Advise, new to the site

Hello all. My son was diagnosed with epilepsy (or some form of it) about 2 years ago or so, at 10 years old, and the Neurologist started him with Epival ER 250mg, 1 every 12 hours. Mind you, the Neurologist only told my wife and me that he had a deficiency in his brain, that the meds were just to prevent anything further, and that with diet and vitamins all could be resolved in a years’ time if the deficiency disappeared, she said he was saturated with glutamate and that caused the irregularity’s in the EEG. We came to her on the recommendation of the psychologist since we were treating supposed behavior problems (socialization, self esteem and maturity problems, because of a grave bullying problem he had a year back that forced us to change schools), at the time we had no idea that the med she indicated was for epilepsy, even though we read it, she did not mention epilepsy, and just said that it would help regulate his brain, attention and mood, so we were not looking for any kind of seizure signs or anything else for an entire year. A year passed, we went for the yearly checkup, everything was fine with the EEG and the other test, and the doctor recommended that we stopped the medication slowly that he would not need it anymore (mind you, during this time we did had a couple of strange things happened to our son, but we though it was just him trying to get more attention, one was a sensory depravation exercise in his class in which he just started screaming uncontrollably without any reason (he said zombies were going to get him, he has never had a dream about this before or after this), and the other was even weirder in a biology class, they brought a uncooked chicken and he got “scared”, started screaming and would not get near it or look at it, and he has seen uncooked chicken before, he never could explain why he reacted this way in both cases, so not knowing anything else we dismissed them). But when we were at the last part of eliminating the medication, he was only taking half a pill a day, he had an “episode”, he started screaming and dropped to the floor without any other thing, he explained himself saying that he just started to feel hot and he though the floor was cool enough and he wanted to rest his head on the floor to cool it down, he also had a headache, he did not remember screaming or dropping to the floor, he though he went down on his own will, this was in the classroom, the teacher picked him up quickly and sent him to the infirmary, were they called us the nurse that knew the medication he was taking, told us he had an epilepsy episode, this was the first time we heard the term epilepsy to refer to our son. After this, the Doctor ordered more tests, and said that we had to reestablished the medication as it was, with this everything kind of went back to normal, we still had no feed back as to the doctor officially saying he had epilepsy or not, or to be on the look out for seizure signs, but after the scare and some research, we started being on alert and could see the relation for his school grades being what they were and that maybe he was not being distracted at all. On the doctor’s tests and exams, the psychologist test, it never showed any deficiency in attention (no ADHD) and that his intelligence was within the normal range. We did a recount on his behavior and could see that a lot of them could be explain my small seizures of the absence kind, before the medication, he used to have frequent ticks and rolled his eyes a lot. This has never affected him playing sports, he does BMX, so that’s good that he can still do this without risk. We have never told him he has epilepsy or seizures, the doctor and the psychologist told us not too, so he can lead as normal life as possible without feeling strange, we have only told him that he has a delicate condition, that he needs his medication and that playing videogames do him more harm than good because of the condition. So, this New School year started, the first month was good, the grades were not excellent, but he at least did not have any incompletes. By the second month we got called in by the school psychologist as an emergency, and we then were told that several teachers were reporting that he was being very distracted in their classes, not paying attention and sometime did not answer when called upon until the 2nd or 3rd call, and the psychologist told us that she called him to her office to talk to him about it, and that within that conversation he had 2 absence seizure with his eyes rolling back. So again, to the neurologist, more tests and exams, and she determined that we had to bring up the dosage from 500mg a day to 1000mg a day, because it stopped being enough for him. The doctor still has never said to us directly is epilepsy, which just makes us nervous. Right now, we are waiting to see if the teachers and the school say if there has been any improvement, the grades do not show it yet and the little conversation we have had appear to indicate that he is still having absence seizures. I write this post for some orientation, we just aren’t sure anymore on how to deal with it, he does not seem to have any “seizures” outside of the school, maybe with the exception for when he’s eating, that he has told us that he just looses time (it takes him from 30 to more than 60 minutes to eat, he just dozes of). On our meeting with the teachers, they did refer to us, that when they got him one on one, he did pay more attention and he did his work just fine. Sometimes, specially my wife, feels that maybe he’s not having seizures, that he does not have epilepsy at all, that he is just being a kid, I want to believe her, but the EEG says different. Sometimes I doubt, because, can seizure manifest with absurd behavior as reported by the teachers, they say he sometimes in the middle of the class ask questions that have nothing to do with the subject but that are no joke to him, and he insist on getting and answer on them. We have seen him change in this last 2 and a half years, from a boy that was really goal oriented, to a person that just has a very dispersed mind, he still has goals, but he does not seem to care that he is not doing enough for them believing he is not good enough, which was something he did not do. Sorry for the long post, hope we can get some answers or orientation here, we are just not sure enough, and we are very scared of the side effects of the meds, or if they are really working. We are thinking on going to another pediatric neurologist for a second opinion, but we live in a third world country, so getting that second opinion has proven to be very difficult because of the waiting list. God Bless you all!