Author: Flower Roberts

seizuremamaandrose.org

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

New Strategy Needed

I apologize for my absence. Rose is still having occasional seizures. This means no driving. She has not had any more injuries. Her last fall was broken by a chair which made a hole in the sheet rock behind it. I would much rather have anything damaged besides Rose.

She will be staying on her same dose of XCopri, but will change to the extended release form of Keppra. This is why I am posting today.

I went to pick up the ER form of Keppra yesterday, but the pharmacy filled it with the GENERIC form of that drug. This is NOT THE SAME as brand name.

If I had accepted this form that would be considered a change in two factors instead of one which would muddle the results.

The points here: 1. GENERIC is not the same as BRAND NAME 2. ONLY CHANGE ONE thing at a time during transitions if possible. 3. Every seizure restarts the clock for a change in dosage (and driving.)

HANG TOUGH MOMS

FLOWER

Rose is Up and Out

Rose has finally reached her target dose of the new medication. This transition has taken 19 months due to complications.

She is slowly emerging from the fog. We are so happy to see glimpses of our old Rose.

We went for a hike to Daffodil Hill last week. It felt good to be out and about with my young explorer.

We are grateful and hopeful.

Mama Flower

Depending on a New Dose

We are going up on the latest drug twice in the coming weeks. We hope the higher doses stop this cluster and resets the seizure clock.


I am sure you have been in this same situation.

Holding our breath. Keeping our fingers crossed. Waiting…hoping…

The fear is here.

Waiting for the sounds of falls is an old habit I have not missed.


We need Rose to be safe. We need to relax.

That’s where we are.

MAMA/ FLOWER