I'm reaching out to all of you as our son is struggling with partial complex seizures.
In brief, last July (6 months ago) he was diagnosed with epilepsy and meds seemed to keep things in control. But as of December 18th, the seizures started spiraling out of control. From 1 seizure a day to 24 a day. We have been in the hospital for 10 days. After introducing 3 more medications, steroids and about everything else, the seizures are exactly where they were when we walked in the door. Unfortunately, this disease is quite elusive and sometimes seizures are not responsive to meds (there is a lot more to this, but it would take me a long time to explain), and often surgery is an alternative. Scary one.
After the 3.0 MRI a few days ago, Cortical Dysplasia is now ruled out. The MRI also didn't show any atrophy so RE is not on "hold" as a diagnosis. After 4 days of IVIG, the seizures have reduced from 22 a day to 14. Better, but not good by any means. So what to do next? We are trying a lumbar puncture tomorrow to look for bacteria and viruses. Any other ideas? Should we check into a hospital with an Immunology department? There is also talk of it being an auto immune issue. We don't know what steps we should be doing next.
I'm hoping someone may have some contacts to help us find the right place to treat his disease.