Tuesday, June 10, 2014

So Much For Being Cleared For Seizures

Jewell has had very short duration staring spells since she was pretty young. The earliest I remember her having them was at 3 1/2 years old. Initially I blew them off as her daydreaming, but they did concern me since it was impossible to get her attention during one. It wasn't that she didn't respond to her name, because she never really did that, but it was that she wouldn't even respond to my touching her shoulder or waving my hand in front of her face. Eventually I decided to make a mental note when they happened but not to be overly concerned, because how many different "issues" could she possibly have?

At one of Jewell's visits with her Developmental Pediatrician last year, I was asked if she had staring spells or episodes where she stopped in the middle of doing something, then went right back to doing whatever she was doing after the pause. My heart sunk. At that point, I had kind of gotten used to thinking of them as "just daydreaming" and had never thought to bring them up to one of her physicians. I described them to her doctor and admitted that I was pretty vague on the details, but that she had them on occasion and not very often. They were always really short. We decided to add a visit to a Pediatric Neurologist to get their opinion.

Jewell has had an EEG and a MRI (with sedation), both of which came back normal and gave me that bit of hope that we didn't have to worry about seizure activity. Her neurologist even said that we didn't have to come back to see her, unless something else happened to require further evaluation. I was super excited to knock a specialist off our list!

Then yesterday morning it happened. Jewell woke up happy and singing. She proceeded about her morning as usual. She started drawing pictures, still singing and chatting to herself. After she threw one of her art mishaps into the recycle box, she paused and just stared at the wall. I was several feet away from her and being puzzled at her behavior I went over to see what she was looking at. When I was about 3 feet away from her, she snapped out of it and proceeded to grab a sheet of paper out of her art drawer. When she turned around I noticed her pupils were huge. Several minutes later, it happened again. This time she was retrieving a new piece of paper and had sat it down on the table. She then sat on the arm of the kitchen chair and just stared off into space. I noticed that her pupils were dilated and her expression was blank. I waved my hand in front of her face and said her name, and there was no response. My next thought was to grab the iPod and try to get video (later I realized I should have touched her shoulder or nose to see if she responded). Normally when she sees me preparing to video her she will say "no iPod" or "no video". She said nothing, but made a small noise and snapped out of it before I could start the video. This time she seemed confused and grabbed the clean sheet of paper, balled it up, and threw it in the recycle box. She was very subdued and quiet afterwards, and it seemed like she was tired.

I sent her to school, like normal, and let them know what I observed. They reported that she had a good day and they didn't see any other "episodes". I also spoke with her neurologist and we are back to monitoring her for more episodes like this. The next time she wants me to touch either her shoulder or nose and see if there is a response. She will also be speaking with her Attending to see if we should pursue more testing or just continue observation for now. She did admit that they sound a lot like absence seizures but that they could just be daydreaming, and that absence seizures can take awhile to diagnose or rule out.

I just hope we can figure it out soon. I might need to contact 4 Paws for Ability and inquire about adding seizure detection to Jewell's service dog's duties. It's always something!

No comments:

Post a Comment