Thursday, April 29, 2010

Epilepsy Journey - Part 1

One of the reasons that I decided to start writing this blog was to put our epilepsy journey out there.  I don't know how many followers we will have, but if I can show just one person what we went through and help them, then I am happy.  Our girls have been on medication for five months now and so far so good.  I am always so hesitant to say that.  I am afraid that they will wake up in the morning and have another drop attack.  I feel like I am on pins and needles all of the time.  I have to remind myself "it is just epilepsy."

I know that this is going to be a long post, that is why it has a home of it's own and comes in two parts.  Here is part one of our story:

On the night of 2/12, I noticed that Lizzie was doing something weird with her head. I had noticed it in the past, but for some reason, it really caught my attention that night. So much so, I grabbed the camera and started recording. It was then that we really started to realize that this did not appear to be voluntary movements. So, what is she doing? While she was sitting there playing with a book, her head would snap back, and then her whole body would lunge forward. This happened a few times over the course of a minute or so. Then it happened again the next night. We started to notice that she only did it when she was sitting down, and primarily when she was tired. She never lost consciousness and it did not seem to bother her. Each individual jackknife move would last no more than 1-2 seconds. Over the course of the weekend, I was able to get a couple more videos of her activities. Thank goodness.

Since Monday was a holiday, I had to wait until Tuesday to call the pediatrician. Waiting was very painful and stressful for both Adam and I. I started thinking about the movements and realized that I had seen Abi do the same thing, although not as dramatic. Thankfully we were able to get an appointment with the pediatrician the next day, 2/17. In the meantime, you can't resist taking powers of Google for a test drive. Oh man, lesson learned. Don't ever use Google to look things like this us unless you are prepared for the possibilities. I was not.

We got into the pedi and showed her the video first thing. She did an exam on Lizzie and felt that overall, she was in great health and had a good neurological exam. However, based on the video she captured, she could not rule out the possibility of seizures. The word that I knew existed, but dreaded to hear. From this moment on, life seemed to go fast forward and slow motion at the same time. Immediately, one of the nurses got onto the phone with Children's Hospital in Boston to set-up an appointment with the Neurology and Epilepsy department. We were anticipating having to wait a little while to get into to see them, which we were dreading. I am not patient. To our surprise, literally two hours after seeing the pediatrician, we had an EEG set-up for the next day and an appointment with the neurologist for Friday morning. Wow!

Thursday afternoon we made our trek into Boston. This was such an adventure. The girls had to be sleep deprived for the test. You try keeping two 11-month olds awake in a 45 minute car ride. Especially when the appointments don't start until 12:30 pm and they got up at 6:30 am. I was pulling out all of the stops and still lost them for about 10 minutes each. Oh-well.

I was elected to be the one to accompany the girls, one at a time, into the testing room. Lizzie was up first. Good thing, poor girl was exhausted. I was tasked with holding her down while the tech glued 28 little leads to her head. Once the leads were on, I climbed into bed with her and held her while she got to sleep. After about 30 minutes, the test is over, the leads are removed and we are free. Same process occurred with Abi. Only difference, Abi fell asleep while the tech was putting the leads on rather than scream the entire time like Lizzie. Thursday night, we were all exhausted and spent.

Friday morning came very early. We had to be into Boston to meet with the Dr. at 7:00 am. They were overbooking for us, so we had to take what we could get. I was so scared and nervous, as was Adam. We went over the girls short life history with the Dr. and each girl got an exam. Then came the results of the EEG. Lizzie, the one we were really worried about, had one spike on her test. The Dr. was going to view her test as normal. Abi, however, had more spikes which are abnormal. My heart sank. What does all of that mean? Are my babies ok? Based on the video and the test result, the Dr. is 70% sure the girls are having seizures. More specifically, drop attacks. I tried to listen, but my mind was clouded at this point.  

Part 2 to follow.

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