Adding Dates to our Stories

I want to make sure that folks who find us know that these events are NOT in real-time.

Our book is to give others hope NOT make them sad.

From now on, I will include a month and year with each story.

Rose is doing GREAT at the university and has decided to triple major.

We are pleased and proud of her.

Flower Roberts

 

Story # 21: The Painful Appointment (May, 2002)

We had felt good about the first neurologist in the beginning. The doctor was observant and thoughtful. We had previously left each of our appointments with several written plans of action in case the first option did not bring the results we hoped for. If plan ‘A’ did not work, we also had plans ‘B’ and ‘C’ if needed. Now we felt like Rose was part of a chaotic experiment without planned strategies or goals.
Rose had a long and strong seizure the day before this appointment. She slept on the way to the doctor’s office and wouldn’t hold her head up during the visit. The doctor seemed not to notice Rose’s lethargic condition. Instead I was scolded for the numerous calls I had made to the nurses. The doctor mentioned wanting another EEG(electroencephalogram) and mentioned the possibility of VNS(vagus nerve stimulator) placement.
We were taken aback by these suggestions. We thought we had come for a much needed plan for our next trials with different medications. Instead it seemed that we were at the end of the medication regimen and headed for surgery. Our instructions were to stay on drugs 3S, 4L and 5Z. Stay on these three drugs? What we were doing was not working. Why were we not doing something different?
Here was our nine year old daughter slumped down in a chair, pale and unresponsive and we were supposed to continue on with these same drugs and dosages. We left the appointment and went downstairs in the building to eat lunch at one of Rose’s favorite restaurants. Rose’s hand was so shaky that she couldn’t use a fork. I had to feed her the slaw. I was feeding my nine-year-old because she could not feed herself, but there would be no change in her treatment? This was unacceptable and infuriating.
We all went back upstairs to the doctor’s reception area. I was so shaken that I could barely speak as I explained to the receptionist why we were back. We had to wait until all the other families finished their appointments before the lunch break. It was interesting watching the other struggling families while we waited. The parents were anxious while the children were bored and restless. One father was irate and loud about a mistake that was made by the receptionist.
Finally we got to speak with the doctor again, and before we left we had a new plan. I had the doctor write it down. I still have the paper. Rose was to go down on 4L, off of drug 3S go up on drug 5Z and add a new drug 6K. Was this a plan or a punishment? This was like playing a game of roulette using strong drugs on a young child. Was this new plan better than no change? It gets worse from here.

Seizure Mama speaks to parents:

You must be politely proactive. Although different dosages and a new drug made things worse in this circumstance, sticking with the same regimen would have prolonged the process of finding the right combination. Months later we concluded that 4L was the drug from hell. We never found the therapeutic dose. The effective window was so small that we shot past it and Rose eventually went toxic on this drug combination.
Keep good records and write down everything. Things got so bad that I couldn’t think straight. I was a wreck during these months. We felt damned. Maybe you know how that feels. God help us all.

Another Epilepsy Book

Seized: Temporal Lobe Epilepsy as a Medical, Historical and Artistic Phenomenon by Eve La Plante was a fascinating read. I found myself talking about it to my family and friends.

If you or someone you know has TLE (Temporal Lobe Epilepsy), I think you will be enlightened by this book.

It is divided up well, so that you can chose whether you are reading it for intervention information or just to learn about the history of this type of epilepsy.

What I found so informative was how the research on TLE has brought together the psychological and physiological disciplines to approach many dysfunctions holistically as both physical and personality disorders.

Bringing together neurology and psychology gives better understanding of people suffering from diseases that were previously under the umbrella of mental illness.

I will add, if you are deep in the throes of suffering health issues and seizures from TLE, this may be more than you want to know. You may benefit from reading the case study part.

If you are trying to understand epilepsy, this is a great resource. I appreciate Eve LaPlante for doing such a thorough job of researching doctors, patients and medical history for this book.

Flower Roberts

That Last Day

On the last day that Rose was home we went swimming in the lake.

We took a long boat ride upriver.

We grilled barbecued ribs and onions.

We tried to fit a whole summer into that last day.

We wanted her to remember home and fun and love

while she was away from us at school.

I am missing my Rose today, but I am super proud of her.

Someday she will be trained to help others during disasters.

She knows all about fear and emergencies.

Who better to be on the front lines than my Rose?

Seizure Mama

Drug Changes Change Rose

Story # 20:

Things fell apart. Drug 4L had been added to drug 3S after the seizures during the holidays. At first drug 4L made Rose mean. Getting her schoolwork done was a battle. Either she would not or could not concentrate. Were these changes due to the new drug, the new homebound situation, or the seizures? Her ear infections continued, so antibiotics were frequently in the mix.
We kept records of all her drug dosages and combinations, along with seizure descriptions on a chart. We couldn’t keep all of it straight unless we wrote it down. The months were a blur of seizures, side effects and sickness. I read books about epilepsy and researched epilepsy drugs and treatments. It was all so confusing. How could we help our Rose if we did not understand this disorder and the effects of its medications? I felt helpless and hopeless. Rose was changing as her drugs changed.
Appointments with the neurologist became very frustrating. The partner of the practice had left, so our doctor was handling a double load of patients. We used to feel like there was a set plan for Rose’s treatment; now it seemed like one long experiment. The doses for drug 4L kept increasing and we saw nothing but side effects. Her seizures became longer and stronger. We must have missed the window of effectiveness for drug 4L. Finally it was dropped and drug 5Z was added to her doses of 3S. Experimenting with the wrong drugs and dosages went on for months. Every few days, Rose would have a long, strong seizure. She would spend a day or two recovering before another seizure knocked her back down. I did not leave her anymore. I was too scared.
Sometimes on the weekends when Rose’s dad was home, Rose’s brother would ride the trails through the woods around our house. I would go with him carrying my camera and a walkie talkie. If a seizure occurred, her dad could call me to come back. I would hike through the woods and allow myself to cry. This was the only time I would leave the house. I walked the paths in our woods relieved to be out of our sad house where the walls kept closing in.
I never let Rose see me cry. We did not want her to see us saddened or scared. We were losing her. Her essence was disappearing. She was a groggy, foggy, tired mess. The drugs were not helping anything. The seizures were wearing her down and the drugs were ruining the time in between them.

