← Return to 13-year-old daughter with refractory epilepsy

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ebrown78 avatar

13-year-old daughter with refractory epilepsy

Epilepsy & Seizures | Last Active: Jun 21 9:48am | Replies (20)

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Profile picture for Chris Gautier, Volunteer Mentor @santosha

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

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Replies to "My pleasure @jgu! I imagine you must be feeling anxious about the rescheduling of your doctor's..."

Hi Chris,
My doctor told me not to discontinue the drug during the 72 h EEG. I acturally had 3-4 seizures during those 72 h EEG period. My wife took the time down and provided those to my doctor. Just do not understand how would I had seizures but EEG did not show. I will ask my doctor in the next appointment.
Thanks again for all your advises.
Have a great weekend!

Jgu