Julias Mommy
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My two year old daughter is going through testing to find out if she has epilepsy, following what her family doc and myself believe to be seizures.
The first was Jan 22, included an arm injury with no trauma to the head, within 2minutes of fall had what doc believes was a grand mal, quit breathing and eyes rolled up, went limp, collapsed on the ground and convulsed for approx 40sec, then blinked a few times, got up and acted like nothing happened.
Second incident was Jan 23, tripped on a rug and hit coffee table on her cheek. Within 2 min went from fussing a little to quit breathing, eyes rolled up and went completely limp, except for jaw which was locked shut, lasting for approx 20-30secs, blinked a few times got up and was off and running.
Third time was Feb 9, sitting on my lap in waiting room for her sister. She was drawing and went limp, hadnt had a nap so I thought she was asleep. Waited a few minutes to make sure and asked a friend if she was asleep and she said no her eyes were wide open. About that time she started shaking so hard she was vibrating, but it was just head and torso, arms and legs were limp. Saw she had the pen she was drawing with in her mouth, took it out and she caught my finger, pried it loose and her jaw locked up. Vibrating lasted approx 45-60sec, then it quit. Not once during did she move her limbs or make a noise or blink. After it was over she sat up in my lap, took the pen and started drawing again.
We go for a 4 hr video eeg on Feb 15, followed by 72hr ambulatory, then will see pedi neuro on March 3.
After talking to her doc, we now realize things I had brought up previously with her such as staring blankly into space for minutes at a time and not responding to shaking her head back and forth, also for minutes at a time before, beginning when she was appox 8mths old may not have been "perfectly normal, nothing to worry about" but a form of seizure activity.
What all should I expect? Will an EEG really be able to show if she has EVER had a seizure, and if not if she doesn't have one in the office will they be able to tell me anything? What all does a video EEG entail other than electrodes glued to the head? What all is an ambulatory aside from we take her home all hooked up and pray the two yr old doesnt get an electrode unhooked because the pedi neuro is a 2 and a half hour drive from our home? What other types of tests can I expect? Is there a way for me as a parent to know if something shows up on it that is out of the ordinary prior to the doc giving the results? If it shows no seizure activity, any ideas what may be causing all of this?
Sorry post is so long, I am just completely lost on this and feel like I am in way over my head. The doc after number two said it was most likely triggered by pain, so I knew what to look for then, but now with the third it seems it can come out of no where and I feel really helpless, I dont want to let her out of my sight! I wouldnt even know what to look for to identify, aside from the first one which was pretty darn text book. The second two I thought were just odd behavior until doc said no, it was seizures.
Thanks in advance.
The first was Jan 22, included an arm injury with no trauma to the head, within 2minutes of fall had what doc believes was a grand mal, quit breathing and eyes rolled up, went limp, collapsed on the ground and convulsed for approx 40sec, then blinked a few times, got up and acted like nothing happened.
Second incident was Jan 23, tripped on a rug and hit coffee table on her cheek. Within 2 min went from fussing a little to quit breathing, eyes rolled up and went completely limp, except for jaw which was locked shut, lasting for approx 20-30secs, blinked a few times got up and was off and running.
Third time was Feb 9, sitting on my lap in waiting room for her sister. She was drawing and went limp, hadnt had a nap so I thought she was asleep. Waited a few minutes to make sure and asked a friend if she was asleep and she said no her eyes were wide open. About that time she started shaking so hard she was vibrating, but it was just head and torso, arms and legs were limp. Saw she had the pen she was drawing with in her mouth, took it out and she caught my finger, pried it loose and her jaw locked up. Vibrating lasted approx 45-60sec, then it quit. Not once during did she move her limbs or make a noise or blink. After it was over she sat up in my lap, took the pen and started drawing again.
We go for a 4 hr video eeg on Feb 15, followed by 72hr ambulatory, then will see pedi neuro on March 3.
After talking to her doc, we now realize things I had brought up previously with her such as staring blankly into space for minutes at a time and not responding to shaking her head back and forth, also for minutes at a time before, beginning when she was appox 8mths old may not have been "perfectly normal, nothing to worry about" but a form of seizure activity.
What all should I expect? Will an EEG really be able to show if she has EVER had a seizure, and if not if she doesn't have one in the office will they be able to tell me anything? What all does a video EEG entail other than electrodes glued to the head? What all is an ambulatory aside from we take her home all hooked up and pray the two yr old doesnt get an electrode unhooked because the pedi neuro is a 2 and a half hour drive from our home? What other types of tests can I expect? Is there a way for me as a parent to know if something shows up on it that is out of the ordinary prior to the doc giving the results? If it shows no seizure activity, any ideas what may be causing all of this?
Sorry post is so long, I am just completely lost on this and feel like I am in way over my head. The doc after number two said it was most likely triggered by pain, so I knew what to look for then, but now with the third it seems it can come out of no where and I feel really helpless, I dont want to let her out of my sight! I wouldnt even know what to look for to identify, aside from the first one which was pretty darn text book. The second two I thought were just odd behavior until doc said no, it was seizures.
Thanks in advance.