Category: Uncategorized

Disagreements about Parenting

Rose’s dad and I have been parenting two children for almost 35 years. We have mostly agreed on the proper way to parent Rose’s older brother. We do not see eye-to-eye when parenting Rose.


Rose’s dad is very protective of her. Not just because of her epilepsy, but because she is female. I want Rose to be a strong woman regardless of her condition. I do not want her babied and enabled. She needs to carry her own weight, seizures and all. Our family has to pause and discuss this over and over.


This past weekend we went on a trip. When it came time to clean up and pack, Rose retreated to her room. I had to insist that she help in preparations for our leaving instead of “staying out of the way” while we did all the work.


I am tired of feeling like the bad guy because I refuse to let her be slack and not do her share. Who will pull her weight when her dad and I are too old or sick to do it. I do not intend to leave a spoiled slacker to the care of her brother. We have created this problem and we need to fix it.


If Rose can do cooking and cleaning then she should do these chores. She needs to be as independent as possible. She needs to get in the habit of taking care of herself and her surroundings.


Her dad and I are not getting any younger. I am frustrated by our different expectations of her responsibilities, especially since I am the person who is with her most of the time.


She is a Daddy’s Girl. He is much kinder than I am. I am usually too tired to be sweet.Thirty two years of almost constant parenting has left me weary.


I hope this new drug combo keeps improving Rose’s seizure control and energy level. It will be a relief when she can drive again.


Bad, Tired Seizure Mama

Good Changes

I know any change in medication is scary, but sometimes the unknown is better than the certain which includes seizures and side effects.

Rose is more active, more talkative and has dropped 40 pounds with no new activities other than spending more time out of bed.

She has gone down two steps of Xcopri and gone up two steps of Onfi.

No seizures.

I almost ended that sentence with “yet.” We have some habits to break.

Be strong. You are all ready brave as hell.

SEIZURE MAMA/ FLOWER ROBERTS

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