The Big One: Then and Now

Events occur in life that divide time into before and after. This was one of those.

Before this seizure, there was worry. After this seizure, there was fear. Real fear. Strong fear. The kind of fear that haunts your thoughts and jerks you awake.

My son and I saw the life leaving Rose. The term SUDEP had not been coined yet. Death by seizure was not widely talked about then. Folks still believed in tongue swallowing.

We know what we saw. I have been told that my panicked beating on the back may have served as haphazard CPR. I was aware of nothing but Rose in those long minutes.

I know I am sharing a nightmare with parents who have had their own, so I must be honest. The level of concern in our lives was raised that evening and has never returned to the previous level. We fight the fear every day. Especially me.

Yesterday, I drove Rose to run errands. My current PTSD and pandemic anxiety kept me in my car. I watch the world from a safe distance right now. Rose took longer than expected in both places. My anxiety level rose higher and higher, but I made myself stay in the car. If I went into the store, she would know that my fear for her was stronger than my fear for me. Rose would have been furious.

After this long, first non-febrile seizure we got rescue drugs. Once your child has had a status event, you need to request one of these. First it was a pill that dissolved in her cheek. Later it was a syringe of Diastat. This syringe is expensive and must not get too hot or too cold. I carried it in my big purse for almost twenty years. The drugs saved Rose at least a dozen times.

The Big One occurred in May 1997 and I am still unpacking its effects on our family. This caused a change in our dynamics. We still “circle our wagons” around Rose in times of trouble. We have not been able to protect her from all of life’s hardships, but we can be there for support.

There’s a fine line between being cautious and over-protective. We have crossed it many times. Do not stay on the “helicopter parent” side of that line all the time. Your child will end up weak and co-dependent. This epilepsy parenting is a marathon, not a sprint. You should be running the race with your child, not carrying them. I mean this. I know it is hard to do. You need to fight your fear, so your fragile child can get strong.

Sincerely,

Seizure Mama/Flower Roberts

Reposted Chapter 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 was quivering. 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. I 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 remember responding, “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 was talking in words, but my mind was praying, “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 on her back,” he instructed. “Start CPR,” he ordered. As I was getting ready to follow more instructions, Rose took a deep breath. I was relieved to see the blue in her face fading. Now my prayer was, “Let her be whole.”
I finally took my eyes off her to notice it was raining. I looked at her brother standing as tall as he possibly could, holding the heavy bag phone over his head and shaking.
Then I heard a car approaching. There had been no siren. It was a friend from church who was an EMT First Responder. As I started babbling about what had happened he calmly said,”Go change your clothes. I’ll watch her.” I noticed that I was covered in vomit. I was so relieved to have some help. I rushed back into the house to change my clothes and returned just as the ambulance and Rose’s father arrived.

Seizure Mama speaks to parents:

This event was an actualization of many recurring nightmares.

  1. An emergency alone. No one to help me in my isolated location.
  2. One of my children dying in my arms. My not knowing how to save my own baby.
  3. Calling 911 and having no one answer. Or the answerer did not understand what I needed, where I was, etc.

Yes, this event was a cluster of calamities from my darkest dreams. I will never forget that helpless and hopeless feeling.

Yet I also remember my great relief when I saw Rose’s big breath,the familiar face of a friend coming to the rescue, and my pure relief and gratitude when I was no longer alone.

This was the big-bang-beginning of our journey.

The enemy finally had a name: Epilepsy.

THEN and NOW will be posted on Wednesday May 19

Fevers and Seizures: Then and Now

I would like to add two points to this topic. The first is that we later discovered that red dye #40 was a trigger for Rose’s seizures. We looked back at all the times we tried to prevent febrile seizures by using red, orange, purple and pink NSAIDs(Non-steroidal anti-inflammatory drugs).

