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
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
Other Epilepsy Blogs
Hard Truths
Things are better now, but Rose has been through another rough period. She has been transitioning onto a new medication as she slowly goes down on two others.
She experienced a seizure cluster over the holidays. This proves that the PFO/ hole in her heart was not the cause of her seizures. This was a long shot hope, but of course we were disappointed. It is tough hoping for an end and getting another beginning instead.
This mindset has set us up to experience crushing blows. Epilepsy rarely leaves for good, enjoy its absences.
The second blow was that Rose fell and broke her collarbone in the bathroom during a seizure. She had surgery to reset the bone and stabilize it with a plate and five screws. She is in a sling for the next few months.
This sounds like a terrible ordeal, but as you probably know, when you are going through events like this your focus is on surviving the moments.
Rose has pushed through like the champ that she is. PT comes next. I will be her driver for the coming months.
The drug transition backed up a step until further notice.
Rose’s starting a career in disaster management has been postponed again. She is such a seasoned survivor. When she finally finds her niche, she will be an asset to her profession.
Rose has grit. We are proud of her strength and resilience.
Stay strong,
Seizure Mama
Approaching the Holidays
It is time to prepare for extra excitement, less sleep and unfamiliar foods.
Be mindful of how activities affect well- being.
Our rules are NO RED FOOD and no late nights.
Not many activities are worth increasing a risk of a seizure.
Rose did have her first seizure since the stroke in September 2022. This means that the PFO was not to blame. We are disappointed but taking it in stride.
I will be Rose’s uber/taxi again. We hope she will start her career in a city near a college so that transportation will not be an issue anymore.
I will include a few links of advice for surviving the holidays that I have shared in the past.
HAPPY HOLIDAYS from Seizure Mama and Rose
Seizure Mama and Rose 