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Complex partial epilepsy that presents like absence?

Jodi - posted on 08/01/2012 ( 2 moms have responded )

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I'm a basketcase and am finding a great deal of peace reading through the threads of conversation on this site. Just knowing that you all are out there is providing me with the ability to breathe a bit deeper. My just turned 6 year old daughter started having absence seizures at some point over the past few years, but were increasing in frequency and strength over the past months. She stops, stares, roll/twitters her eyes upwards and comes back without much confusion where she left off. I find myself super tuned into them...I think she is in a blank seizure state far more often than we realize though...but neither of her two teachers even noticed them. Her first eeg showed abnormal localized brain activity in the left frontal lobe with no spread to the rest of her brain, even when triggered with typical epilepsy triggers. We were rushed to Childrens the next week where they did another eeg and provoked the triggers further. WIth this reading, the pedi neuros were able to see spread to the brain and diagnosed her with complex partial epilepsy. We started Clobazam in 10 mg for the past two weeks and are increasing to 20 mg today. Initially, I thought I saw a decrease in frequency, but the last few days, she seems to be having a ton in the morning in particular. I guess we'll see what the increase does. I have noticed that she is more out-of-it, although I think this may also be the medication effects.
I feel the strong need to connect with you all. Just knowing that you are fighting similar battles is helping me today, and will continue to, I suspect....

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Jodi - posted on 08/15/2012

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Thanks Annette. We wereback down to Childrens Hospital to the neuro again yesterday as the clobazam isnt working. so we are starting Lamotrigine (Lamictol? I think for you in the States) and hope that will help. what medication have you found?

Annette - posted on 08/02/2012

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Awwwww Jodi you are writing words for me! I know all too well this journey as we just began it "again" after being seizure free for 15ish months. These threads have been my saving grace of knowing I am not alone too. Our newest dx is complex partial left lobe as well. For our daughter I noticed the abscence first. She does have some extremities that now jerk though. I totally get being the only one to notice them though. We just visited a new neuero who said hers were subtle. I think that it is VERY hard for others who have not walked in our shoes to notice them as I feel that society as a whole is only accustomed to seeing seizures in movies and have a mental picture of what EVERY seizure should look like. I have a video of one of her episodes and when I sent her back to preschool after this new dx I showed the director and when she saw it she said "Oh, that's it? I thought seizures looked different" I didn't know if I should be pissed that she said that's it or heartbroken for the millions of people who are affected with epilepsy that are put in a box of how their seizures should look. Also, check out epilepsy foundation, epilepsy.com and I have found some educational videos by drs on you tube in fact I bet if you typed absenst seizure in you would find some. Also, I am having the same struggle with our new med and is that a 'absent' out of it look or is it the new med? Hang in there mom!

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