Officially Off Keppra: Update

As of now, Rach is officially off Keppra but is still struggling. She still hasn't had a seizure free day since June 18, 2022. We were really hoping that after the Keppra got out of her system she would go back to where she was before they tried to change medications, but sadly that's not happening.

Rach is better than she was while on the Keppra but she is still having between 30-40 larger myoclonics a week, and that's on her regular dose of Depakote and taking a very small dose of Klonopin. Before all this started she was having between 30-60 smaller myoclonics a month. I'm so confused and can't get any answers.

The doctor is now saying she's drug resistant and that Depakote is the only thing that will work for her, even though it's causing side effects and not helping her be seizure free. I don't understand why he's just giving up on her. He isn't just a doctor, or a neurologist, he's an epilepsy SPECIALIST!!! He should know other things we could try but he's just quitting. 

I don't quit so I will be looking for another new doctor but I have to admit right now I'm tired… Because the doctors just don't seem to care what happens to her and watching her have as many seizures in a week as she used to have in a month is just hard. I'm starting to feel like I'll never find a doctor that will actually help her like her first doctor did, when she was little. 

I also realize that she is having smaller seizures, and that there are some people that have multiple tonic-clonic seizures a day. I am thankful that right now hers are smaller but my fear is about what is coming. Are the seizures just going to keep getting longer and more forceful, are they going to turn to tonic-clonics? 

My heart breaks for each and every person that has to fight harder epilepsy battles. 

When she was on the Keppra she started to get so depressed, tired, and just so unlike herself. At first I wondered, is it just the major increase in seizure activity that's causing it, or is it side effects from the medicine, or a mix? 

After being off the Keppra she is more like her old self but she still requires way more sleep than she used to, she's easy to get depressed and of course she's still having more seizures than she used to.

If anyone is reading any of my posts I would love it if you could comment, especially if you or a loved one tried to change medications and it made it worse instead of better.