Don't worry, we couldn't pronounce it either. Whit was monitored for 24 hours and it was determined that she is not having seizures. The event that happened last Monday night where she seemed out of it and tired afterward was a perfect example of her new diagnosis. We've known that she has these episodes of opisthotonic posturing, but never could seem to get anyone to explain what it meant and why she was doing it. ...until we met the doctor that visited us while in the Epilepsy Unit this week. He happens to be a Movement Specialist and Neurologist who works in the same office as her current Neurologist and Neurosurgeon. He explained that there are many kids that have stereotypies. They are similar to tics. The difference is that tics tend to start later in childhood and are typically unilateral, meaning happening on one side of the body. Sterotypies are typically bilateral and start at an early age and tend to be more involved than tics. Whit uses her whole body to arch her back leaving only her heels and the top of her head touching the floor. She then flails her arms wildly and pants. Sometimes she holds her breath, but doesn't pass out. The doctor explained that when she holds her breath, she is experiencing "cognitive dissociation." Kind of like being in a zone, but not completely absent-minded.
As much as we are relieved that she is not having seizures, we are now concerned about the extent to which she carries out these episodes. She seems not to have control over when and where they happen, hence the reason that she cannot sit in a highchair or other seating that does not have a back on it, not even a shopping cart. She often throws herself backward and with her high pain tolerance, she is certain to hurt herself if we don't keep tabs on it. The doctor explained that sometimes when kids get older and realize what they're doing they may be able to exchange the action for something less "obnoxious." (that is my word, not the doctor's!) We are hoping that is the case. I would hate for her to be walking someday (assuming she will walk one day) and fall backward to put herself into this posture. It kind of looks like she's a member of the Cirque du Soleil! She's very flexible :) I have started joking to the boys that Whit is playing Twister when she does it! You have to learn to make light of situations to keep the sadness away sometimes!
We are happy to be back home to our boys and get things back to normal. They were all very worried about their baby sister and were so relieved when they heard that she was just fine.
It's funny how things work. Just when I think to myself that it's been a while since we made a trip to Cook Children's we seem to be back on the road for something new. I'm hoping things are going to calm down for a while. Hunter and Chase are both playing soccer and baseball. Hunter's baseball team is practicing 3 times per week and he has soccer twice per week. Chase's teams each practice once per week. Things are already crazy enough around here with that kind of schedule!
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