Toxic with a Timer

Story # 22: Toxic with a Timer

Rose’s latest drug combination became a recipe for disaster. She was dizzy and nauseated. She was limp and barely moved or responded. She was silent. She was being poisoned.
We put her on the couch, so that we could all keep an eye on her. She was on three drugs. One was an extended release form. One drug must have amplified the affects of the other two. Her nausea and vomiting turned to dry heaves and bile. Seizures were clustering. We knew she was in danger.
We called the on-call neurologist at about 11PM. The conversation was difficult due to the doctor’s foreign accent. My husband and I were both on the line listening. We thought the doctor said to use the emergency drug if Rose had another seizure. Then we were to take her to the Emergency Room if she had a seizure after that. Was that really what the doctor said? Two more seizures and then the ER? Really?
The next morning Rose was very pale, weak and listless. She barely moved. We tried desperately to get her to eat and drink each time that she woke up. She was fading before our eyes. I called the doctor’s office to report her condition. I broke down as I explained that we felt she was being poisoned by these three anti-convulsant drugs and still seizing.
The wise nurse calmly told us to get a timer. She said to set it for twenty minutes. Every time it went off, we were to wake Rose up and make her sit up and sip some water. We set and re-set the timer all day long. For hours we watched her and waited for the bell to ring, over and over.
Hours later she began to improve. The poison was being diluted. Rose was re-hydrating. The color came back in her face. She was safe. No trip to the Emergency Room required.

SEIZURE MAMA SPEAKS NOW

We kept gel in the refrigerator to put on Rose’s arm for nausea. There were several times when her vomiting lead to seizures because she had thrown up her medication. We always sifted through her vomit if it occurred soon after a dose. I know this seems gross, but you need to know whether a dose needs to be replaced or not. Doubling a dose may be worse that missing a dose. You need to know.
This particular situation was the exact opposite. Rose was sick and seizing before throwing up. Her dosages were too high. The combination was too much. She was listless and unresponsive. I still distinctly remember this because I was so afraid.
Know your child’s dosages and drugs. If you do go to the Emergency Room, drawing blood levels may be an important piece of information for the doctors involved in the treatment.
We wrote down all dosages on a calendar and used a pill organizer. There was no guessing about the medications that were taken. We also recorded how the dosages affected her. This information was used to convince the neurologist that she needed a different drug or combo. Do not count on your memory. Write it down.

 

SEIZUREMAMA

Kind Kids

Story # 21: Kind Kids

Of course epilepsy came on vacation with us. Rose had three seizures during our week at the beach. Two occurred while swimming in the pool. She always wore a life jacket while in the water and someone stayed an arms-length away. I know it seems risky to let her swim, but she loved it so much. We live on a lake so we swam a lot. We could not forbid Rose from participating in something we all enjoyed together. If she seized in the water, we just held her until it was over and carried her out to a lawn chair to sleep afterward. We suspected that extreme temperature changes triggered seizures. We tried to avoid the water in the mornings when it was cooler. We also covered her with a towel when she got out so she would not get chilled.
Rose also loved the ocean. Swimming with her among the waves made me a complete wreck. I was afraid we would both go under if she seized in the ocean. She was content to go in for only a few minutes and then play in the tidal pools with her shovel. She also enjoyed searching for little fish and shells in these pools.
Rose and I had just walked down onto the beach and picked our spot on the edge of a tidal pool. I set down our bags and towels just as Rose fell face first into the sand. She had sand on her face and in her mouth. I placed her on her side to seize, as I tried to wipe off some of the sand that stuck to her face. A nice lady nearby offered me a bottle of water to wash her off with. The seizure soon ended, but Rose was covered in wet, sticky sand. I swaddled her in a towel and sat close beside her to wait out the thirty minutes or so it would take before she woke up. My family could see us from the porch of the condominium, so I knew help would arrive when someone spotted Rose lying still under a towel.

While I was sitting quietly beside Rose, two boys about her age walked by. They were carrying a surfboard, table-fashion, covered with an assortment of shells and seaweed. They both glanced at Rose as they walked by. They put down their board a ways down the beach and walked back to me. They asked what was wrong with Rose. I explained that she had just had a seizure, but would be fine when she woke up. We talked about the treasures they were carrying on their board. I shared that Rose would have loved to have seen their haul from the sea, if she had been awake. They walked back to their board. One returned carrying a giant pin shell. “Give her that when she wakes up”, he said. We still have that precious shell.

SEIZURE MAMA SPEAKS NOW

There will be children who do not understand epilepsy and seizures. There will be children who will be afraid of your child after seeing him/her seize. There will be a stigma. It will be harmful and painful.
There will also be children with great kindness. They will be protective of your fragile child. They will be loyal friends. Relish the memories of the kind kids. They are the angels of this broken world.

