Author: Flower Roberts

seizuremamaandrose.org

Here We Go Again

Rose will go down on Xcopri and add Onfi back in with Keppra.
Yes folks, this seems backwards, but anywhere is better than where she is now, lethargic, shaky and confused.
She moves from bed to couch to bed.
Today,  we both lay on my bed and listened to the Wicked soundtrack.


We had to delay this latest change… again…due to generic drug instead of brand name Onfi.
What’s a few days out of 32 years.

We play the long game…Rose and I.

I will let you know how it goes.
I never wanted to blog her story in real-time, but here we are.

Seizure Mama and Rose

Medical Quagmire

We went up on Xcopri. Now, Rose’s legs give out. She fell up some steps last week. She has no energy.

Messages through the portal have been answered by the devoted nurse. Nothing is working. We now have both seizures and side effects. Rose cannot be left alone.

We have requested to return to EMU…again to titrate down more quickly and move on to a new drug. She also needs an at-home sleep study.

I just cannot be upbeat anymore. She graduated from college in December 2022 and has not been stable and energetic enough to look for work.

Too bad Rose can’t work for Miss Kitty at the Long Branch Saloon..That is where she spends her afternoons.

Seizure Mama as Debbie Downer

The Four Stages of Seizures – Prodromal, Auras, Ictal and Postictal

Welcome to the world of ictals and postictals.

A world you’re probably familiar with.

The Four Stages of Seizures – Prodromal, Auras, Ictal and Postictal

Unsure of Path

Rose is staying the course a while longer with two more possible increases of Xcopri with same Keppra dose. The plan now is next seizure increase a dose…next seizure increase a dose.
The ultimate goal is to control the seizures.

But what will we have at that point? She is only active around seven hours per day. During this time she watches TV and does a few chores.

Is this a proper life for a 31 year old college graduate? Is this really our only path to no seizures? We will stay on this course until the EEG and sleep study.

Rose stated she did not want anything put in her brain. She has that right.

There have never been easy answers with epilepsy. I just hope there is an answer.

Unsure of our path.

SEIZURE MAMA AND ROSE

The New Plan

Baby steps are needed when changing dosages and medications. If your doctor tries to change many aspects at once, you need to question it. That is simply bad science. Only in an emergency should drastic measires be considered.

The new plan is a higher dose of XCopri in the morning. Nobody likes this BUT one must rule out a drug before damning it.

There will also be a sleep study…also good science. Rose has a careful doctor. We appreciate her thoroughness.

Here we go!

Seizure Mama and Rose

Epilepsy drug side-effects… 

They’re necessary, but not necessarily nice.

And every med has its own side-effects.

Just as different people experience different difficulties.

But here‘s the low-down on some possible side-effects.

Epilepsy drug side-effects…