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.

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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.

 

 

 

An Enlightening Epilepsy Memoir

I have purchased seven more epilepsy books.

I will be sharing my thoughts on each after I read it.

The first is The Sacred Disease; My Life with Epilepsy by Kristin Seaborg, M.D.

I found this to be insightful and helpful.

The memoir follows Kristin’s life from a high fever and seizure as a toddler to adulthood.

I am amazed at her tenaciousness and fortitude.

Kristin finished medical school and gave birth to three children while struggling through trials of many failed medicines and a brain surgery.

She is honest about her feelings and frustrations throughout the whole process.

This book will be helpful to any person going through decades of uncontrolled epilepsy, especially young women of child-bearing age.

I am very grateful to Kristin Seaborg for sharing her story.

Seizure Mama

 

I have Seen that Elephant

I have seen that elephant.

The one that nobody wanted to acknowledge.

The one everyone is now talking about.

I saw it over two decades ago.

In my carport.

I will never forget it.

Its name is SUDEP.

I chased it away by beating on Rose’s back.

I thought she had aspirated vomit.

I threw her four-year-old little body across my knees

and beat on her back. It was a hard beating. I was afraid.

She was blue. She was not breathing. Was she dead?

Her seizure had marched across her whole body.

That seizure parade took over 45 minutes.

The elephant came at the end, instead of Santa or a firetruck.

When I laid her on the floor of my van to start CPR,

a deep breath entered Rose’s chest.

The elephant left us.

That was her first ever non-febrile seizure.

The elephant was Epilepsy’s welcoming committee.

Now everybody knows to look out for it.

Damn elephant!

Seizure Mama

Epilepsy Again

We thought we were done…but we were wrong.

Story 13:

Rose made it three years without a seizure. An EEG(electroencephalogram)was done. It was normal. She was weaned off of drug 3S during the summer. She grew taller, quicker, and smarter. We felt epilepsy was behind us. We believed the seizures were due to all those ear infections and fevers. Rose was growing and thriving. We were all relieved.
Rose started third grade without much worry. Everyone involved with her care knew her history. As a precaution, Rose’s medical information was shared with her new teacher. This young woman was very funny and enthusiastic. Rose’s classroom was near the office. Rose was happy.
We were all getting into our own grooves. Our lingering fear had loosened its hold on our family. I restarted my garden art business and began scheduling shows. My son was now in middle school leaving Rose at the elementary school without her big brother. No worries.
In mid- November, I had a two-day art show in a neighboring town about forty-five minutes from Rose’s school. Anytime I was away from Rose I wore a beeper and carried a bag phone. I can confidently say that her father and I, both at once, had not been this far from Rose since her diagnosis five years ago. Anytime I was away from her I wore a beeper and carried a bag phone.
The week of the show, Rose got another ear infection. She had hoped to go to her first sleepover at a friend’s house just across the road from our home. I was preparing for the show. Everyone was busy, too busy.
We kept Rose out of school on Thursday to recuperate and rest. She seemed to feel better. Friday morning was frantic. I gave Rose some over-the-counter NSAIDs(non-steroidal anti-inflammatory drug) and her antibiotics. I also sprayed her nose with a sinus spray as her ear specialist had recommended. We thought we had covered all the bases,but gut was still screaming. This was too much at once; the two-day show, the sleepover and especially being far from Rose.
My husband and I delivered our two children to their separate schools. Then we headed to the town of the art show in separate vehicles. He was to help me unload my heavy pieces into my booth and immediately return home. As we were unloading my garden art, my beeper went off. I looked at the tiny screen. It displayed the number of Rose’s school with a 911 at the end. This was our agreed-upon signal to drop everything and run. I am so thankful we had this signal in place. I explained to the artists in the booth beside me that we had a medical emergency. They assured me that they would pile my art under the table and cover it. We jumped into our truck and my husband drove as I called the school.
Our friend in the office answered the phone. He said “It’s Rose. Get here quick.” I explained that we were headed up the interstate, but were forty minutes away. Our hazard lights were on and I was waving a white sheet of paper in the windshield. Still some people refused to pull over into the right lane. At one point we passed in the grass and lost a hubcap. The beeper kept going off. The calls kept coming: “What hospital do we take her to?” “How far away are you now?”

My one question was ”Is she still breathing?”

Seizure Mama speaks to parents:

Let’s play a different version of the terrible game we parents play, “Second Guess Yourself.” Only this time let’s change it from ‘What if I had…’ to “What if I had NOT…?”

Examining the events described above, what if I had NOT…

1. …let Rose’s teacher know that she had epilepsy.
2. …set up an alert system including beeper and phone. (This occurred before cell phones.)
3. …left an emergency bag in the office with emergency medications in it?

If I had chosen to hide Rose’s seizures to avoid the stigma, would she still be here?