Story #22 (Most of 2002)
The drug roulette regimen made everything worse. Rose was not herself before a seizure nor after a seizure. She was lethargic, floppy, and dopey. She moved from her bed, to a chair, to another chair, and back to her bed. The seizures came with us wherever we went. She seized in restaurants, at birthday parties, at Brownies, in the yard, watching television, in a big box store while shopping for a helmet, at a family reunion, in a funeral home and even in swimming pools.
We took a plastic Adirondak chair with us on outings. The chair reclined slightly, so she could seize in it without falling out. For us every party was BYOC(bring your own chair), and of course the seizure bag went with us everywhere. We evaluated the risks of each outing. Should we go eat at this restaurant? No, it would be too hard to carry her out through the gift shop. She we go to a ballgame? No, seizures in bleachers are too dangerous. Should we go? No. Eventually, we stayed home waiting for the next seizure. I really wanted to buy a little wheelchair, so we could go places, but was advised against it by other family members. “Rose would look handicapped and feel handicapped.” Yes, but she would be safe.
We walked everywhere linked arm in arm with her. A fall could come at any second. We went up and down our stairs as a unit so she would not fall. We called this method ‘stair pairs.’ To go down Rose would put her left hand on the person in front’s shoulder and her right hand on the handrail. The front person would put their left hand on hers and also hold the rail with their right hand. Going up would be reversed with her escort behind her. Rose would announce when she wanted to go up or down and someone would stop what they were doing and escort her. We made it a point to not say no to her requests to use the stairs. There was so much she could not do at this point; at least she could be free to move about in her own house.
When no one was in a room with Rose, her father, brother or I would whistle two notes and she knew to echo the two notes back. We whistled instead of calling her name so she knew we were just checking on her instead of needing her to come to us. We whistled to her about every three minutes. It got to be so much of a habit that I would catch myself whistling notes when Rose was not with me. She slept with me during these terrible months. Sometimes she would whistle in her sleep.
We referred to this technique as “echo whistling.” If she did not repeat our two notes we would call her name. If she did not answer, we would rush to find her. Sometimes she was just too busy to answer, but a few times we would find her unconscious, leaving me feeling feel guilty about leaving her alone. Negligent for three minutes. Shame on Seizure Mama!
Take a chair, echo whistling, stair pairs. This is how we kept her safe as the seizures took over our lives.
Seizure Mama speaks to parents:
You need to devise methods like ‘echo whistling’ and ‘stair pairs’ as part of your everyday routine to keep your child safe. We used two notes for ‘echo whistling’ because Rose had complex partial epilepsy and could do repetitive automations, even at the onset of a seizure. She could probably whistle during these periods, but could not echo the two notes from someone else.
Painting the Whole Picture by Joshua Holmes tells the whole story of life with epilepsy.
I was amazed and impressed by Joshua’s family’s efforts to help him overcome his cerebral palsy and epilepsy. This is a book for families. It’s a good model for how to help children by making them do things for themselves instead of enabling. Determination was modeled and encouraged.
Joshua shared his various struggles during grade school, college, careers and living independently. These events were not sugar-coated. He let us see the process of resolving problems.
I admire his tenaciousness and courage. I liked that the book included photos of his family and his art. It made me feel like I know him as a whole person.
This book is another great resource for folks with epilepsy and their families.
Joshua Holmes has written other books. You may want to look him up.
Seizure Mama/Flower Roberts
I will be putting this book on Rose’s desk for her to read while she is home.
Speedbumps: Living with Epilepsy by Jonathan B. Dodson is his voice telling his story.
The book chronicles his life from his first “speedbumps” and seizures to being an adult.
The book is easy to read and divided nicely.
It does not get bogged down in medical details or side-stories.
His tale is streamlined well so that young readers can read it over a weekend.
This would be a great resource to put in the hands of teens struggling with epilepsy.
I appreciate Jonathan and his family for putting together such a useful book.
Seizure Mama/ Flower Roberts
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.
