Seizure Mama and Rose: An Epilepsy Memoir

By Flower Roberts

Mother and daughter team up in blog and book to help families manage epilepsy.

• Language: English
• Publisher: Flower Roberts
• Release date: Jan 28, 2020
• ISBN: 9780463603710

Flower Roberts

Author Flower Roberts is an accomplished biologist, artist, writer, teacher, gardener and mother. This is her first memoir, and encourages anyone coping with epilepsy to read and share her work.

Book preview

1 Hot Diaper

The warning came in the form of a hot diaper. I sat 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 came 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 to 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 still jerked 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.

2 Fevers and Seizures

Rose had many ear infections that were usually accompanied by fevers. Unfortunately, these fevers sometimes caused more febrile (with fever) seizures. We were vigilant about taking her temperature anytime she was sick. If her temperature was elevated, we gave her a children’s liquid form of an NSAID (non-steroidal anti-inflammatory drugs). We tried diligently to prevent her fevers from getting high enough to possibly cause a seizure. We attributed her problem to a faulty thermostat. No fevers, would mean no seizures… we thought.

Over the next three years, after her initial seizure in the pediatrician’s office, Rose had eleven more febrile seizures. These were always scary. It seemed as though we just couldn’t prevent them even though we tried to intervene with over-the-counter medications.

We began to suspect that there was another cause of these events than just fevers.

I began wondering if these seizures originated from a source that was always present, not just something related to or caused by fever and illness. Was there something in her brain causing these? Maybe a lesion, or tumor, or chemical imbalance? When would this end? All children get sick, but most don’t have seizures accompanying illnesses.

I began to feel that the cause lurked somewhere in Rose, waiting until she was weakened. I suspected that this was no visitor that showed up with illnesses and fevers; this was a resident. I constantly watched for flushed skin and chin twitches.

I did some research. I read all about febrile seizures. No one mentioned the word epilepsy. It crossed my mind, but not my lips. Not my child. It was these ear infections. If we could get them under control, things would be fine. An Ear, Nose and Throat-specialist, that’s what we needed. Get some tubes in those ears so they could drain, the infections would clear, the fevers would stop. Voila!

Seizure Mama speaks to parents:

Later on there were some suspicious incidents that did not involve fevers. Rose referred to them as tornadoes in her mouth. I did not know anything about partial seizures. I had never researched epilepsy before. I did not want it to be epilepsy, so I ignored some signs. That’s called denial. Would my being more proactive have made any difference? No one can know. I did the best I could with what I knew at the time. When there were undeniable signs of something more, I jumped into action. When the doctor’s diagnosis was febrile seizures, nothing countered that. I am not one to borrow trouble.

3 The Big One

Seizure number thirteen was different. Rose was four years and three months old. Her first febrile seizure had occurred when she was eighteen months old. All her seizures thus far had been accompanied with illness and fever. This one was different. There was no fever. There was no illness.

Rose was eating a brownie while sitting at her place at the table. Her eight-year-old brother commented that her mouth was too full. I looked over to see Rose holding a napkin in front of her face. I pulled it down to see chocolate drool leaking from the side of her mouth. Her chin quivered. I leaned Rose over to the side to remove the chewed up brownie from her mouth. By now, her eyes were blinking. I carried her to the nearby couch and placed her on her side. She tried to sit back up and pointed to the bathroom. I carried her there, thinking she might need to vomit. Her arms went out stiff with her hands bent down at the wrists.

Instead of entering the bathroom, I turned and carried her to my bedroom. The room with the phone.

This was not the usual seizure.

I dialed her pediatrician’s number and got his partner who was on call. I described what was happening to Rose. By this time her knees were bent up and her lips were blue. The doctor said if the seizure kept progressing, she may stop breathing. Her torso was now tense and writhing. She was in a twisting knot and turning blue.

When the doctor instructed me to call an ambulance, I responded, They can’t find us. His emphatic reply was, Get her to a hospital! I hung up the phone and picked up my blue, baby girl. I carried her up the steps to the carport. As I strapped her into her seat, she vomited explosively. Then she slumped over and became still. I thought she had aspirated vomit and couldn’t breathe. I unbuckled her seatbelt and dragged her limp body across my thighs and beat on her back. Nothing happened.

We had a bag phone back then. I got it out, unzipped it and instructed her brother to hold it as high as possible to get better reception. I dialed 911. What was my emergency? Where was I? How old was the patient? There were too many questions. I had to describe where our driveway was because there was no street sign. I had to tell how to open our locked gate to get into the driveway. In the country, out in the woods, no address, no neighbors. I talked in words, but my mind prayed, Give her back. Give her back.

Finally, the 911 operator began telling me how to help Rose. She was still and blue. Put her on the floor of the van, the dispatcher said. "Lay her flat