Seizures Suck

We need your prayers more than ever these days, I'm afraid. After four wonderful weeks of seizure freedom, Claire's seizures have returned. It all started the Friday before last, when I saw Claire do what I thought was reaching for a toy. My first instinct was "oh, my goodness, she's reaching!" As I looked closer, however, I noticed that her reaching looked pretty rhythmic. Yep. It was a seizure. It only lasted about 10 seconds, but it was the longest 10 seconds of my life. She had another seizure that afternoon, so we called her neurologist, who upp'ed the dosage of one of her medications. We then had another two glorious days of seizure-freedom (Saturday and Sunday) before they came back again on Monday. Poo. Another change in dosage was ordered, and we waited. Tuesday, Wednesday, and Thursday saw no improvement in her seizure activity. She averaged about 5-7 each day, each about 10 seconds long. Her meds were upp'ed again on Friday, and again on Saturday. We have only seen 1 seizure per day since Saturday. That's what we call progress. Over the weekend, we also saw some her make some strange movements that I thought could be infantile spasms. Infantile spasms sound harmless, but they are a catastrophic form of epilepsy, characterized by small jerks and movements that occur in clusters. After looking at some videos on youtube, I was convinced that the movements I was seeing in Claire were infantile spasms. When lying on her back, Claire spreads her arms to her sides and cries out loudly, looking startled. She also tends to flex her legs and get really tense shortly after waking up. We have also seen a plateau in her progress. She is tracking less, and she is not making any progress in lifting her head during tummy time. She also seems less aware of her surroundings from time to time. She doesn't always focus on my face (or Brad's face for that matter), and sometimes she just stares off in the distance. Against this set of circumstances, I called Claire's neurologist first thing Monday morning (today), and luckily, he was able to fit us in for a 1 hour EEG. The EEG showed that Claire did not have the EEG pattern associated with infantile spasms (the pattern is called hypsarrythmia), so we feel very grateful. However, during the EEG, Claire exhibited some of the strange movements that prompted my concern in the first place, and the neurologist has indicated that he would like to explore these further. So, now we are left to wait . . . waiting until the EEG is formally "read" to determine what these movements might be, and waiting to hear back from the neurologist, who will tell us if he thinks further investigation is necessary. He suggested today that we will most likely do a longer, video-monitored EEG for Claire, in order to really see what is going on inside that pretty little head of hers. Now, more than ever, we need your prayers.