I know it is only
a matter of time
before I must ride
the Lightning bull
at the Hades Rodeo.
I will be twisted and turned
then thrown to the ground.
I hope that some clown
will stand over me
while I’m down
to save me
from being stomped
before I can get back
up on my feet
at the Hades Rodeo.
Rose’s drug 2D required periodic lab work to check blood levels. She has always been a passive patient. I did not expect her to resist any tests or treatments based on prior experience. So, I was surprised when we had a struggle getting some blood drawn at the local hospital.
We waited in the waiting room to be called. I thumbed through magazines, while Rose sat near the television. When her name was called, I picked her up to head back to a room. She squirmed, so I switched her to my other hip. The lab technician was a middle-aged man. Since she was small, she was positioned lying down on a table for blood to be drawn.
“No, wait!” she said. “But we need to get your labs done. It’s our turn.” said I.
“No, wait! ” she yelled. Rose began to squirm and cry and point at the door.
The man asked if he should tie her down to the table. Now, mama wanted to yell.
I explained that she usually did not resist labs. I also pointed out that if we “tied her to the table today”, we would have trouble just getting her in the room next time. I took Rose back out to the waiting room. I calmly resumed looking at magazines, she went back to the television. I nonchalantly told her to let me know when she was ready to get her labs done.
I kept peeking out from the magazine, watching her. What was different about this time? It was not long before she came and stood beside me. I glanced up from my magazine. “Ready.” she said.
I informed the receptionist at the desk that we were ready to try again. Her name was called. We went back into the room. She lay on the table. The blood was drawn without incident.
As we were walking back through the waiting room to leave, Rose pointed to the television and said, “No more Gilligan.”
She did not mean she wanted to “wait” to get the blood work done. She wanted to go back to the waiting room and finish watching Gilligan’s Island.
Seizure Mama speaks to parents.
All the tests and labs that may be required for treatment of epilepsy may be confusing to your child. You need to put up a good front. They will follow your lead if you act matter-of-fact about the procedures. Discuss what is about to be done. You may even want to draw a picture of the needles and wires. That way they will know what to expect.
I knew that if I let this lab technician tie Rose down to the table this time, that I could not even get her back into a room next time. She would, however, be happy to come back to the lobby to see Gilligan.
Rose’s first visit to a neurologist was two months after her first official epileptic seizure. During the previous weeks she had tried one drug that failed and was on a second. Many tests had been run including an electroencephalogram(EEG). She had experienced a second seizure the month before the visit. 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, grand mal event. This made sense to us because many of her supposedly 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 event was so helpful in those early days. The 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 for more than five minutes. We knew that longer seizures meant danger to her brain and life. We vigilantly watched her. Rose was a very active little girl, so this was not easy. She always stayed within earshot of the person responsible for her. We started tag-teaming back then. Just to make sure someone was always near-by 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 pre-school. Dr.T instructed us to watch for developmental back-sliding and side-effects involving Rose’s gums. After our experience with her first drug 1T, I knew that such changes were plausible. We hoped that this second drug would do its job without side-effects.
The plan was to stay on drug 2D for three years and then wean down and eventually off, if no more seizures occurred. We were glad to hear that this may be a childhood condition which may eventually diminish. I am not sure if that was an accurate assumption. 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 still 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) had not been coined at this point. We knew that during Rose’s first long seizure that 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 is still 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.
Now that we know one of Rose’s triggers is red dye #40, I went back through all her records to see if there was any correlation between her red medications and seizures. I found no correlation for the prescribed medications, such as liquid antibiotics that were red, pink or orange. There is no way for me to track all the colored over-the-counter liquid drugs. As a precaution, we now avoid anything red. Read food labels. Even if the food is not red, pink, orange or purple, it may still contain red dye.
Drug “1T” was our first drug. Now we knew that the cause of the seizures was always in Rose’s brain, not just showing up with fevers. It was a resident, not a guest. We were in a constant state of vigilance. I do not say this lightly. It would be a condition for us that still continued for decades, emergency-ready for twenty-four/seven. Rose nicknamed herself 24/7 because of this. We all tried to play this down, but it was what it was.
With the drug 1T, Rose became more active and hungry. She seemed hyper-emotional compared to her prior happy-go-lucky self. Was this change due to the new drug or an after-effect of the seizure? Her care-free childhood had transformed into a series of tests and medications and worried faces. There was a period of weeks after that long seizure in May that seemed like epilepsy was the center of our universe.
Our family planned a camping trip for mid-June. We hauled the boat and tent to a State Park for a week of fun. Our site was along the shores of a crystal-clear lake. Some friends with a daughter Rose’s age came to visit and spend a day with us out in our pontoon boat. Rose had a lot of fun on this trip. She made her own little play house inside a folded lawn chair. What an adventure.
Her dad and I had discussed what we would do if a seizure occurred during our stay here. We knew where the hospital was. We located the park office. There were officials around who could help, if needed. We made our plans in case of emergency. We had the bag phone. We were cautious, but brave.
During the night on Wednesday, I was awakened by unusual noises and motion beside me in the dark tent. I quickly switched on my flashlight. Rose was seizing. Her face and neck were covered in drool. Her skin looked splotchy. The seizure was short.