Seizure Mama speaks to parents:

I am ashamed to look at the records from these terrible months. Why did we not get a second opinion sooner? Why did we not demand to go to an EMU? The awful reason was that we thought going to the EMU was a big step toward surgery. I had read about the different surgeries that were used to stop seizures. I wanted to give every drug a full chance to work. When I look back at her charts of medication combinations now, I am horrified.
Drug changes were being made frequently and almost in a random fashion. I think the neurologist was on overload and was pushed to try things because of my constant calls and letters. She was seemingly experimenting with various possible remedies.
It took the terrible scare of Rose going toxic for us to decide that enough was enough and seek a second opinion from a different neurologist in a different city. That was a turning point for us. Don’t wait that long.

The Forgotten Fob

We moved Rose back to the university yesterday.

She did all the packing. We just helped load and unload the truck.

Just before we left, as an afterthought, her dad suggested I check the medication drawer.

I did it just to make sure a bottle of medicine had not been inadvertently left behind.

What I found instead made my heart stop.

She had forgotten her fob.

IMG_8323

Her necklace with all her epilepsy information and a fob with emergency pills in it.

This is her lifeline.

(I had to pause while typing this and take a deep breath.)

I took the box with the necklace, tag and fob in it to where she was

and held it out for her to see it.

I told her “If you have a seizure and no one knows what to do you could die.”

She nodded and looked down guiltily. Her response was “I did die.”

“Yes,” I replied “but I saved you. I will not be there next time.”

She has had her helicopter mama all summer. Maybe she just forgot where it was?

Maybe she wants to believe epilepsy has left her.

It is a nice dream.

But she must be prepared for the next seizure, even if there never is one.

This epilepsy belongs to Rose now.

I hope she will not forget the fob again.

Seizure Mama = standing down.

 

 

 

Thinking like a Rose

We named Rose after my sister.

Her nickname is Rose because she seems to come through any situation successfully and unscathed like the saying ” came out smelling like a rose.”

We marvel at the tricks my sister manages…the best seats at a play, the best parking space…

But really it is about attitude. She expects things to turn out well.

She drives to where she wants to park until a space opens up.

She inquires about better seats sweetly and gets them.

She trusts the universe. So does my Rose.

Rose expects people to be their best. She sees their best qualities.

She and my sister both enjoy every situation without reserve or dread.

It’s not self-confidence really, it’s world confidence.

They trust the universe. Call it blessed or good Karma.

They are Roses. I need to think more like a Rose.

Sweet!

Seizure Mama

The Emergency Delivery

Story 16:

Rose was busy playing in our workshop, which has a concrete floor. Her dad and I were both busy with our own art and construction projects. Rose was making something of her own while standing at my workbench. She suddenly seized and fell to the floor between the workbench and the sink. Thankfully there was a large, but dirty, rug under her on the floor.
The first dose of her emergency medication did not stop the seizure. We waited a few minutes and then used the second syringe. Finally the convulsions stopped and she lay still on the floor. Our relief was short-lived. We realized that we now had no more emergency medication and it was a Friday afternoon.
I called our friend at the pharmacy and explained why we needed more of Rose’s emergency medication as soon as possible. Unfortunately,this particular drug was not kept in stock because it was very expensive and had a short lifespan. It also had to be protected from temperature extremes. The pharmacist explained that the drug would have to be ordered and then delivered, which would take time.
He knew, just as we knew, that we may not have that kind of time. We could be in the middle of a status situation with nothing to save Rose. The pharmacist was thinking out loud when he offered that maybe he had some of a “dead girl’s medicine” at the other pharmacy. A dead girl’s medicine? We needed a dead girl’s medicine to save Rose. I was so stunned that I hung up the phone before I started crying.
We knew that Rose’s emergency bag with more medication was in the principal’s office. It was 4:30 on a Friday afternoon, but maybe someone would answer the phone. When I called the school’s office, the assistant principal answered. She and the guidance counselor were there wrapping Christmas gifts for needy children and their families in the community. We told her what we needed and that one of us would immediately come and get the big red bag. She offered to deliver the bag to us, so that we both could stay with Rose.
Here was one good person taking her time to do something helpful. What a blessing. We could relax. The drugs were on their way. Rose would be safe now. What a gift that was.

Seizure Mama speaks to parents:

Saved by the bag again. I cannot stress this enough. You must always be prepared for a seizure. It is the only way your family can carry on responsibly and safely. You have no choice about where the seizures occur, but you can make the choice to always be prepared.

I want to add here that SUDEP or death by seizure will always be in the back of your mind if your child has the tonic clonic/grand mal type of seizures. Hearing the pharmacist offer a dead girl’s medicine, first sent my mind to her poor family and then to the possibility of Rose’s death. No one wants to have these thoughts. There is no point in dwelling on such sadness.

Yes, living with epilepsy is like living with a terrorist or a time bomb. But none of us knows what will happen in the future. Your life is now, with this precious child of yours, so live it now. I call it “nower.” It means the power of now. That’s all anyone has. Live now. Whatever will be, will be.