I have an Epileptic since I was 7yrs old. Am 62yrs and retired.
Have been on medication for over 35 of those years. I was 27yrs old when I was taken off medications.
During that time I would have myoclonic seizures periodically may be 4 times a year.
Absent seizures started again in my 40s.
Thru all those years that I did not have any clonic tonic seizures.
During that time I did not see a neurologist just a regular M.D. When I turned 48 my tonic clonic seizures came back with a vengeance.
I Have been on medication ever since.
It would take 5 different drugs before one would work without side affects.
That process took at least 10 years.
I realize that child epilepsy can be as they say can go away as they grow up.
Being said for the years that I was off medication I lived a pretty normal life.
During my growing years the medication that I was on (Phenobarbital, Dilantin) slowed down my cognitive ability to learn.
Being said I could not keep up with my peers education ability.
My parents were to embarrassed to tell me when I was younger or just did not take it that there child has a mental disorder.
They should have told me by the time I was 12yrs if not earlier what I suffered from.
A child can feel a lot of guilt leading into a depressed state knowing feeling that your not intelligence enough to be as an equal to there peers.
Depression can and will go into there adult working years.
have a blessed day

It’s possible that your daughter is addicted to the medication. When I was a kid, I on three medications. Dilantin, carbobenzepine and Phenobarbital. Two out of the three meds, I had no trouble weaning off them. The Phenobarbital , on the other hand , my seizures would worsen more than before. Three different times my Dr.’s tried weaning me off. My body or mind just wouldn’t let go. The Dr’s told me the same. That I was addicted to it. Not that I could tell. It wasn’t like being high on Marijuana. I was on that medication for 20 years, before my body was finally able to tolerate, being weaned off it.

Hello! I am new here. My 10yo daughter has been on Briviact, Epidiolex, and Onfi for 2.5 years. She's been seizure free for 2 years and we're now weaning the Briviact. I'm curious to know how the wean went for your daughter? Any side effects or anything?

I’m not just trying to wean her out of the blue lol her doctor said it’s time to try and has given instructions. I was trying to find another family with a child being weaned. Thank you for all of your answers

Every time I was weaned off my AED meds, my Epileptologist would write down instructions, on how much I should wean down on dosages w/ one med, while going up on dosage of the new meds. Every week, the dosages decrease on the meds I’m weaning off and upping the dosages on the new meds.