There was no way we could backtrack in our records to see if there was a relationship here. There was however, a way to check when red antibiotics were used to see if febrile seizures resulted. I was relieved to find no correlation between the red dye in her liquid antibiotics and the occurrence of febrile seizures. We hope that this was also true of her colorful over-the-counter treatments for fevers.

My second point is that I eventually did research into febrile seizures and read that repeated febrile seizures should be treated like epilepsy. I drove a note, complete with references, to her pediatrician’s office. I did not follow up on this. He may never have gotten the note.

Neither the note nor a reference to it was included in Rose’s records that were eventually sent to a neurologist. I won’t kick myself for this either. If her doctor had put her on anticonvulsant drugs sooner, she would not have had those early years of unimpeded learning. Those first years are very important.

So…Hi,ho! Let it go.

Seizure Mama

Reposted Chapter 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 twelve 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 was lurking 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.

Fevers and Seizures: Then and Now will be posted on Wednesday, May

Follow Rose diaper to dorm room.

https://bookauthority.org/books/new-epilepsy-books

Hot Diaper: Then and Now

I have replayed this memory many times, because it was the beginning. Would my handling it differently have lead us down a different path?

In my mind, I have watched my young-mother-self over and over. Young me panicking and running out of the house with hot little Rose, knowing only that I needed help. A mother and baby alone at home among the woods, down a long driveway, inside a locked gate.

What I see now is insecurity as a mother, fear as a care-giver and and a lack of confidence in handling a new problem. This is the surprise for me. I was a confident biology student and science teacher. Why was motherhood a game-changer?

My answer is that I am a person who has to be over-prepared to feel confident. I had years of training in biology and then additional years as a teacher. I felt prepared, so I was at ease in those roles. I did read books on parenting and talk to other mothers, but I never relaxed when it came to the childcare issues. I always second guessed my decisions, thus the “Blame Game.” Maybe I will be a confident grandmother after all this experience. Ha!

Now that I have had decades to reflect on my mothering skills or lack of skills, I have come to the conclusion that I did my best with the best intentions. No mom could love her children more than I love my two. Even though I could have handled this first seizure in many different ways, I always come back to the same conclusion…

that I am glad this event occurred in the pediatrician’s office where I had a nurse’s and doctor’s assistance for this first of many traumatic seizures.

So… Hi, Ho! Let it go!

Seizure Mama

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

My Plan for the Year

I hope to post a story from our book, Seizure Mama and Rose, on Saturdays and then write a follow-up post mid-week for the next 52 weeks.

This is my “purge project.”

A year from now Rose will graduate and we both will move on with our lives.

I want to know that our struggles and victories are out there for others to find.

This journey has been long. It has made us both strong and fragile.

Do not worry “Other Mothers”, you will know where to find me.

Come along for our twenty-year journey “Diaper to Dorm Room” with me giving my take on things decades later.

Welcome to our lives…

Seizure Mama

Let’s Begin Again

Seizure Mama and Rose; 1994

Join us as we journey from diaper to dorm room.

Dear Parents,
I wish I could claim that this is a “How to” manual for raising a child with epilepsy. It is not. This is the story of raising our daughter Rose. We made many mistakes. Our family did the best we could despite our own fears and ignorance. We were never trained as parents, much less as medical specialist. Our job was to raise Rose, not to cure her. We found the best doctors and tried many medications, but a treatment is not a cure. We did what parents do. We flew by the seat of our pants with our hearts wide open and breaking.
I do not recommend you follow this twisted trail of breadcrumbs that I have left here for you to read. I only hope that you recognize your own struggles among these stories and realize that you are not alone. Someone else has been where you are now, as terrified parent, and survived to tell the tale.
Just remember you do not get to be the superhero in your child’s story.
Yours is a supporting role.
Your child is the star.
When they fall down, you help them up.
Eventually, they will not need your help to get back up.
Getting back up is the important part.
Your job is to get them strong enough to rise on their own.
Then you can stand back with pride and watch them rise.
This is where we are now…
Watching Rose Rise