The seizure in the band room was one of the ones that I cannot forget. It is still clear in my mind. I guess extreme fear does that to the brain. There were so many factors out of my control.
I could barely contain my panic. Rose was in danger of getting injured by her surroundings during the seizure. Then her post-ictal rage endangered us both. She seemed blind and did not recognize my voice. I know she must have been terrified.
While this was going on, I knew that all the band students were waiting outside the door. It was the end of the day. They needed to put away their instruments. They needed to catch buses and rides home. Time was running out. I did not want Rose’s fellow students to see her acting crazy.
I was thankful for the two teachers who stayed with us. Rose came to herself just in the nick of time. She sat up quietly as the band students flowed in and out quickly.
Rose’s father and brother arrived. Her neurologist was called. A new medication plan was made.
I still feel that panic in my throat and gut when I recall this particular event. An enemy within is hard to fight. That total lack of control is haunting.
Do not feel sorry for us. Think how lucky we were to have the support of others and know that we were always close to each other. It was tough being together so much, but being apart when Rose needs me has been much worse. (Her university is 3 hours away.)
We have learned to live with a level of uncertainty that most never experience.
Your body is set up as two fluid compartments. Molecules and ions move across the membranes between these two compartments by diffusion or active transport. Diffusion moves from a high concentration to a low concentration. This requires a solvent for the solutes, in this case medications.
That solvent is water. That magical, universal solvent that makes all life possible. To move medications takes water. Cells need to have water inside them and around them to work properly. Drinks like soft drinks (and alcohol) actually pull water out of the system because they are hypertonic. So not any fluid will do.
If you or your patient does not like to drink water, then splash in some juice for flavor and color(not red). You may require the patient to drink a glass of water before a glass of a favorite drink.
Think of water as a transport system like little rivers in your body taking substances back and forth to and from your blood vessels. These tiny waterways between cells are essential for movement. Solutions need dilution to get to a proper concentration level to move ions between the two fluid compartments.
Not enough water leaves good substances on the ships and bad substances on the loading docks. Water keeps it all moving in or out.
Medications require proper hydration to get where they need to go. Keep everything moving with water. You will feel better.
P.S. To avoid holiday ‘cotton mouth’, drink copious amounts of water after a binge. Keep a tall glass by your bed for that moment when you awake with a dry mouth and a headache. You may want to set two pills of some sort out with it.
Write everything down. Take notes on envelopes and receipts. Keep all this in one place. Just date it and throw it in the box or drawer. That way these facts are not swirling around in your mind and cluttering your thinking. When you need some bit of information from your stash, get a notebook, paper and tape. Use them to organize the scraps. We use dividers to separate the years.
I cannot tell you how many times I started worrying about something in the middle of the night and had to go to “the drawer” to retrieve a forgotten piece of data before I could go back to sleep. All those pieces of paper saved Rose and resulted in our book.
We made a chart for each year and wrote down any event. We can glance at that one page and get a sense of how our lives were at that time. It is nice to put this away for safe-keeping instead of remembering it over and over.
When medications were being changed quickly, we made a different chart with drugs, days, seizures and side effects right there in black and white. We took these to appointments. Nobody argues with paper.
I learned this trick as a teacher. I posted the rules on the wall of my classroom. When a rule was broken the student might try to argue. It was then I would simply walk to the poster and point to the broken rule and pause. The rules had been up since day one. No reasonable person would argue.
So the file drawer eventually became two full file cabinets. They are full of marked up seizure books we have read, articles we researched. All her records of every prescription by years are in one drawer. Twenty years went by in the blink of an eye, but it’s all there if I need it. Nobody argues with paper.
Once when we were leaving the EMU, Rose was being sent home on dosages that were too low. The doctor in charge was abrupt and intimidating. I meekly showed him my records of Rose seizing on that low dosage. He looked and paused, but said nothing. Her dosages were not changed. We went home. She had a long, strong seizure on the couch while the neighbors were visiting. I called back to the EMU, the dosages were raised immediately. I guess he did not want to be wrong until he was proved wrong. Nobody argues with paper.
(THEN and NOW for Chapter 22:Safety During the Seizure Cycle)
There is no other way to describe our parenting style during those terrible months. It is hard to act relaxed when you are constantly on high alert, but we tried. We endured puzzled looks from strangers. Sometimes we got unsolicited advice. We learned to tolerate all this. It was part of the over-protective parent package. We were protecting Rose from injury, not public opinion.
I know this is a hard pill to swallow. Most folks mean well and are truly trying to help. Some advice is so ridiculous that taking it would be harmful. Our worst treatment suggestion came from a loaned book. It stated that we should hook up the patient to a car battery and shock him/her to kill the Ascaris lumbricoides (worm)larva that were clustering at the base of the brain and cutting off the oxygen supply.
You do what you have to do. This is your fragile child. You will have to live with the results of the drugs and injuries. You need to let the opinion of others fade into the periphery and stay focused on your child’s needs.
If the doctor suggests a helmet, let your child pick it out and decorate it. If you cannot safely leave home without your child strapped in a wheel chair, get one and decorate it for a parade. Embrace whatever it is you need to do to carry on, and do it shamelessly. (I once saw an advertisement for colostomy bags with matching bikinis. That’s how it’s done! )
Sometimes I wonder if I am helping anyone. I do not like giving advice, but I am telling you what I wish someone had told me twenty years ago.
Then and Now for Chapter 20: Drug Changes Change Rose
This period of time will always come back vividly due to the fear I felt every minute of every day. “Things fell apart. Months were a blur.” this chapter says. We were panicked by Rose’s decline. All we had were strong seizures and horrible side effects. I did not want to take my eyes off of her, but I was cracking up inside. Something had to give.
I have had to ask myself some hard questions about this stretch of Rose’s epilepsy. Why did we go along for so long? I am trying to be honest and careful here because I know some of you may be going through similar experiences.
When do you bail water or bail out? I think we bailed water too long here. Why? Ignorance and insecurity. We did not know what to do to help Rose, so we did what the doctor told us. A few hand slaps from a doctor makes one hesitant to argue. I was trying to study drugs and other treatments that I could barely understand. I had to trust somebody else to know what to do. But the doctor did not see Rose lying on the couch all day, listless and pail. She did have to support her as she walked. She did not hear her voice flatten and her eyes flutter.
If you are this scared of the drugs or the doctor, bail out.
GET A SECOND OPINION.
Tell them Flower sent you.
I cringe when I remember this period. If we had continued on this path, I am not sure that the Rose we have today would even exist now.
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.