Weaning

@emilyjjj
I'd say if the seizures were controlled and now the seizures are back it's most likely due to the Keppra blood level dropping below therapeutic levels.
If she was having active seizures why is her medication not being replaced with another? How old is your daughter. If she was seizure free on Keppra, why is it being discontinued? Was she having side effect issues?
Auras are focal aware seizures. Did her seizures ever generalize into focal impaired or tonic clonic seizures.
Take care,
Jake

Hi @emilyjjj
I do very much agree with @jakedduck1. It seems that your daughter is having those auras from the weaning-off process.
Was your daughter 100% seizure-free before weaning off Keppra? How long has your daughter been in this weaning-off process already? What did the doctor say when you have reported those auras she has been having?
I did for example go through a process of weaning off from Vimpat to CBD/Epidiolex and this took a few months. My doctor at that time was very careful and did it slowly to avoid seizures. A friend of mine whose son has epilepsy has started to do this process. But then he had his first seizure and the doctor stopped this process immediately, increasing a bit the dosage of his medication (below the dosage he was taking before starting this process), and the seizures stopped, and he stayed at this new dosage.
Have a good day!
Chris (Santosha)

We are not sure if these are real auras or not. It’ll just be tgat she experiences a smell or her ear hurts and she thinks about seizures. She’s 12 and has been on a very small amount of Keppra for four years. We are doing an extremely slow wean (.1 ml drop every two weeks) for about 5 months. My question is could the wean process itself be making her feel weird things but it doesn’t mean her seizures are returning? Her Dr recommended the wean bec 80 percent of kids or something grow out of benign Rolandic seizures. Before starting Keppra her leg was possibly involved in one seizure but we believe all others were limited to one side of her face.

Yes seizures were totally controlled for four years and emphasizing she had not had a seizure recurrence since starting the slow wean but she’s still on Keppra just less

Sorry to be clear she is not weaning off Keppra in order to start another med. The wean is because often children outgrow benign Rolandic seizures. And she’s done three years of overnight e e gs in a row which have been normal (no spikes) so this is a trial.

To see if she’s ready to come off all anti seizure drugs.

@emilyjjj
The only time I've heard of the weaning process itself causing seizure symptoms is when the level dropped below it's therapeutic range, allowing the previous seizure activity to once more manifest itself. Can you explain in more detail what she tastes, sees, feels hears or smells? Considering her symptoms I believe I'd increase the Keppra dose or reinstate the previous dose and take a more cautious approach.
Take care,
Jake

Hi @emilyjjj
Thank you for the additional information you have shared with us.
Great that the weaning-off process has been carried out with time and care.
When younger my seizures would start with a taste in my mouth and smell in my nose, learning later that this was the aura.
Have you reported those symptoms to your daughter's doctor? I would talk to him or her before giving continuity to more decreases in your daughter's Keppra dosage.
Wishing that your daughter stays off meds and without seizures!
Chris (Santosha)

I don’t have a lot of information beyond she feels weird or she has a certain smell and it reminds her of “something”. Ugh.

This last time it happened about a week after we dropped it by .1. Nothing since.