Clarissa’s Story

About a year ago out of nowhere my 10-year-old son, Emerson, had his first seizure. We went to the ER in shock not knowing what to do. They said it could’ve been a fever seizure or just a one-time thing and then released us. Then 3 weeks later on our way to my mother-in-law’s in Port Charlotte, Fl he was having a seizure as we got off the interstate. It was terrifying and calling 911 I found myself unable to speak. I felt confused and concerned while all at the same time yelling “now” to try and throw him out of the seizure. We went to their ER and they said to follow up with a neurologist back in our city. As we were discharged after two hours, ten minutes later he had a full-on 4 1/2-5 minute tonic clonic convulsing seizure and bit his tongue. We were terrified. We called 911 again and the fireman came to help us and once again another ambulance ride. The same hospital said they weren’t equipped for pediatrics and had Golisano Children’s hospital send up their ambulance to transport him to their facility and do some testing. I met our neurologist and after an overnight ECG and informed me that he has generalized Epilepsy. We were devastated. The fear of witnessing the seizures has left me with constant fear and getting up throughout the night to check on him. We have had to change meds several times. His last seizure was a couple months ago in December 2023. He was sleeping and I had walked in on him having a seizure into his pillow and his lips and chin were blue and we called 911 and went to ER. We were there for a couple hours and released. The most comfort they could give me was, “Follow up with your neurologist since he’s already diagnosed.” The most frustrating thing as a parent with a child with epilepsy is that they won’t remember anything but you remember everything when they have a seizure. The feeling of helplessness is an understatement. Every day we pray and are trying to get him a seizure watch so that at night we can have some peace knowing that he is being monitored and safe.