There are really no clinical signs but what happens for me are effects that are similar to what I experience when I have a TC. Most days not that extreme but enough to impact my quality of life and ability to get things accomplished. As a result, I also struggle with mental health.

The spikes (Epileptiform Discharges…as I have learned they are referred to in medical terms) occur around times when I’m stressed, tired and/or have missed medication. I only know this because I began keeping logs of my daily activity after the RNS surgery. The data from the RNS logs compiled with my daily logs is very informative and has helped me manage better my quality of life.

I can tell you this, in 1996 when I was 26 and just began having seizure, nothing could have convinced me to keep logs or pay attention to any of the little signs as they didn’t seem to impact my life at the time. Looking back I wish I had keep a journal or logs so I could better see the changes that have occurred rather than trying to remember (I don’t trust my memory at all now).

All that said, I will sum it up like this…pay attention to the little things. Encourage your son to ask questions and keep records (once a habit is formed it’s easier to maintain than when first doing it).

And if you have any questions or comments, I will be happy to answer or just listen.

Wishing you the best.

And Hi Randy! 😊

after 2.5yrs seizure free my son had nocturnal tonic clonic seizure (he only has nocturnal tonic clonic seizures), keppra dose was raised to 2000mg per day but eeg was v active so neuro recommended 2500 keppra plus 800mg zebinix. my son was reluctant to start new meds, but had another tonic clonic after 4 months so has now agreed to start new med. has eeg next week so hopefully activity will have gone down. neuro is hoping to wean off keppra in the future if zebinix works.

My son started having seizures at 17. Keppra was one of the first meds we used, but after 3 months or so he became quite violent and really angry. Since then (he is now 27) we have not found anything to control his seizures. He has a TC about once a week at night while sleeping. He has a VNS and we are considering an RNS. I hope your son can keep control of them and they don’t worsen with age. If he is doing well on keppra, I’d consider keeping him on it. Why are you trying to wean? Is it because he has been seizure free? Or are you trying new drugs? If keppra works, keep using it. Just my thoughts.

It sounds like you may have to look for another Epileptologist that you can get decent appts with.

hi eric, my son does not really want to engage at all. at the moment epilepsy does not impact his life apart from having to take meds which he hates. the plan had been to wean off keppra if he had gone 3yrs seizure free so you can imagine how disappointed he was when he had a seizure after 2.5yrs seizure free. instead we are being told to add more meds. our neuro is an epilepsy expert. I think my son really needs a one to one with neuro to discuss everything. appts are very hard to get though so in the meantime we are in limbo. I think my sons epilepsy has had a greater impact on me than him! My anxiety is through the roof, epilepsy is all I think about and am waiting for the imminent seizure the neuro said was coming but hasnt after 4 weeks post active eeg. I try not to be a helicopter parent and in fairness he just leads a normal teenage life.