the hospital - we blame Mike for sharing his germs with us).
Today, we had an appointment with Dr. F at the neurologist's office. I made this appointment back in August as our regular 6 month followup and I just never cancelled it. Our doc left the practice a year ago and we have not seen a new doc yet. I wanted to make sure we had a doc that was familiar with Emily. We let Dr. F know that we had finished the Depakote wean (YAY!). We also let him know that we did not increast her Keppra by 1.2 mls each dose. We only went up .7 mls. My theory was: if a smaller dose controls her seizures,why give her more? He agreed with that theory. We asked about the results of the video EEG. He said that they did not see any seizures on the video EEG. He said Emily showed abnormal activity in her brain (which shows that she is prone to seizures) and some slow background activity (which shows that she has developmental delays). So we have answers, but really that still leaves some questions in our minds. If these "episodes" are not seizures, what are they?