I'm a little late with my intro.
I have two sons that have/had epilepsy. Ds1 and Ds2 were identical twins with Tuberous Sclerosis Complex, a genetic disorder that often causes epilepsy, cognitive delays or learning disabilities, and autism. In our case, the seizures/infantile spasms started within just a few months of them being born.
Ds1 is six, and his seizures (BIG KNOCK ON WOOD) have been pretty well controlled with his current medication Felbatol. Before that we tried at least five other meds, and none of them worked for more than a few months. He had infantile spasms as a baby, but Vigabatrin was very effective in stopping those (he also went through ACTH injection therapy). His biggest risk for seizures are when he's sick...some viruses he's fine with, others seem to be extremely neuro-toxic for him. Last March he was in the ICU because of a very long seizure--we could have lost him. He has pretty severe cognitive delays (functions at 12-18 months), is physically very able, and has autism. He's non-verbal, and we've been struggling with some of the increasing difficulties with his autism--the self-harm stimming, anger and frustration, etc. We've found that he's doing much better on a small dose of Risperdal.
Ds2 was five when he passed away. His seizures were always much more difficult to control. Like his brother, he had infantile spasms (also stopped with Vigabatrin), went through many different seizure meds, and finally a combination of Felbatol/Lamictal was what worked for him. He also had two brain surgeries to remove epileptigentic (sp?) areas of his brain...one at 2 years old, one at almost 4 years old. Both of them were wonderfully successful, and gave James a big boost in the quality of his life. Despite all his challenges, he was a really happy kiddo. He was also diagnosed with autism, was non-verbal (though he did say "mama" and "dada" for a while before his language regressed), and was very cognitively delayed. His seizures were under control for the last year of his life, but he caught a virus at school and something about that virus caused a severe seizure (he had never been prone to virus-related seizures before). The seizure caused his heart to get stuck in an arrhythmia, which caused a lack of oxygen to his brain.
It feels weird to list out their challenges/procedures like that, but I should say that despite all the medical stuff and scary experiences, my boys have been a joy.
I love them both with all my heart.