Community Forum

9 year old weaning off trileptal

My son had a seizure at age 4 and then again at age 7 and has been taking trileptal for two years, 600mg a day.   His neurologist wants to wean him off and I am concerned.   We saw a hugh change in his mood when he started the trileptal from being tired and distracted to focused and smiling much more.  He has not had any side effects and has had no seizures on the medication.   Ayy thoughts?    Thanks!


I understand your concern.  I cannot not offer any personal information.  However, from what the doctor told us a few years ago after a child has been on meds for a couple of years seizure free, they will start to wean the child off.  So, this is a good thing.  That is the ultimate and most hoped for goal by all parents of a child with epilespy, seizure free and not dependent on meds.  Take it slow, if the seizures start again, just let your doc know.

Best of luck, my prayers are with you.

ChiTownMom - Just A Mom Doing Her Best For Her Child

Hi, I've been trying to find out more information on weaning Trileptal. My son(13yrs old) just had a clean EEG(yeah) and has been on Trileptal for about 4 years with no seizures. We are starting to wean him off and would like to know what to expect. This was posted a couple of years ago and I would like to know how everything went on weaning. Or if anyone can give me any advise it would be greatly appreciated. Thanks. He was only Trileptal for partial seizures that secondarily generalized.

My son is 10, almost 11, and we will begin weaning him off
Depakote at the end of this month. This is the second time we are going thru
this process. He had his first seizure at age 3 and continued to have them even
while on Trileptal so the Neuro changed him to Depakote. That controlled his
seizures very well and after 2 years of him being seizure free, we decided to
wean him off. He ended up having a breakthrough seizure at that time so we put
him back on Depakote. Now, 5.5 years later we are trying this again. His 24
hour EEG was normal (but, then again the Depakote is known to falsify EEG test
results) Still there seems to be no other way to tell if he will be seizure
free while off meds. So here we go. Im freaking out to say the least. Just the
thought of him having a seizure and not being able to know what kind of seizure
he will have (because he’s had all types) is very nerve racking. I dread
getting that call from his school to tell me he had or is having a
seizure. Ever since he had that first seizure its been like a black
cloud over me. I never knew the cause of it. Nobody knows. All his tests
come back normal and it doesn't run in the family. Sooo im hoping
everything goes well with the weaning process and now that hes bigger
maybe he grew out of whatever it was


 My son is 14 is just had a clean EEG. We have been weaning him off for 4 weeks now and he has major focus/concetration issues (other than being 14) and is at this point severly depressed (first basketball game yesterday. his team won 46-19, by the time we got home after dropping his friends off he cried for almost two hours straight saying that while he was in the game, he felt great. As soon as the game ended he felt like everything was collapsing in on him) Its very scary. Kept him home from school today but dont know what to do. We fear that calling his Dr will only lead to more meds. Was your experience the same? how did it work out for you and your son?


Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

24/7 helpline