I want to make sure that folks who find us know that these events are NOT in real-time.
Our book is to give others hope NOT make them sad.
From now on, I will include a month and year with each story.
Rose is doing GREAT at the university and has decided to triple major.
We are pleased and proud of her.
Story # 21: The Painful Appointment (May, 2002)
We had felt good about the first neurologist in the beginning. The doctor was observant and thoughtful. We had previously left each of our appointments with several written plans of action in case the first option did not bring the results we hoped for. If plan ‘A’ did not work, we also had plans ‘B’ and ‘C’ if needed. Now we felt like Rose was part of a chaotic experiment without planned strategies or goals.
Rose had a long and strong seizure the day before this appointment. She slept on the way to the doctor’s office and wouldn’t hold her head up during the visit. The doctor seemed not to notice Rose’s lethargic condition. Instead I was scolded for the numerous calls I had made to the nurses. The doctor mentioned wanting another EEG(electroencephalogram) and mentioned the possibility of VNS(vagus nerve stimulator) placement.
We were taken aback by these suggestions. We thought we had come for a much needed plan for our next trials with different medications. Instead it seemed that we were at the end of the medication regimen and headed for surgery. Our instructions were to stay on drugs 3S, 4L and 5Z. Stay on these three drugs? What we were doing was not working. Why were we not doing something different?
Here was our nine year old daughter slumped down in a chair, pale and unresponsive and we were supposed to continue on with these same drugs and dosages. We left the appointment and went downstairs in the building to eat lunch at one of Rose’s favorite restaurants. Rose’s hand was so shaky that she couldn’t use a fork. I had to feed her the slaw. I was feeding my nine-year-old because she could not feed herself, but there would be no change in her treatment? This was unacceptable and infuriating.
We all went back upstairs to the doctor’s reception area. I was so shaken that I could barely speak as I explained to the receptionist why we were back. We had to wait until all the other families finished their appointments before the lunch break. It was interesting watching the other struggling families while we waited. The parents were anxious while the children were bored and restless. One father was irate and loud about a mistake that was made by the receptionist.
Finally we got to speak with the doctor again, and before we left we had a new plan. I had the doctor write it down. I still have the paper. Rose was to go down on 4L, off of drug 3S go up on drug 5Z and add a new drug 6K. Was this a plan or a punishment? This was like playing a game of roulette using strong drugs on a young child. Was this new plan better than no change? It gets worse from here.
Seizure Mama speaks to parents:
You must be politely proactive. Although different dosages and a new drug made things worse in this circumstance, sticking with the same regimen would have prolonged the process of finding the right combination. Months later we concluded that 4L was the drug from hell. We never found the therapeutic dose. The effective window was so small that we shot past it and Rose eventually went toxic on this drug combination.
Keep good records and write down everything. Things got so bad that I couldn’t think straight. I was a wreck during these months. We felt damned. Maybe you know how that feels. God help us all.
Rose was busy playing in our workshop, which has a concrete floor. Her dad and I were both busy with our own art and construction projects. Rose was making something of her own while standing at my workbench. She suddenly seized and fell to the floor between the workbench and the sink. Thankfully there was a large, but dirty, rug under her on the floor.
The first dose of her emergency medication did not stop the seizure. We waited a few minutes and then used the second syringe. Finally the convulsions stopped and she lay still on the floor. Our relief was short-lived. We realized that we now had no more emergency medication and it was a Friday afternoon.
I called our friend at the pharmacy and explained why we needed more of Rose’s emergency medication as soon as possible. Unfortunately,this particular drug was not kept in stock because it was very expensive and had a short lifespan. It also had to be protected from temperature extremes. The pharmacist explained that the drug would have to be ordered and then delivered, which would take time.
He knew, just as we knew, that we may not have that kind of time. We could be in the middle of a status situation with nothing to save Rose. The pharmacist was thinking out loud when he offered that maybe he had some of a “dead girl’s medicine” at the other pharmacy. A dead girl’s medicine? We needed a dead girl’s medicine to save Rose. I was so stunned that I hung up the phone before I started crying.
We knew that Rose’s emergency bag with more medication was in the principal’s office. It was 4:30 on a Friday afternoon, but maybe someone would answer the phone. When I called the school’s office, the assistant principal answered. She and the guidance counselor were there wrapping Christmas gifts for needy children and their families in the community. We told her what we needed and that one of us would immediately come and get the big red bag. She offered to deliver the bag to us, so that we both could stay with Rose.
Here was one good person taking her time to do something helpful. What a blessing. We could relax. The drugs were on their way. Rose would be safe now. What a gift that was.
Seizure Mama speaks to parents:
Saved by the bag again. I cannot stress this enough. You must always be prepared for a seizure. It is the only way your family can carry on responsibly and safely. You have no choice about where the seizures occur, but you can make the choice to always be prepared.
I want to add here that SUDEP or death by seizure will always be in the back of your mind if your child has the tonic clonic/grand mal type of seizures. Hearing the pharmacist offer a dead girl’s medicine, first sent my mind to her poor family and then to the possibility of Rose’s death. No one wants to have these thoughts. There is no point in dwelling on such sadness.
Yes, living with epilepsy is like living with a terrorist or a time bomb. But none of us knows what will happen in the future. Your life is now, with this precious child of yours, so live it now. I call it “nower.” It means the power of now. That’s all anyone has. Live now. Whatever will be, will be.
I have seen that elephant.
The one that nobody wanted to acknowledge.
The one everyone is now talking about.
I saw it over two decades ago.
In my carport.
I will never forget it.
Its name is SUDEP.
I chased it away by beating on Rose’s back.
