Hi Nik,
It's a strange relieved feeling when I read posts of parents who's child has epilepsy and the other issues my son has. I suppose the coincidence is quite small if not extremely minute. There is still some hesitency from his psychiatrist and psychologist because it may be unfamiliar territory for them. Also, son's neuro is an excellent experienced doctor however, I'm still wondering if I should persue an epidemiologist who has expertise in autistic gifted patients. Insurance can be so difficult to convince when the person I speak to does not have the slightest clue what Asperger, epilepsy, and inconsistant brilliance has nothing to do with poor behavior choices.
The steps my son is taking is to first control his seizures. His doc increased his keppra and scheduled another eeg in 3 months. His brother and I notice this increase has made him irritable, impulsive, and argumentative. Hopefully in a couple of weeks, his body will get used to the new dossage and most of these negative symptoms will disappear. I thought after a month of taking keppra the first time, the side affects subsided, he became more thoughtful and able to focus more on his tasks. He was also able to rethink his angry approach and try another effective menthod of getting others to cooperate with him. This was something he didn't do in the past. He also became less tongue tied and articulated his words more clearly.
Sometimes, I can see where my son may have a 'psychic seizure' because this was where the inconsistancy of his ADHD dx occured. Sometimes he felt he didn't need his adhd meds and other times he thought he did because he can't think or get the words right. Right now he doesn't want anything to do with ADHD meds and his doc warned him about staying away from caffinated drinks. I'm glad he made up his mind and followed through with this for the past few months.
As far as school this fall, I had him enroll in a community college near our home so transportation wouldn't be too much of an issue and the courses would also help in determining how the meds are working. I wanted him to work on managing his academic habits and determine what is in his control and what isn't. The most fustrating part of all of this is.... the doctors don't really know either. His neuro says because the seizures originate in the frontal lobes where the executive functioning is...we can hope the keppra will take care of the adhd issues especially be allowing him to have more quality sleeping (time when most of seizure activity occur). I thought about asking my son's pdoc to write a letter to his college that would allow him the same type of adhd accomodations he has had last year. It allows him extra time on projects and tests 'as needed'. He usually tells his teacher where he is on his assignment, what issue he is having and reasonable time he estimates he will have it completed.
Have you spoken to a neurologist yet? I think the journal is a good idea. I write my observations down as well as sleep schedule.... he won't jot things down however, his texting log is very telling.
