Reposted Chapter 7: The First Neurologist

Rose’s first visit to a neurologist was months after her first officially epileptic seizure. During the previous months she had tried one drug that failed and was on a second that was prescribed by her pediatrician. Many tests had been run including an electroencephalogram(EEG). She had experienced a second big seizure. We were anxious to learn everything we could from this appointment.
Dr. T’s diagnosis was complex partial epilepsy. This meant that Rose’s seizures started in a certain place in her brain and then generalized to a full seizure know as grand mal or tonic clonic. This made sense to us because her febrile seizures started with chin twitching. Rose referred to these as a “tornado in her mouth.” She could not speak during these episodes, but she could point to her mouth. That little aura served as a warning that was so helpful in those early days. The “tornado” aura soon disappeared, so that we were all surprised by Rose falling to the floor.
Since her seizures were lengthy, Dr.T advised us to get CPR training. She recommended that we call 911 for any seizure lasting more than five minutes. We knew that longer seizures meant danger to her brain and her life. Her dad, brother and I vigilantly watched her, but since Rose was a very active little girl, this was not easy. Our family started tag-teaming “Rose watch” duty. She always stayed within earshot of the person responsible for her.We made sure someone was always nearby and alert.
The neurologist evaluated Rose physically and mentally with simple tests. She was extremely bright and was evaluated as entry-level first grade, although she was just entering her last year of preschool. Dr.T instructed us to watch for developmental backsliding and side effects involving Rose’s gums. After our experience with her first drug 1T we knew that such changes were plausible. We hoped that this second drug would do its job without the side effects.
The plan was to stay on drug 2D for three years and then slowly wean down and off if no more seizures occurred. We were glad to hear that these childhood seizures might eventually diminish. Our new goal was three seizure-free years.
We jumped through all the seizure-prevention hoops. Rose took all medications on time. She was encouraged to take afternoon naps even if it was just quiet time in her bed. We diligently watched for fevers and treated each immediately with a red or pink over-the-counter non-steroidal anti-inflammatory drug(NSAID).

Seizure Mama speaks to parents:

The term SUDEP(Sudden Unexplained Death from Epilepsy) was not coined at this point. We knew that during Rose’s first long seizure her heart may have stopped. We knew that the longer and stronger the seizures were, the more dangerous and life-threatening they were. This was always in the back of our minds. It is still in the back of our minds. Rose is twenty-six years old and away at college, but that fear still remains here. You must go on with your life despite this threat. Uncertainty is present in every life; you just got yourself a big ol’ dose of it to hide somewhere.

THEN and NOW will be posted on Wednesday, June 16, 2021.

Mama has a lot to say about this. Whew!

Reposted Chapter 1: Hot Diaper

1 Hot Diaper

The warning came in the form of a hot diaper. I was sitting at the kitchen table with Rose on my lap. I felt extreme heat radiating across my thighs. I thought I had spilled a cup of hot coffee into my chair, but there was no coffee near me, only squirming and fussy Rose.
When I figured out that the heat was coming from her diaper, I panicked. How could her pee be that hot? All I could think of was getting her to her pediatrician. I knew the fever had to be really high for her urine too be this hot.
I grabbed Rose’s diaper bag along with my purse and headed out the door. I drove straight to the doctor’s office even though I knew it was their lunchtime. I pulled our van into the parking lot facing the door of the office. I paced back and forth outside the open van door while Rose sat quietly in her car seat. The nurse appeared to unlock the door. I removed Rose from her seat and hurried toward the nurse. I quickly explained why we were there without an appointment.
It was a relief to be ushered into the office and down the hallway toward the examination rooms. We stopped in the alcove where vitals were taken before going into a room. As the nurse put the thermometer in Rose’s ear, Rose stiffened. Her head tilted back and her eyes rolled up in her head. She was twitching and twisting so strongly that I could barely keep her in my arms. I screamed the doctor’s name. “She’s having a seizure!” I heard myself yell.
The doctor appeared beside us and cradled Rose’s head as we moved as a group into the nearest room. Rose was still jerking as we gingerly placed her on the padded examination table. Then she became eerily still and ashen. Was Rose still in there? I held my breath and waited for a movement or sound, some sign that this was over and Rose was back.
The doctor stayed with us, silently administering acetaminophen rectally. He sponged down Rose’s arms and legs with cloths wet with tepid water. Rose began to squirm. I remember taking a deep breath. She stirred some more, then looked around and sat up.
The doctor left to see other patients while I sat in the chair holding Rose. I was stunned at what had just taken place. Rose eventually got down on the floor to play with the toys on the rug as if nothing had happened. I couldn’t take my eyes off of her.
I had never seen a seizure in person before. I didn’t know anything about childhood seizures. Mama had some serious learning to do. This was not in all those parenting books, or maybe I had skipped those parts.