I lay back down on my sleeping bag, keeping a hand on Rose. I lay there thinking about what a crazy stupid mother I must be to have my baby here in the middle of nowhere, in a locked campground, in a tent, in the dark. This event was the beginning of one of my paranoid hopes of buying a house across the street from a hospital. That way we would always have medical help close-by.
When Rose awoke the next morning, she was scratching her neck. I pulled up her pajama top. A prickly red rash covered her torso and upper arms. Her lips were swollen. The bag phone was used to call her pediatrician. His diagnosis was that Rose had experienced an allergic reaction to the new drug, 1T.
Camp was broken. The tent was bagged up. Supplies were tossed haphazardly into the pontoon boat and the back of the truck. We headed back to civilization and supposed safety.
We stopped by the doctor’s office then pharmacy on the way home. This drug was not the right one. There were more to choose from. Lots more. Surely the next one would do the trick and stop the seizures without side effects. Seizures had been around for centuries. Surely there was an effective drug to fix this.
Seizure Mama speaks to parents:
A drug is a drug. It is a chemical compound, not a magic wand. It does what it does with the other chemicals in the body. Drugs are not dynamic substances. They work or they don’t. If a drug is not working, move on.
After trying several different drugs, we began to feel obligated to give each new drug more time. Determined to give each more chances than it probably deserved. We were afraid to damn each one for fear there was not a new drug waiting in the wings. Learn their names. Know their half-lives. Keep records of their effects and side-effects. When the evidence shows that the drug is ineffective, move to another or a new combination. Do not linger with a drug failure.
My charts of drugs and dosages, seizures and side-effects gave us confidence to move forward in terms of medications and treatments. It also eliminated “re-inventing the wheel” when we had to change doctors or go to a new clinic for tests.
The title is not a typo.
Yes, gifts from epilepsy.
Falling down over and over again forces you to practice getting up.
Shunning gives you thick skin.
All your friends are true, because the fake ones ditch you.
You get more grit than most people on the planet.
A huge, wide-open heart is acquired.
You get to be an expert at empathy.
You get really good at feeling the fear and doing it anyway.
Make no mistake, epilepsy is a foe not a friend.
It steals your freedom. It robs you of your peace.
But it does give certain gifts, whether you want them or not.
Gee, thanks.
Seizure number thirteen made it official. Rose was four years and three months old. Her first febrile seizure was 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. 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 told me that if the seizure kept progressing that she may stop breathing. Her torso was now tense and writhing. She was in a twisting knot and turning blue. I was instructed to call an ambulance.
I remember responding, “They can’t find us.” His reply was to get her to a hospital, fast. I hung up the phone and picked up my blue, little girl. I carried her up the steps to the carport. As I strapped her into her seat, there was an explosive vomit. Then she slumped over and became still. I thought she had aspirated vomit and couldn’t breathe. I unbuckled her seat belt 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 gate to get into the driveway. In the country, out in the woods, no address, no neighbors. I was talking words, but my mind was praying, “Give her back. Give her back.”
Finally, I was being told 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 of her to notice that it was raining. I looked over at her brother who 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.” For the first time, 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 her father arrived.
Seizure Mama speaks to parents:
This event was an actualization of many of my recurring nightmares.
1. An emergency alone. No one to help me in my isolated location.
2. One of my children dying in my arms because I do not know how to save my own baby.
3. Calling 911 and having no one answer, or the person who answers does not understand what I need, where I am, etc.
Yes, all of that happened together like a cluster of calamities from my darkest dreams. I will never forget that helpless and hopeless feeling.
Yet, I will also remember the great relief I felt with Rose’s big breath and the familiar face of a friend coming to the rescue. That pure sense of gratefulness that I felt when I was no longer alone.
This was the big-bang-beginning of our journey.
The enemy finally had a name, Epilepsy.
Seizure Mama is born!
Rose had many ear infections that were usually accompanied by fevers. Unfortunately, these fevers sometimes caused 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 supposedly cause a seizure. We referred to her problem as a “faulty thermostat”. No fevers, meant no seizures… we thought.
Over the next three years after her initial seizure in the pediatricians 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 more to these events than just fevers.
I began wondering if this condition had a source that was always present, not just something that showed up with fever and illness. Was there something in her brain causing these? Maybe a lesion, 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 that they could drain, the infections would clear, the fevers would stop. Voila’!
Seizure Mama speaks to parents:
Later on there were some suspect incidences 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 that. 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. For now the diagnosis was febrile seizures, nothing countered that. I am not one to borrow trouble.
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 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. As the nurse put the thermometer in Rose’s ear she 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 patient room. Rose was still jerking as we gingerly placed her on the padded examination table. Then she was eerily still and ashen. She didn’t look the same. Had something changed in those few minutes? Was Rose still in there? I held my breath and waited for a movement or sound. Waiting for 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 clothes that were 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 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 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 may 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.
Introduction for Watching Rose Rise:
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 that 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 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 a 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.
You child is the star.
When they fall down, you help them up.
Eventually, they will not need your help to get back up.
Your job is to get them strong enough to rise alone.
The getting back up is the important part.
When they are strong enough, you can stand back with pride.
This is where we are now…
Watching Rose Rise
How loud must one scream
to be heard
in this busy, noisy world?
How many decibels are needed
to rise above the background noise?
I do not believe I will ever be loud enough.
So I keep whispering to God
and hope that He hears me.
Seizure Mama and Rose 