The Seizure Cycle

The drug roulette regiment made everything worse. Rose was not Rose before a seizure or 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 Walmart shopping for a helmet, at family reunions 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. Every party was BYOC (bring your own chair). 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 is too dangerous. Should we go? No. By this point, we basically 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. She would look handicapped. She would feel handicapped. Yes, but she would be safe.
We walked everywhere attached to 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.’ When no one was in the room with Rose, the person in charge of her would whistle two notes and she would echo the two notes back. We whistled about every three minutes. It got to be so much of a habit that I would catch myself whistling notes when she was not with me. She slept with me during these terrible months. Sometimes she would whistle in her sleep. We whistled so we would not have to keep calling her name. We referred to this as ‘echo whistling.’ If she did not repeat our two notes, we would call her name. If she did not answer, she would rush to find her. Most of the time she was too busy to answer, but sometimes she was unconscious. It was these times I would always feel guilty about leaving her alone. Negligent for three minutes.
Take a chair everywhere, echo whistling and stair pairs. This is how we kept her safe as the seizures took over our lives.

The Painful Appointment

This is story #19 in the book.

We had felt good about this neurologist in the beginning. This doctor was  cordial, observant and thoughtful. We had previously left all our appointments with several written plans of action in case the first choice did not bring the results that we hoped for. If plan ‘A’ did not work , then we also had plans ‘B’ and ‘C’, if needed.  But 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. Rose 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 neurology nurses. The doctor mentioned wanting another EEG(electroencephalogram) and the possibility of a 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 regiment and headed for surgery. Our instructions when we left the office were to stay on drugs 3S and 4L. Stay on these two drugs that do not work? 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 these same drugs and dosages.

We left to office 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? Absolutely not!
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 had their appointments before the lunch break. It was interesting watching all the other struggling families while we waited. One father was irate and loud about a mistake that was made.
Finally, we got to speak with the doctor again. There was a new plan when we left. I had the doctor write down. I still have the paper. Rose was to go down on drug 4L, off of drug 3S, re-add drug 5K and add on a new drug 6Z. Was this a plan or a punishment?  This was like playing a game of random roulette with strong drugs on a young child. Was this new plan better than no change? Hang on. It gets worse from here.

Epilepsy Again

Rose made it three years without a seizure. An EEG was done. It was normal. She was weaned off of drug 3S during the summer. She grew taller, quicker and smarter. We felt this  childhood epilepsy was behind us. This was due to all those ear infections and fevers. She was growing and thriving. We were so relieved.
Rose started third grade without much worry. Everyone involved with her care knew her history. We shared her medical information as a precaution. She had a very fun teacher. She was in a classroom near the office. She was happy. We were happy.
We were all getting into our own grooves. This lingering fear had loosen its hold on our family. I restarted my garden art business and began scheduling shows. Her brother was now in middle school. She was at her school without her big brother. No worries.
In mid- November, I had a two-day art show in a neighboring town. It was about forty-five minutes from Rose’s school. I can confidently say that both her father and I, both at once, had not been this far from her since her diagnosis. 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 sleep-over at a friend’s house just across the street. 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 and her antibiotics. I also sprayed her nose. All this was by her ENT’s directions. We thought we had covered all the bases. My gut was still screaming. This was too much at once. I did not have a good feeling about the two-day show, the sleep-over and especially being that far from Rose.
My husband and I delivered our two children to their separate schools. Then we headed to the town of the show in separate vehicles. He was to help me unload into my booth and immediately return home. As we were unloading my heavy pieces of garden art, my beeper went off. I looked at it. It was the number for 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 they would pile my art under the table and cover it. We jumped in the 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. 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, ” Is she still breathing?”

My Window to the Past

 

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I have spent a lot of time looking through this “window.”

It is a magnifier that I use to read Rose’s medical records.

When I bend over to read through it,

it feels as though I am peeking through a window

into her past.

No videos, no photos, no sounds

Just words

The names of doctors and drugs, test results, descriptions of events…

I go through this tiny window back into hospitals

back to the fear

Trying to find the words to make sense of the suffering.

Searching for answers to share.

Desperately seeking the X on this map to find the terrible treasure,

so that it can be dug up and destroyed.

Looking back for the where and the why

and finding our stories to keep you company

while you wait

on the other side of this window.

SEIZUREMAMA

Be Brave?

Rose had seizures everywhere.

On these many occasions, I plaster a smile on my face and look folks in the eye as they glance and walk by.

Nothing 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”?

What choice do we have?

Seizure.  Stop the clock.  Then we wait.

Seizures stopped ballgames, picnics, award ceremonies, bible school, band practice, ball practice, dinners in restaurants.

Stop. Wait. Hurt? Get up.

Stop. Wait. Hurt? Get up.

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 she 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,

afraid.

SEIZUREMAMA