Seizure Mama speaks to parents:

After the shock wore off, I played the terrible parent game called “SECOND GUESSING YOURSELF.” If you have never played a form of this game, go on to the next story. The rest of you, here we go.

This form of the game is called “What if I had..?” It involves a kind of scientific twist like forming an if/then hypothesis and guessing the various outcomes. In the game you get to be the cause of every calamity. It’s a great game to play at night, in the dark, when you should be getting some much-needed rest.

I will demonstrate.

  1. IF I had changed Rose’s diaper and given her a cool drink instead of rushing to the doctor’s office, THEN she might have cooled off and never had that seizure.
  2. IF I had changed Rose’s diaper and clothes to a cooler outfit, THEN…
  3. IF I had given Rose a dose of an NSAID(non-steroidal anti-inflammatory)drug and a cool drink, THEN…

The possibilities of these variations are endless. You can lie awake and play all night if you wish.

What is the point of this game? Blame of course. You are in charge of your world, so this seizure must be your fault! I know, that sounds crazy right? Then quit thinking that way about yourself. Bad things happen. Maybe things could have been done differently. Maybe there would have been a different outcome. But you don’t know that. So when you catch yourself playing this terrible game, pat your tired self on the back and roll over and get some sleep.

Hot Diaper: THEN and NOW will be posted on Wednesday, May 5

Dear Parents: Then and Now

I wrote the letter to parents last. I wanted any parent who picked up this book to immediately sense empathy. I wanted them to know that we as parents recorded our experiences honestly and even ignorantly. We did not have all the answers. Nobody did.

I wanted to send a message of hope to anyone desperate and scared enough to read a book with the words seizure and epilepsy on the front cover. I hoped our stories to be like a remote friend that had been where the reader was, having conversations about our common experiences.

This is not pleasure reading, it is desperate, panicked reading. I remember when I started looking for anything that might help us. We were grasping for any straws that might lead to a better treatment. No drugs had worked. We had many side effects, but no progress.

I also wanted to let the parents know that a cure may not be in the cards. This was a giant pill for us to swallow. We kept searching for a magic drug only to discover there were bad drugs and worse drugs and possibly no drug that would control Rose’s seizures. Our search for an effective combination took twenty years.

We were fortunate to find the right treatment only because we never stopped searching and we had a neurologist who refused to give up on Rose. If you have not found the right neurologist, keep searching. Giving up gets you nowhere.

This may take over your life for a while. Save a tiny part separate. For me, it was my garden. It was always waiting for me to shed my role as Seizure Mama and return to being the Flower. My garden has saved my soul and sanity over and over again when everything else fell apart.

Get yourself a little life raft to hold on to and keep you busy during the storms. A purposeful hobby that your troubled mind can escape to., to take your thoughts somewhere else besides epilepsy. I have sewn hundred of masks through the pandemic to curb my fears. I could not stop the virus, but I could help protect people I knew from getting it.

I want to highlight that your role as a parent is a supporting role. You do props and costumes and stay behind the curtain. You do not have epilepsy, your child does. Make them face it. Make them handle it. Make them own it.

They will need every scrap of strength and perseverance to get through this life with epilepsy. They must practice being tenacious and tough. They must develop their superpower of going it alone and fighting their own battles.

Getting back up is the tough part, but that is when the magic happens.

Seizure Mama

Before She Leaves

I am trying REALLY hard to finish this book about my daughter’s

twenty-four year journey with epilepsy before she leaves

to go off to college.

I am SOOOOOO proud of her.

I must finish this book before she leaves,

because I fear that reliving her story while she is away from home will make me afraid.

We have been tethered together for these twenty-four years.

Her being gone will be a HUGE adjustment for Seizure Mama.

I need some encouragement.

Especially on days when I don’t want to send myself “back there” emotionally.

I know there is a mama out there

who needs my story to help her get through her own journey.

I am trying to finish for both of us.

Hang in there Mama!

I’m coming.

SEIZURE MAMA