Hmmm...good question.
First, congratulations on being seizure free!! And med free!!
OK, Trileptal. I don't know if there's any studies out on long term effects of meds (once stopped), but here's our experience with Trileptal (and a couple others).
Our son was on Trileptal for about 4 months in 2010 (when he was 6). It didn't help his seizures (in fact, seemed to make them worse), but the side effects were fairly horrific.
1) He became extremely aggressive (hitting, biting, kicking, pinching, pulling hair, knocking teacher's glasses off) to the point where the principal of his school wanted to have him removed and place in a school for juvenile delinquents. This was a child who had never been aggressive to classmates or teachers or family members previously -- in fact, he won the "good conduct" award the previous year.
2) He became extremely hyperactive -- to the point where he couldn't sit for even 10 seconds. He wouldn't stay in his desk at school, he couldn't even sit on the toilet long enough to take care of business. Once again, this was the child who had previously been able to sit quietly and focus on instruction for reasonable amounts of time.
3) He became incontinent
4) He had some cognitive setbacks -- especially with spoken language (this had been an issue previously)
****
OK, how many of these effects have continued??
1) The aggression abated by about 90% when he was weaned from Trileptal. However, it reappeared again when he was on Diazepam and Keppra, as strong as previously. Now he's been off of Trileptal for over 2 years, and off of Diazepam and Keppra for several months. We're still seeing some aggression -- not as much as before, but my husband says it's like he got in the habit of hitting, etc. and can't seem to eliminate it completely now.
2) The hyperactivity is pretty much gone -- he can sit still for long periods of time, in school and such. But he can get distracted extremely easily. It's very hard for him to learn anything at school -- he almost has to have one-to-one instruction in a little corner by himself.
3) He's pretty much not incontinent now -- occasional accidents.
4) Cognitive setbacks have not been regained.
************
Since Jon was on Trileptal, he did go for 1 year seizure free, , and then he had a serious relapse, and now seizure free again for 3 months. I don't know how many of the ongoing problems can be attributed to lasting effects of Trileptal, or to lasting effects of seizures, or to lasting effects of other meds. Also, since he's only been seizure free (again) for 3 months now, and is still on one med (Zonegran), I don't know if time will heal some of these issues, and if possibly eventually removing Zonegran will help.
