Hello! I'm new to this site...I don't have Epilepsy myself, but my 8 year old son does. I came here hoping to find some answers...if anyone has had any experience with this. My son had his first seizure when he was 23 days old. He started out with Tonic Clonic seizures and progressed into Grand Mals. The only thing that has remained the same, is they only happen while he's sleeping. I am fortunate enough to live in the Cleveland area...with access to some of the best hospitals in the US...and no one has been able to give me an answer. Doctors have never been able to pinpoint an exact location for the seizure activity. He's been through countless EEGs, MRIs, PET and CAT scans and no answers to be found. And his seizures have been changing so drastically. When they progressed to Grand Mals...it was always the same..he would wake up, let out an ear piercing scream and go into seizure activity. Now, it seems as if he's aware that they're happening, and trying to get up while they're occurring. He is currently on Triliptal..after starting out on Phenobarbital and Topamax, and he's had breakthrough seizures on all meds.
What I'm wondering is this...has anyone out there had any experience with this? With seizures that only happen during sleep. Either personally or with a child/loved one. I would appreciate any feedback! Even if just to share your story! Thank you for taking the time to read this!