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How long did it take to diagnose the type of epilepsy?

Posted by on Dec. 31, 2012 at 5:03 PM
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My 3 year old was diagnosed as being epileptic back in September. She's had a CT, MRI, and two EEGs. Everything was normal. We were told it was probably Rolandic epilepsy and she'd probably grow out of it but they stressed, we don't know for sure without an EEG that gives them something. Now, after starting Keppra and having the dose increased as far as it can be increased, Brooke is averaging one Grand Mal seizure every week and "mini seizures" (where she jerks her head back, passes out, falls then wakes up almost immediately) about once a day, sometimes twice a day. We're taking her to a cardiologist to make sure the minis aren't heart related. We also finally have a video EEG scheduled next Monday.

I'm just wondering if it's common for the type of epilepsy not to be pinned down this far into the game. How long was it before you knew the specific type? Does my daughter's story sound familiar? Are some types easier to diagnose?
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by on Dec. 31, 2012 at 5:03 PM
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02nana07
by Member on Jan. 1, 2013 at 8:29 AM

 my sons were diagnosed 1st visit but my husband had experience being around them so he let them know.  I know people that after years still don't know because some are harder to diagnose than others.  My son had several clean EEG's so that doesn't always help with a diagnosis.

atfp4554
by New Member on Jan. 1, 2013 at 1:26 PM
Thank you, that makes me feel better about where we are. I'm hoping that her 3 day video EEG shows something. My husband is a worried and up until now he's been satisfied with an uncertain diagnosis but now he's sort of freaking out and reading about every terrible worst case scenario possible.
rgba
by Member on Jan. 16, 2013 at 6:21 PM

My son had his first (that we noticed) in September of 2011, and we still don't have a diagnosis.  His MRI and 2 regular EEG's were normal, and his twice daily meds have kept him from having any grand mals since last year.  We haven't been able to capture his other incidents on the short EEGs, so finally we are going in next week for the 72 hour.

Part of it has been our delay in testing; I think he would have had a really rough time with the 72 hour last year (he was 2), and his seizures were mostly under control.

However, we are now reluctant to continue to increase his doses every time he has more breakthrough seizures without knowing more about it. 

We were actually told by a neuro that it is a good thing to struggle to diagnose these; the generalized seizure disorders that aren't specific syndromes are sometimes more likely for little ones to outgrow.  Don't know if that is true, or if the neuro was just trying to make us feel better :)

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