We have had a busy few days! Friday, April 20th, Lizzie had another EEG. The routine was similar to what we had to do for the EEG she had in October. We had to keep her up two hours past her bedtime the night before, and then wake her up at 4 AM and keep her awake until the EEG at 7:30 AM. Lizzie got pretty sleepy as the morning wore on, so I kept her awake on the car ride to the hospital with a wet washcloth, which of course she did NOT like!
Now that she's older, it was harder for the tech to get all the little buttons glued to her head. You may or may not know, the buttons can't just go any old place; there are very specific locations they have to put them on the head in order to get the best measurements. Lizzie was very wiggly and did not appreciate being held down so the buttons could be attached. At one point Daddy was holding her head still, and I was holding her arms down. This left me in the path of her feet, which she was angrily kicking for all she was worth. I was getting kicked in the face and throat repeatedly, so I finally turned my head. She was then kicking the back of my head, but it wasn't as bad as the face. You may say, "Oh come on, she's ten months old, how bad could it be?" but I can vouch for the fact that she kicks hard! I even have a little bruise on my jaw in one place.
Once they started the EEG, it was pretty uneventful. They let her go to sleep for a while, then they woke her up and flashed the strobe lights at her to see if they would provoke a seizure or other change in her brain waves. Then they got out the nasty-smelling adhesive remover to take the glue off her head. It didn't all come off, so we're still peeling little bits of it out of her hair as we can.
Saturday the 21st we celebrated Kate's 3rd birthday. Her actual birthday is not until the 29th but since Tom's parents were in town and my parents were available we went ahead and had her party that day.
Sunday the 22nd was the Nichols-Purucker Epilepsy Walk. Obviously we had never participated before, so I wasn't quite sure what to expect, but it was a good time. They had asked me to speak ahead of time, so I prepared a short version of Lizzie's story to share. A lot of people were talking when I (and others) got up to speak, so I got a little distracted and didn't end up saying everything I had intended to say, but I think it went fairly well. The walk route was just around the mall, so we didn't have to worry about the cool, windy weather outside, which was nice. The whole atmosphere of the walk was very laid back and casual. If you came and walked with us, or contributed money to the Epilepsy Foundation in honor of Lizzie, THANK YOU! We are so grateful for your support!
Today I called the neurology clinic to see if they had the results of Lizzie's EEG. The doctor I spoke with was one she had seen when she was admitted to the hospital in September, but not Dr. K, who she's been seeing in the neuro clinic. Dr. K was out of town this week so Dr. L was taking his calls. To sum up the results of the EEG, Dr. L said that it was about the same as the one she had in October, but much better than the ones she had in September when she was hospitalized. He said that the EEG was abnormal. It did not show any "epileptiform changes" (seizure activity), which is good. However, it still shows "focal slowing". I asked him to explain what that meant, and he said that it is seen in the context of children who are cognitively delayed or have a structural abnormality of the brain. He said that in and of itself, it is nonspecific in telling us why she has epilepsy, but put together with other tests, such as MRI, it can tell us more.
I will probably call the clinic again in a week or two to speak to Lizzie's regular neurologist and see if he has any further information or interpretation of the EEG. I think it's safe to say that I'm slightly disappointed it didn't show any improvement, but also slightly surprised, because she seems to be doing so well. However, I'm also aware that things could be a lot worse for Lizzie. If this is "abnormal," I can happily live with it!
I also asked about genetic tests to see if any results had come back. He said that the SCN1A and ALDH7A1 tests were both normal. ALDH7A1 is the gene that would be affected if she had pyridoxine-dependent epilepsy; since it is normal, I guess that means she doesn't.
That's about all I know for now; I will try to be better about updating the blog, although sometimes there are periods of time when there's not a lot to report. Thank you for checking to see how Lizzie is doing!
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