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13-year-old daughter with refractory epilepsy
Epilepsy & Seizures | Last Active: Jun 21 9:48am | Replies (20)Comment receiving replies
Hi Chris,
Thanks so much for the information! I had brain MRI and 72h EEG early this month. My appoint with docotr was reschdule to next month. My doctor did call and told me that the EEG seems normal too :-(. My medication changed from 1000mg per day of Keppra to 2000 mg/day, now 3000mg/day with ER version. It seems my seizures still happens 2-3 times/day (only when I take a nap in the afternoon or when I sleep at night). It has been more than a month and half since I took the medication. I am very frustrated. Just a quick question - you do not have to answer it. Have you consider the surgury options since you know the lesions that cause your seizures? I asked this because I was trying to lay out my options. And you are so knowledgeable! Thanks a lot!
Jgu
Replies to "Hi Chris, Thanks so much for the information! I had brain MRI and 72h EEG early..."
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My pleasure @jgu!
I imagine you must be feeling anxious about the rescheduling of your doctor's appointment, which is completely normal when you're still trying to understand your situation. Don't worry, time flies—your appointment will be here soon. Try to stay busy with activities you enjoy in the meantime.
Regarding surgery, doctors investigated that option for me, but my sclerosis is located on the left side, which is the dominant side of my brain. Surgery wasn't recommended because the potential risks could outweigh the benefits. This is why it's so important to complete all the tests your epileptologist orders—he or she needs a complete picture to determine the best treatment options for your specific situation. I know this screening process and all these tests can feel overwhelming, but you'll be amazed by your own resilience when you get through it.
As for EEGs, all mine were normal until I was 48 years old, meaning no epileptic discharges showed up during those tests. However, having a normal EEG does not rule out epilepsy. Even today, my EEGs appear normal because of the medication I take, but I still have epilepsy.
During your 72-hour EEG, was your medication reduced? Were you put in situations that might trigger your seizures, like the afternoon nap you mentioned?
Chris