Hannah's Overnight EEG

I've been concerned about Hannah's seizure activity at nighttime. Some days Hannah wakes up in the morning completely inconsolable. I wonder if that is seizure related and have seriously considered a seizure monitor that would go under her mattress and detect excessive movements. The monitors are about $500-$600 and not not FDA approved so no insurance help. So the neurologist ordered an overnight EEG. Also for her EEG in January she was supposed to sleep for half of it and Hannah would not. She had a hard time during that testing and kept pulling at her sensors, riping at least two out.

So, while Gramma Cherie and Papa Stan came to stay with the kids, I took Rachel and Hannah to Utah.  Since we were borrowing Carol's car, Hannah's car seat was right next to the door. While on the highway (going 80mph) Hannah opens the door a crack. She, of course, thought it was funny and even after I shut the door and locked it, she kept trying to undoing the lock to open the door again.

We checked in around 2:00pm and then Hannah got hooked up. I told the tech about Hannah pulling at it last time, so we decided to glue them into place just to make sure. She was a happy, curious two year old and was doing some signs with the other tech who came to help. Near the end she got restless but it takes a long time to get all the wires and sensors in the right place. Then he wrapped her head up and put her sensor box into a little carry case. Hannah was just adorable walking down the hall in her footed pj's with he head wrapped and carry her little black purse of wires.  I wanted a picture but I was carrying Rachel, the Moses basket, and our suitcase full of books and puzzles.

We went to room 102 and got all settled in (by 5:00pm). She did pretty well with all the nurses and doctors checking her stats.  Since they were video tapping Hannah, she was confined to her bed but with TV, books, and some toys she did quiet well. I ordered her food through room service and while she ate (and Rachel slept) I went to the Cafe to grab my food and bring it back. A nurse stayed in the room and took me what a delight Hannah was. 

We had a couple of tricky spots trying to juggle two kids but for the most part things were uneventful. Hannah even fell asleep quite easily almost better then what she does at home.

I didn't sleep well because Rachel seemed to wake up a lot and Hannah was twisting and turning a lot too. There was on point that Hannah woke up in the middle of the night and I laid down with her to comfort her.  Also, the nurse came in every hour, which was good for Hannah but I was just sensitive to new noises and movement.

The was no seizure activity during the night. We had a great breakfast. I got blueberry pancakes and Hannah had french toast. She did try to jump off the jump a couple of times and got tangled up in her wires a lot. When Steve the EEG tech came back to take off her sensors, she was not a happy kid. She was hysterical and was difficult to hold still. She is very strong for a two year old.  She had very crazy hair filled with gunk when it was over but she was just done, so I elected to do showers when we got home.  We left about 11:00am on Tuesday.

Rachel has been teething so was pretty cranky the whole trip home. However, Hannah fell right to sleep in the car. We got to Malad's rest stop (just over the Idaho border) and I pulled over to change diapers hoping it would help Rachel calm down. Hannah was really just fine at the point nothing usually. We were on our way out the door, when Hannah made a strange sound and went into her seizure. The sound is like a deep chested Oooooh! I slowly lowed us all to the floor. This seizure was more violent shaking but only lasted 30 seconds.  This seizure really didn't bother me, I was surprised but still felt like I could handle it. While she slept it off, I feed Rachel.  Hannah seemed to start waking up so I carried both kids to the car. When I got there, I was stuck not able to put either kid down. Luckily a guy was walking to his car and was willing to hold Rachel while I put Hannah in her seat. I've been very fortunate to be able to find people around in these situations. I went in the front seat to get Rachel Tylenol when, I turned back around and saw Hannah seizing again. Her eyes moved the most with face twitches. I took a video of it and later realized while watching it that her seizure was actually 4 minutes long. She slept the rest of the way home while Rachel cried the whole way home.

Hannah was pretty clingy to me the rest of the day. I got a phone call that my car was done, so Gramma Cherie, Hannah and I went to take care of that. Hannah went home in the van with gramma, while I got the car washed and dropped it off to Carol who drove me back home.  Hannah and Gramma were outside when I pulled up and Hannah smiled and waved to me before the stepped in the door. However, right after that Hannah went into another seizure. Gramma handed her to Nathan was walked around a bit. It lasted maybe a minute or two and was pretty mild with full body twitching.

That was at 5:30ish. Then we said good bye to Gramma and Papa Stan and sat down to eat. Hannah woke up enough to want to sit with me at the table. Within seconds, Hannah went into a very violent whole body shaking seizure. We got a video of it but it is very difficult to watch. That lasted 1 1/2 minutes.

After giving Hannah her medicine, I hoped that with sleep she should be just fine. However, at 11:30pm, Hailey came in our room to tell us that Hannah had a seizure.  The only way Hannah would have woken Hailey up is if she was making noise and yelling out. That only happens with her more violent ones.  By that point, I was just exhausted and couldn't handle much, so Nathan checked on things. There was nothing to do since she already went back to sleep.

At 4:00am, I hear Hannah crying as she is waking into our room. I see her trip near then foot our our bed and I jump out to help her.  She is burning up and is doing her 1 second jerks every few minutes. I get her milk which calms her down a bit (and helped cool her off). I gave her Tylenol and tried a cool cloth which she didn't like. Ultimately, I get her cool enough to stop the jerks and prevent a full seizure.
The next day, Hannah was like Rachel in not being able to communicate or walk. Rachel was more interactive then Hannah was. I showered with Hannah to get her hair washed. It was very difficult to hold 26 pounds of dead weight almost. Near the end of the day when she did walk, she was wobbly and very very slow.

Thursday was just a little better, she was more awake.  It wasn't until Friday where she would really walk and start grunting. Her signs came back on Sunday.

I definitely called Hannah's neurologist to tell him all that happened right after her overnight EEG. He has a good nurse/PA (I'm not sure which) and we have had a good amount of communication. In the end, her EEG came back normal and she was put on Depakote on April 9th to help with the break through seizures. We were going to do the Ketogentic Diet but her doctor didn't recommend it for her specifically at this time.