We think Emily had a new kind of seizure on Saturday night.
Let me rewind just a little bit.
Emily has been doing really well lately developmentally. She has been sitting assisted and even unassisted for longer periods of time, her visual awareness and focus has continued to improve, and she has been vocalizing and responding to me, Gee-off, her brothers and sister, and her nurses more and more often with kissy noises, babbling, smiles, and laughing. Lots of laughing. We've found that if Gee-off is snuggling with her and starts kissing her cheek and neck she really laughs, that nice big belly laugh. It's so nice to hear.
Sometimes she seems to bust out laughing for no reason though too. And until Saturday night, I was happy to hear it anyway. "Oh she's laughing again!" And I'd run to grab the camera or video camera to record it. This time, Gee-off was making her formula in the kitchen and I scooped her up from her crib in the den and brought her out to show him. But she was slightly shaking by the time I got down the hallway and had stopped laughing that fast. So I continued to the living room to do the last diaper change of the night, but then realized she was still shaking. And then she closed her eyes and mouth tightly and wouldn't respond to us talking to her. Her arms were shaking the whole time, for about 2 minutes. Afterwards we waited to see if she would go back to "baseline" (her "normal"), and she did, trying to mouth her fingers, eyes open and looking around, not shaking.
We talked for a while about calling the on-call neurologist at CHOP to see if we needed to go to the ER, but she seemed fine and was sleeping normally within the hour so we decided to take a wait and see approach unless it happened again.
But, I couldn't sleep right away and in the back of my mind I remembered reading a few times about laughing seizures. So, I did what I shouldn't have, and Googled "laughing seizures". Sure enough, there is a type of seizure called a gelastic seizure that seems to be what Emily had. The person will burst out in a belly laugh for seemingly no reason at all, but it is actually a seizure. It also said that gelastic seizures can be caused by a benign brain tumor, and that removal of the tumor through surgery could stop this type of seizure completely. Surgery is not a great option for Emily since she coded during her gtube surgery in July of 2008. For her, it will probably mean a change to the diet or another med.
I'm waiting for a call back from her neurologist to see if we should bring her in sooner than her next appt on March 22nd. I'll keep you updated.