stressed out mommu

Posted in the wrong category the first time and I don't know how to change it. . . My 3.5 year old son was just diagnosed with epilepsy. He had his first tonic clonic seizure back in March, but at the time we thought he had fallen and hit his head. They did an eeg and he had some abnormalities while he was sleeping but that was it and none of the doctors were concerned. Then on June 22 he had another tonic clonic seizure while he was on a trip with my parents. They rushed him to a rural hospital where they kept him for tests and to put him on oxygen (he also has asthma and his oxygen level wouldn't stabilize). Things were going good and we were being referred to a neurologist, but before we could get an appointment he seized again on July 3. We took him to the hospital in our city and he was seen by a neurologist. They prescribed Valproic acid for him and sent us home. The next day when I left for work at 12 he had another seizure while he was home with my husband. He fell and landed on his face. He busted his lip and bruised his chin. When I got home it had stopped and he was sleeping. ( I work 2 min from home) We took him back to the hospital and after being there for 1 hour he went status epilepticus. I have never been so terrified in my life. His stats started dropping and they were talking about having to intubate him if the seizures didn't stop. I thought I was going to lose my baby. . . The med finally kicked in and they took him for a ct scan. It was clear. They started him on his meds and kept him for 24hr to watch him. He has generalized juvenile epilepsy. Last night he had his first seizure since he's been on the meds and I flipped. Called 911 because I was terrified he was going to go into medical distress again. He was ok. Aside from the seizures he now goes into these almost manic episodes. I think it's from the meds, but it could be the epilepsy too. He gets very aggressive, hitting, biting, pinching, and won't listen to anyone. He thinks it's funny. He is normally a very mellow, gentle boy. I just wanted to post on here to get it all out. I am so tired, haven't slept well in weeks. I want to cry, and yell, and honestly I want to go back in time before this happened. I am a big control freak normally and feel at a loss right now. I have great support systems, but don't really feel there is anyone one I can really talk to about this. My husband is amazing, but I want so bad to be strong for him and both our children. (we also have a 5 year old daughter)