On Tuesday Gwena woke up in the middle of the night and wouldn't go back to sleep. She rolled around, she talked to herself, for what must have been at least an hour or two before she finally went to sleep again. When she woke up in the morning, she was fussy. She rolled around on the bed next to me, seemingly still half asleep, fussing and fussing, like she sometimes does when she has gas.
All of a sudden I saw her body shudder. It was a cold morning, so I figured she was shivering with cold. I drew her to me and tried to warm her with my body and the blankets, and as I held her that shudder happened again. It was like her body made one big twitch. She started crying more and it happened again, and kept happening, every few seconds. I began shouting for Jon and throwing things at the bathroom door.
Jon got out of the shower and I told him what was happening. He took Gwena and I remember the terrible look on his face when he felt her body shudder. We threw clothes on, put Gwena in her car seat and left to take her to the emergency room. I sat beside her in the car and covered her with some blankets. She was staring out the window vacantly, but when I said her name she turned and looked at me. She didn't seem to be twitching anymore, and as we started to drive, she closed her eyes and fell asleep.
I called her pediatrician's office and spoke with a nurse there, who said Gwena was not in immediate danger and we could bring her to their office rather than the emergency room. We got the earliest appointment we could, for a few hours later, and went home to wait. Gwena woke up at home and I nursed her and fed her breakfast. She sat on the couch and I put her favorite video on, and she just stared at it, tired and out of it.
The pediatrician said it could have been a seizure, and ordered an EEG and referred us to a neurologist. She said it was a good sign that Gwena didn't lose consciousness and that she was alert and responsive while it was happening. She said that sometimes a child will just have one unexplained seizure and then never have one again. We hope that's all it is.
The rest of that day she seemed extra tired and fussy, but by the evening she was back to her normal self. Wednesday we went to CF clinic, where everything looked great and her weight was 20 lbs 15 oz. They increased her zantac and want more blood work to check her iron levels. Dr Y didn't seem concerned about the possible seizure when I told her, but then again she is a pulmonologist, not a neurologist.
Yesterday we took Gwena to CHOC for her EEG. We were told to not let her go to bed until 10 the night before, then wake her up at 6, and not let her nap until the test. She napped for 10 minutes during her saline treatment before I could finally wake her up again. She was alternating between out of it and fussy when we got there, then started screaming as the tech began attaching things all over her head. It was hard to see her so scared and upset.
When he was done he wrapped her head in gauze. Then I got to lie on the bed with her and she fell right asleep. They flashed a light at her for a couple of minutes, then turned it off. The test went on for a while and I almost fell asleep too! Gwena wasn't the only one sleep-deprived from getting up at 6am (an hour I prefer to ignore the existence of!)
At the end of the test we had to wake her up, which it turned out nothing but a cold washcloth could do. Poor baby! She didn't open her eyes, but began to cry and scream, then he removed the cloth and she conked out again.
The tech said it was a very successful test and we should expect results in 7-10 business days. Is it just me or is that a really long wait??
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