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New mother to the seizure scene.

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Hello, my youngest daughter is 3 years old and has seizures. The first one was so mild and there was no twitching or jerking that I thought she just passed out from exhaustion since it was bed time and she had a long day. The second one was at bedtime too. We were reading a book and she suddenly said, "Mommy!" I looked.down and her hands were like claws and her lids were fluttering. I've never seen anything like it. She was like a rag doll and groaning and gurgling. We called 911 and ER said nothing major caused it.

Today she saw her new neurologist for the first time. Her eeg was normal bit they want to do another one next week after we've kept her up and woken her up early. They want to start a medication that is known to cause mood changes that may make her act bad. Then if that happens they want to switch to a different med that may be hard on her liver and kidneys so they'll have to do monthly blood work.

I'm a wreck over this. I have no basis for knowledge. I've never known anyone with seizures and so I've joined this group to get a support system. I need someone to tell me it's going to be ok. I'm scared and I just don't know what to expect. My daughter is only 3 so I think it will be a while before she's old enough to tell me it's about to happen. How do you guys deal with it? I need some encouragement.
by on Sep. 26, 2012 at 4:35 PM
Replies (11-12):
by on Dec. 9, 2012 at 10:53 PM

you Could always watch her if you Notice things are Off if you have a Video Camera or your Phone or just a Video Camera in General.. tape what she is doing if you could do it with your phone sometimes you can email the Video to the doctor to watch sometimes that Helps them Understand what you are seeing but that you can't explain.....

Quoting atfp4554:

You all are geniuses. The drug is keppra. We had a second EEG and they still found nothing. They said instead of testing and testing (which has upset her routine and made her a monster anyway) they are just going to see if they can get the seizures under control. She had a third seizure and now we're doing keppra. Three days in and I can't tell if it's meds or the change to her schedule but I have noticed anger issues. We're going to keep up with meds until her next visit on the 31st. For now they're calling it rolandic epilepsy (the good one as my husband calls it) but stress that without eeg results to back it up, they can't be sure.

by New Member on Dec. 9, 2012 at 10:59 PM
My son.was on keppra, lamictal, trileptal and cymbalta. Also he had ,colonapin and valium for emergency use. He still had three to four seizures a day but he.had a terminal illness. I am sure with keppra she should be fine once her levels get where they need to be . It is scary but hang in there it will get better.
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