Should I Be Worried?

Hi everyone! I am not new to this forum, I am here a lot reading everyone's posts, but this is my first time posting for information and/or advice.

My son is 10.5 and was dx with absence epilepsy in 2013 when he was 8. He is taking Zarontin for it and it seems to be working pretty well for him in controlling the seizures. We had no idea prior to his diagnosis that he had epiliepsy. I noticed he was having episodes (some of them were really alarming), but thought he had low blood sugar. I took him to the pediatrician about 10 times that year trying to figure out what was wrong with him. He had so many tests. Even she did not realize it was epilepsy. It was a child psychologist that was doing his educational testing on him for the school (the school thought he had ADD/ADHD, Aspergers (we did not ever think any of those things)) that noticed the siezures and told us he needed to see a neurologist. I feel so badly now when I think about it and know that I let him suffer for a very long time with it. I'm also so thankful that he never got hurt. I don't want the same thing to happen with what I'm noticing now, which is why I'm reaching out.

My son often comes into our bed at night to sleep with us or he will have to come sleep with us because he will have an urinary accident in the night. He has an urinary accident 4 - 5 times out of 7/days of the week. When he sleeps with us, my husband and I have both noticed that he twitches and jerks in his sleep. I know that bladder incontinence can happen after a seizure and I am concerned that he is having some sort of seizures in his sleep. We have always thought his bladder incontinence was due to his growth and never realized it could be connected to his epilepsy until just this week when the twitching/jerking was very pronounced (he had a very stressful week at school and with friends). I had a lightbulb moment this week when I realized that the twitches and jerks could very well be seizures and the urinary "accidents" might not be "accidents" at all, but might be his bladder releasing at night after his seizures are over?

Has anyone ever gone through or know anything about this? I am going to call his neurologist's nurse tomorrow morning to speak with her. He has had a VEEG in September 2013, which was right after he was diagnosed. The doctors said then that even on the Zarontin he does have what they called "pre-epileptic bursts" but  not full blown seizures. They tried to up his dosage of Zarontin but were not able to because his body could not tolerate the increased dosage. He got very sick and when they did bloodwork to test his levels his were almost toxic (125). So we had to take him back down to a level he could tolerate. His medication levels still hover around 97, which is high, but as long as they don't go over 100 he is fine. We don't want to switch his medication because he is having success with it and doing the best he ever has in school. Also, we're not sure something else would work as well or have as few side effects as Zarontin. Zarontin does make him very sleepy and occassionally bothers his stomach, but we stick with it. He can go to the nurse anytime at school if he needs to lie down. Most of his teachers have been very understanding. The ones that aren't, we deal with right away.

I am a little bothered that his neurologist would not have been concerned about the nighttime urinary incontinence when she first saw him? Shouldn't that have sent up a red flag? Maybe she thought since he was only 8 at the time that nighttime accidents were not that unusual? I think they are very unusual in 10.5 year old boys with no physical problems.

Thanks in advance for any insight or advice you may have. I will be very appreciative.