status epilepticus and brain damage

After tons of research and questions of my daughter's nuerologist and others, I have come to the conclusion that for the vast majority seizures are nothing more than an embarassment and an inconvenience, unless they are a symptom of something else. SO when doing my research and even when talking with my daughter's doctors, I am not getting many answers about her situation. She has had 4 complex partial seizures starting at age 4. The seizures at age 4 and 6 were febrile seizures. She was taken to the emergency room both times and they both lasted over 30 minutes. We were told this was not serious and it was something she would outgrow by age 7. Well she is 7 now and has had 2 seizures this year. Her 3rd seizure happened in late May. She did not have a fever this time, but had been running and playing outside and was hot and sweaty. I can't help but wonder if this was a contributing factor. She threw up and then the seizure started. Her symptoms have always been complete unresponsiveness with some minor twitching. This seizure lasted about an hour and she was admitted to the hospital for a night. My daughter was not put on meds since this was her first non-febrile seizure but we were given diastat to administer rectally if this happened again. A week and a half ago my daughter was very sick with a fever and vomitting. One day into her illness she had a seizure. This time the shaking was worse and involved her whole body. We administered the distat before the 5 minute mark and called an ambulance. My daughter was taken to the hospital and monitored and given IV fluids and hooked up to an EEG. Six hours after her first seizure, without waking up in between, she had another one. EEG results later showed that the seizure activity had not stoppped from before. Four mg of Ativan were given and then later phenobarbitol to prevent more seizures. My daughter was admitted to the ICU. That night her fever spiked to 106. The next day, still not having awaken, she was given general anesthesia before undergoing an MRI and spinal tap. These tests found nothing. That night, 36 hours after the first seizure, she finally woke up, confused and disoriented. SHe had severe hallucinations that lasted 2 days. She had to be given Haldol just to calm her down and prevent her from ripping out her IV, which she dd twice. She could not remember anything, not even who her parents were. Finally, the hallucinations stopped and long term memory returned, but short term was still awful. She was put on Triliptal to control her seizures and antibiotics as a safety precaution because the cause of her fever and vomitting had still not been disovered. My daughter was discharged after 5 nights in the hospital. We still had no answers and her memory was still terrible. My bright eyed, healthy 7 year old had become confused and lethargic, spending hours just staring. Now, almost 2 weeks after the sezures she is better, but not even close to who she was before. She has to struggle to read or do basic addition. She is unable to complete the most simple puzzle, the kind for a 2 or 3 year old. She stares a lot and just looks sad. We try to play around with her and make jokes to make her laugh. Sometimes this works, but often she just doesn't get it. She rarely talks and can just sit doing nothing for hours if we let her. She has also been irritable and doesn't like to be touched the wrong way or the sound of the dogs barking. It's like she doesn't know how to have fun. If we ask her if she wants to go the park she will nod yes. But then she will slide a couple times, or swing a little, with no smile, as if she is trying to have fun but can't. Then she is ready to go home. This is nothing like who she used to be. I just have so many unanswered questions. Our neurologist is great, and yes I have talked to him about all of this. But he has been wrong about so much. He told us that she would not have any long term effects from the seizure. He also told us she would probably tolerate AED medication just fine. Now he is clearly baffled. I don't know what is going on, but our daughter is not fine. We are scheduled for more testing but I want answers now. Has anything like this happened before? I have found information about status epilepticus causing brain damage but can not find any examples or personal stories about this. I want to hear from someone who has seen or heard about this. What can we expect for the future? Will this get better or are we looking at special ed classes for the rest of her childhood? Is it possible this is all from the medication she is taking or that it is just a prolonged postical state? I just need some answers.