Seized: Temporal Lobe Epilepsy as a Medical, Historical and Artistic Phenomenon by Eve La Plante was a fascinating read. I found myself talking about it to my family and friends.
If you or someone you know has TLE (Temporal Lobe Epilepsy), I think you will be enlightened by this book.
It is divided up well, so that you can chose whether you are reading it for intervention information or just to learn about the history of this type of epilepsy.
What I found so informative was how the research on TLE has brought together the psychological and physiological disciplines to approach many dysfunctions holistically as both physical and personality disorders.
Bringing together neurology and psychology gives better understanding of people suffering from diseases that were previously under the umbrella of mental illness.
I will add, if you are deep in the throes of suffering health issues and seizures from TLE, this may be more than you want to know. You may benefit from reading the case study part.
If you are trying to understand epilepsy, this is a great resource. I appreciate Eve LaPlante for doing such a thorough job of researching doctors, patients and medical history for this book.
On the last day that Rose was home we went swimming in the lake.
We took a long boat ride upriver.
We grilled barbecued ribs and onions.
We tried to fit a whole summer into that last day.
We wanted her to remember home and fun and love
while she was away from us at school.
I am missing my Rose today, but I am super proud of her.
Someday she will be trained to help others during disasters.
She knows all about fear and emergencies.
Who better to be on the front lines than my Rose?
Story # 20:
Things fell apart. Drug 4L had been added to drug 3S after the seizures during the holidays. At first drug 4L made Rose mean. Getting her schoolwork done was a battle. Either she would not or could not concentrate. Were these changes due to the new drug, the new homebound situation, or the seizures? Her ear infections continued, so antibiotics were frequently in the mix.
We kept records of all her drug dosages and combinations, along with seizure descriptions on a chart. We couldn’t keep all of it straight unless we wrote it down. The months were a blur of seizures, side effects and sickness. I read books about epilepsy and researched epilepsy drugs and treatments. It was all so confusing. How could we help our Rose if we did not understand this disorder and the effects of its medications? I felt helpless and hopeless. Rose was changing as her drugs changed.
Appointments with the neurologist became very frustrating. The partner of the practice had left, so our doctor was handling a double load of patients. We used to feel like there was a set plan for Rose’s treatment; now it seemed like one long experiment. The doses for drug 4L kept increasing and we saw nothing but side effects. Her seizures became longer and stronger. We must have missed the window of effectiveness for drug 4L. Finally it was dropped and drug 5Z was added to her doses of 3S. Experimenting with the wrong drugs and dosages went on for months. Every few days, Rose would have a long, strong seizure. She would spend a day or two recovering before another seizure knocked her back down. I did not leave her anymore. I was too scared.
Sometimes on the weekends when Rose’s dad was home, Rose’s brother would ride the trails through the woods around our house. I would go with him carrying my camera and a walkie talkie. If a seizure occurred, her dad could call me to come back. I would hike through the woods and allow myself to cry. This was the only time I would leave the house. I walked the paths in our woods relieved to be out of our sad house where the walls kept closing in.
I never let Rose see me cry. We did not want her to see us saddened or scared. We were losing her. Her essence was disappearing. She was a groggy, foggy, tired mess. The drugs were not helping anything. The seizures were wearing her down and the drugs were ruining the time in between them.
Seizure Mama speaks to parents:
I am ashamed to look at the records from these terrible months. Why did we not get a second opinion sooner? Why did we not demand to go to an EMU? The awful reason was that we thought going to the EMU was a big step toward surgery. I had read about the different surgeries that were used to stop seizures. I wanted to give every drug a full chance to work. When I look back at her charts of medication combinations now, I am horrified.
Drug changes were being made frequently and almost in a random fashion. I think the neurologist was on overload and was pushed to try things because of my constant calls and letters. She was seemingly experimenting with various possible remedies.
It took the terrible scare of Rose going toxic for us to decide that enough was enough and seek a second opinion from a different neurologist in a different city. That was a turning point for us. Don’t wait that long.