I thought she had aspirated vomit.
I threw her four-year-old little body across my knees
and beat on her back. It was a hard beating. I was afraid.
She was blue. She was not breathing. Was she dead?
Her seizure had marched across her whole body.
That seizure parade took over 45 minutes.
The elephant came at the end, instead of Santa or a firetruck.
When I laid her on the floor of my van to start CPR,
a deep breath entered Rose’s chest.
The elephant left us.
That was her first ever non-febrile seizure.
The elephant was Epilepsy’s welcoming committee.
Now everybody knows to look out for it.
We thought we were done…but we were wrong.
Rose made it three years without a seizure. An EEG(electroencephalogram)was done. It was normal. She was weaned off of drug 3S during the summer. She grew taller, quicker, and smarter. We felt epilepsy was behind us. We believed the seizures were due to all those ear infections and fevers. Rose was growing and thriving. We were all relieved.
Rose started third grade without much worry. Everyone involved with her care knew her history. As a precaution, Rose’s medical information was shared with her new teacher. This young woman was very funny and enthusiastic. Rose’s classroom was near the office. Rose was happy.
We were all getting into our own grooves. Our lingering fear had loosened its hold on our family. I restarted my garden art business and began scheduling shows. My son was now in middle school leaving Rose at the elementary school without her big brother. No worries.
In mid- November, I had a two-day art show in a neighboring town about forty-five minutes from Rose’s school. Anytime I was away from Rose I wore a beeper and carried a bag phone. I can confidently say that her father and I, both at once, had not been this far from Rose since her diagnosis five years ago. Anytime I was away from her I wore a beeper and carried a bag phone.
The week of the show, Rose got another ear infection. She had hoped to go to her first sleepover at a friend’s house just across the road from our home. I was preparing for the show. Everyone was busy, too busy.
We kept Rose out of school on Thursday to recuperate and rest. She seemed to feel better. Friday morning was frantic. I gave Rose some over-the-counter NSAIDs(non-steroidal anti-inflammatory drug) and her antibiotics. I also sprayed her nose with a sinus spray as her ear specialist had recommended. We thought we had covered all the bases,but gut was still screaming. This was too much at once; the two-day show, the sleepover and especially being far from Rose.
My husband and I delivered our two children to their separate schools. Then we headed to the town of the art show in separate vehicles. He was to help me unload my heavy pieces into my booth and immediately return home. As we were unloading my garden art, my beeper went off. I looked at the tiny screen. It displayed the number of Rose’s school with a 911 at the end. This was our agreed-upon signal to drop everything and run. I am so thankful we had this signal in place. I explained to the artists in the booth beside me that we had a medical emergency. They assured me that they would pile my art under the table and cover it. We jumped into our truck and my husband drove as I called the school.
Our friend in the office answered the phone. He said “It’s Rose. Get here quick.” I explained that we were headed up the interstate, but were forty minutes away. Our hazard lights were on and I was waving a white sheet of paper in the windshield. Still some people refused to pull over into the right lane. At one point we passed in the grass and lost a hubcap. The beeper kept going off. The calls kept coming: “What hospital do we take her to?” “How far away are you now?”
My one question was ”Is she still breathing?”
Seizure Mama speaks to parents:
Let’s play a different version of the terrible game we parents play, “Second Guess Yourself.” Only this time let’s change it from ‘What if I had…’ to “What if I had NOT…?”
Examining the events described above, what if I had NOT…
1. …let Rose’s teacher know that she had epilepsy.
2. …set up an alert system including beeper and phone. (This occurred before cell phones.)
3. …left an emergency bag in the office with emergency medications in it?
If I had chosen to hide Rose’s seizures to avoid the stigma, would she still be here?
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 #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.
When Rose was in eighth grade band, the middle school band was invited to join the high school band to play during a football game. Rose sat with all the other trumpet players in the band section of the stadium.
Rose’s father and I sat in the adjacent section where we could keep an eye on her. We were concerned because Rose hated loud noise. We had instructed her to take out her tiny hearing aid while the band played. This hearing aid was red and the size of a kidney bean. It cost thousands of dollars and was not covered by insurance.
At some point during the first half, we noticed a disturbance where Rose was sitting. She was having a seizure. I rushed down to her side. The band director gave the other band members the okay to go take a break. This made it easier for the EMTs to get to us. Rose stayed unconscious for quite some time after the seizure. Her dad went to get the van and drive it up to the back of the stands.
It was about then that I noticed that Rose’s hearing aid was not in her ear. I searched around her. There was no little red bean. I went through her pockets. No bean. The EMTs joined in the search. We made quite a spectacle. Unconscious Rose, her mama, and a bunch of men in uniform scouring the empty stands.
The band members returned from their break. The band leader asked if I minded if they played some music. The music resumed. Rose aroused. A group of men helped haul Rose up the stadium steps to the van. As I followed them up the steps, a woman tapped me on the shoulder and asked “What were ya’ll lookin’ for down there?” She was curious about the lost item, not the unconscious girl. I guess asking about Rose would have been rude.
When we got Rose safely into the backseat of the van, I informed her dad that her tiny hearing aid was missing. I searched her pockets once more. Tucked down in the corner of her jacket pocket was that tiny expensive bean. I was so relieved and happy.
As we drove away from the school, Rose’s dad turned to me and asked, “Other than that, Mrs. Lincoln, how was the play?”
Seizure Mama speaks to parents:
It may be futile to try to keep your child’s seizures a secret. Rose’s condition was known to everyone at church, at school, and out in the community. We never tried to hide her epilepsy. There was no point in it. It went with us wherever we went, whether we liked it or not.