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
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
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
We are late into the medication transitions of lowering dosages of Keppra and Onfi and going up on XCOPRI.
No seizures.
Rose has been doing Physical Therapy to regain strength after the stroke she experienced last September.
No seizures.
Rose has had Covid this week and is recovering nicely.
No seizures.
HOORAY!
This will be a summer of help and healing for Rose. She will continue Physical Therapy and Grief Counseling. She is also continuing to tweak her seizure medications.
Drugs transitions must be done carefully, one change at a time. The rate of change depends on the drug’s half-life. A longer half-life means slower changes.
Drug K can go down one dose per week. Drug O must go slowly because of its long lingering. Drug X reacts with Drug O, so there is a careful dance between the two.
This transition will take months to complete. There will be pauses to avoid surprises.
Rose will be in the wedding of her friend from pre-school. This is the friend whose parents rushed to the hospital to help Rose during her stroke and then drove to another hospital to stay with her until we arrived. These folks talked Seizure Mama down off the crazy cliff that night. They are family forever.
Rose will walk down the aisle and then sit down. This is so everyone can relax, especially Rose. She trusts neither her body nor her brain. We hope she will gain more confidence as time passes and she gets stronger.
There will be another pause as we take Rose on her graduation celebration vacation. This was postponed due to her heart surgery to fix the PFO(hole) that probably caused the stroke.
So off we go to celebrate our survival. Her brother is joining us. It will be a dream. We will relish every moment.
When we return home there will be more transitions and more therapy. When this healing is complete we hope Rose will be ready to start her career.
Look out world!
MAMA
Seizure Mama and Rose 