My 3 year old has cortical dysplasia. She began having seizures at 5 mos old. Over the past 3 years she has had periods of seizure control with medication, the seizures would begin again, followed by regiment of increasing her medication dose until she was out of the therapeutic range and then moving on to a new med. She is now on her 3rd medication; she has been seizure free since Aug, but we have learned through long-term monitoring that she is still having a significant number of sub-clinical or EEG (can't be seen by the naked eye) seizures throughout the day. We have done all of the tests (MRI, PET, 3-T MRI, SPECT, etc.) and are now at the point of meeting with the surgeon to discuss the risks/benefits associated with surgery. We would be looking at a right frontal and right temporal resection.
The docs are encouraged by her young age and ability to recover from the surgery. Currently, she is doing well developmentally, but her docs are convinced that the longer her brain "learns to seize" that eventually, she will not be able to keep up developmentally. Obviously, we are very nervous and absolutely want to do the right thing for her in the long-run.
Any advice, comments, personal stories...positive or negative would be greatly appreciated!
Thanks in advance!