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
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
Written by a Neurologist with Epilepsy
Books for Us by Us
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
Do Not Postpone Your Life
Will this ever be over?
I have asked for thirty years.
It is best not to count on a cure.
I hope better treatments and a cure comes,
but we cannot wait for that.
We are living now. Trying new drugs.
Transitioning and seizing.
No longer driving.
Time is passing.
Our lives are going forward with epilepsy.
Waiting for a cure is waisting valuable time.
Do not postpone your life.
Seizure Mama/ Flower
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Hard Truths
