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… 

Conditions commonly misdiagnosed as epilepsy… 

A moment of unresponsiveness — the inability to recall what just happened…convulsions or jerking movements…sudden stiffness of the body.

These are classic symptoms of an epilepsy seizure — triggered by abnormal electrical impulses in the brain.

And while these symptoms may indicate epilepsy, other brain abnormalities or injuries could also lead to seizures.

Having a seizure doesn’t automatically mean you have epilepsy.  And without testing, the diagnosis – or misdiagnosis – can be pretty scary.

There are loads of conditions that have symptoms similar to epilepsy. 

Here are the most common…

Conditions commonly misdiagnosed as epilepsy… 

The Target has Moved

We finally got the Keppra ER. Rose had been on it one week when another seizure occurred.
She had been helping her dad pick up sticks. Rose had gotten hot and removed her jacket. She was in the side-by-side with her dad riding to the burn pit.
My sister and I saw it all from the porch. Her comment was,”She can’t do a damn thing can she?”
Rose cannot get hot…or cold…or tired..or physically active… REALLY there is no pattern at all. Only random seizures.


We added 50 mg more of Xcopri.

Thirty years of trying. Still trying.

SEIZURE MAMA/ FLOWER

Still Waiting for the Right Drug

You will not hear blaming nor shaming from me. Doctors are humans. They hit bumps in the road.
A big bump is grief. That is where our favorite neurologist is. I hope she has back-up to help her through this rough patch.
There have been communication issues and delays. This has lead to no drug change even one month after Rose’s seizure in April.
She had another seizure on Mother’s Day yesterday. She has a bump on the back of her head. Rose has been in bed all day.
We are still waiting to hear from the pharmacy Maybe a new perscription has been called in? I will get Rose to check when she wakes up.
This life is hard on all of us. Be as patient and as kind as you can but also be tenacious about getting help.

Seizure Mama / Flower Roberts