Story #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.
Long before the rest of the population was hooked up to technology,
Seizure Mama was wired.
My first two technology tumors were a beeper and bag phone.
For you young people, a bag phone back then weighed about thirteen pounds.
It was the size of an encyclopedia.
If there was an emergency with Rose,
the beeper went off with the number of the person who called.
I would unzip my “encyclopedia” and call them back.
I carried this phone in a giant purse or backpack everywhere I went.
When I want to whine about having to wear a little pack with my phone in it now,
all I have to do is think back to the beeper and bag phone days.
That shuts Mama right up.
We had our annual appointment with our hero neurologist yesterday.
Much of the appointment was spent discussing the importance of sleep.
Rose is a night owl.
She has a third-shift life while the rest of the world sleeps.
There is a kink in her schedule this summer.
She has a first-shift job.
Sleep deprivation is a seizure-provoker.
Rose cannot drive if she has another seizure.
A sleep-aid was prescribed.
Will she take it?
That’s up to Rose.
“Mama-Uber driver” would appreciate it.
Is Rose adult enough to make the best choice?
Old habits are hard to break.
I am hoping for wisdom and maturity.
We shall see.
Story #6 Be Brave:
Rose had seizures everywhere. On these many occasions, I plastered a smile on my face and looked folks in the eye as they glanced down and walked by. What’s so unusual about a grown woman sitting on the floor/ground beside an unconscious little girl?
Rose had a particularly dramatic series in an undisclosed, public location. As I was sitting on the floor in a hallway, a woman with healthy children walked by, patted me on the shoulder and said “Be brave” and walked away.
I am on the floor. My child is unconscious, again. Be brave? Do you tell a person with cancer to be brave? Do you pat the shoulder of someone being wheeled in to open-heart surgery and whisper “Be brave.” to the patient?
What choice do we have? Seizures disrupted ballgames, picnics, award ceremonies, bible school, birthday parties and dinners in restaurants.
I am tired of being brave. How about sitting on the floor with me? Wait with me down here on the floor. Anchored to this spot until it’s over. Until Rose comes back to me.
Stay and help us up.If you really care, don’t walk away leaving us to be brave down here alone and afraid.
Seizure Mama Speaks to parents:
Seizures may show up wherever you go. Please do not stay at home wondering and waiting. Other people cannot understand what you are going through if you do not tell them. Most folks truly want to help, but do not know what to say or do. Do not waste your emotional energy getting mad at others because of this. I do not know what to say to my grieving friends. I am always afraid of saying the wrong thing. But what does my silence say? Be brave!
Story #4/ First Drug Down:
Rose’s first seizure medication was a chewable tablet we will call 1T. Now we knew that the cause of the seizures was always in her brain, not just showing up with fevers. The enemy was a resident, not a visitor. Our family was in a constant state of vigilance. I do not say this lightly. Our vigilance continued for decades. We were emergency-ready twenty-four/seven. Rose nicknamed herself 24/7 because of this. We all tried to play this down, but it was what it was. Epilepsy was the new center of our universe, but we tried to carry on as before.
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 big seizure? Her carefree childhood was transformed into a series of tests and medications and worried faces.
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 campsite was along the shore of a crystal-clear lake. Some friends with a daughter Rose’s age came to visit and spend a day with us out on the water. Rose had a lot of fun on this trip. She made her own little playhouse 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 in her sleep. Her face and neck were covered in drool. Her skin looked splotchy. The seizure was short.
I laid 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 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 safety.
We stopped by the doctor’s office and pharmacy on the way home. Drug 1T was not the right drug. 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, and sometimes 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 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.
Note: I will not be sharing drug names in the book or blog.
Be aware Mama Bear,
that being everything
can make you nothing.
You will not look at yourself until you have no reflection.
You will have no shadow because you are the light.
You will morph into mortar and lose your own form.
You will be the ball in the game. Kicked around.
You will be the food on the table. Consumed or composted.
You will be washed, dried and folded with the laundry
just to be worn and dirtied again.
You will be the garden, planted then picked.
You will be everything to everyone, and nothing to yourself.
They will grow up and move on.
Then what will you be?
Save back a little bit for you Mama Bear.
Keep your kernel.
So when the need leaves
you can grow and renew
back into you.
Seizure Mama/ Fellow Mama Bear
Story #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.
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.
This is my daughter’s garden.
She chooses what grows in it.
She selects the types of plants and the number.
She takes care of those.
If weeds intrude, they are removed.
The garden belongs to her.
It is her choice what grows and what goes.
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.