Category: seizures

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.

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

 

 

 

 

 

 

 

 

Are you Shoveling Sand?

I need to confess this to you, because you are probably doing it, too.

I am a “sand shoveler.”

One of Rose’s doctors used this analogy about one of her treatments.

He said, “We were shoveling sand against the tide.”

It was one of those moments that got frozen in time and tattooed into my memory.

Not the kind of description you want to hear about your child’s treatment.

Imagine for a moment, standing in the tidal zone, frantically shoveling sand

as it shifts anew with each crashing wave.

No matter how many shovels full that you dig, no matter how big the shovel,

you will NEVER make any progress.

But you just can’t stop because this sand needs to be moved and these mountains need to be moved because they are in your baby’s way.

You insanely keep going, because stopping would mean surrender.

Tenaciously fighting a losing battle.

I have learned to periodically pause and assess my effectiveness.

Here is today’s stupid example of my shoveling sand.

There was a smudge on the glass door.

I wiped and scrubbed over and over, until I figured out it was on the outside of the glass.

No matter how much I cleaned the inside, it would never matter on the outside.

Now back to you.

Are you trying to earn a seizure-free day?

Do you have a list of hoops to jump through?

Take all medications on time.  Always have nap time.  Eat healthy.  Drink enough water.  Don’t get too hot or too cold.  Avoid emotional outbursts. Don’t get too tired. Avoid germs.

Jump. Jump. Jump.

SEIZURE.

Blame. Guilt. Sadness. Try harder.

Guess what?  You can’t fix this yourself.

The right medications and avoiding known triggers is the only way to improve this.

Shoveling sand won’t do anything but break YOU.

Washing the wrong side of the window will never remove the smudge.

If your child had diabetes or asthma the treatments would be straightforward.

Epilepsy is a mysterious beast.  It’s too complicated to kill.

So we kill ourselves instead.

Because we have to do something!

STOP shoveling sand!

SEIZURE MAMA

 

 

 

The No-Hope Diagnosis

This is part of the story I have put off writing.

Maybe if I get this one out of the way, I can finally finish this book.

Rose was nineteen years old at the time.

She had experienced febrile seizures since she was eighteen months old. Her first real seizure without fever was at age four.

She had tried eleven different medications in many different combinations.

In June of 2012, we took Rose to a Mayo Clinic.

She had been seizing and getting injured.  She was home-bound the last half of her senior year in high school.

She was in danger. We needed the best doctors in the country to study her case.

We went.  Many tests were run.  We hoped that we would have a clear picture of what was happening in her brain when this was over.

All her records were taken…pages in notebooks, scan films, discs of MRI’s and CT’s.

We were hopeful. It was time to slay this dragon.

The doctors would meet in mid-July to collaborate on her case and call with results and recommendations.

We waited impatiently to hear from them. We were on edge. Were we headed into a surgery?  Would we be testing a new drug?

When the call came, it was not what we had hoped for.

There were a lot of percentages rattled off over the phone. At some point my brain switched off.  All I remember is the no-hope number of 5%.

If they opened her skull and placed electrodes on her brain there was a 50% chance of finding the source. If they found the source and removed it, there was a 50% chance of improvement, along with a 2% chance of morbidity and a 5% chance of serious complications.

The final percentage of any chance of improvement was 5%.

I have this in writing.

Five percent is way too close to zero percent.

I cannot remember how many days that I walked around in a fog.

BUT THEY WERE WRONG!

The best and the brightest experts in their field still aren’t God.

Was it the new drug from Germany?  Was it cutting out red dye #40?  Did something happen during that slow-motion seizure that dammed up the flow through her brain?

We really don’t know why she improved after that.

So if you get a no-hope diagnosis, remember Rose.

There is always hope.  Even if it is just 5%.

SEIZURE MAMA

Aftermath of Enabling

For this book to serve its purpose, I must be totally honest.

I am writing it for other parents of children with epilepsy.

This means laying bare the goof-ups.

There were many.

I was so determined to run block for Rose, that I didn’t allow her to fall or fail.

I wanted to compensate for all the extra challenges by doing too much for her.

The term is enabling.

The effects are still being felt at home.

I am an unlimited resource in her mind.

Her wallet, her taxi, her maid, her slave..

In my mind, my time of sacrificial lamb is over.

I have gotten her where she needs to be.

It’s up to her to keep up.

This is not an easy place to be.

There will be stories.  They will be ugly.

Sometimes, when you bend over backwards, you break.

I am NOT going there,

and neither should you.

SEIZURE MAMA

 

 

Peeling Off A Drug

Every SEIZURE MAMA post I have written so far has been about the past.

This one, however, is occurring in “real time.”

I wanted to share a tiny part of our twenty-four-year journey with you,

so you could get a sense of our anticipation and anxiousness.

(I DO NOT WANT FEEDBACK ON THIS. You are an observer only.)

 

Rose has been on this particular drug for twenty-one years now.

It has been her friend and her enemy.

When all other combinations failed, she went back up on this one.

It helped with the seizures, but there were costs.

Everything slowed.  It was sort of like changing water to molasses.

Why now?  She is working and driving.

Her grades were good for her first semester away from home EVER.

Good is the enemy of great.  Things are good, but the struggles are still here.

Think of it as always having to walk uphill…never on level ground…never downhill.

So STARTING TOMORROW, we will be peeling off this friend/foe drug.

It will not be coming back for various reasons.

If there is a seizure, one of her other drugs will be increased.

It is a tiny dose, not even in therapeutic range.

But it has been her security blanket medication.

Rose’s brain has had this molecule for twenty-one years of her life.

She is scared and excited.  She needs this.

Damn she is brave!

SEIZURE MAMA

 

The Hard Parts

Since I am writing this for other mothers, I must be totally honest.

There are parts of Rose’s story that still make me weep.

To write this book, I have most of her medical records. Now that she is an adult, she must get some that are missing from our files.  There are some gaps that need to be filled in.

We have thousands of pages and hundreds of films from scans. We have calendars and charts and spread sheets. We were desperate to keep every shred of information in case it held a clue to her cure.

I refer to these records before I write a story. I do not put in all the details. It would be cumbersome to read.  I do not understand much of the terminology. It was a constant struggle to take in all the information.

Sometimes, when I read these pages in the records, it is like I am seeing it for the first time.  I guess I just could not process everything while all the trauma was going on. I read  from her last tests on Friday afternoon. I read them until I could not see through my tears. I had to walk away from the desk.  It was like all the light left the room.

I bet you know what that’s like.

Rose is so brave. She marches straight toward the future with unwavering courage. I must be brave too. Not for me, but for you, Another Mother is your name.

I have to see this through for you. So I will keep going. You may need us.

So I will return to 2002 and  2012. I will finish what we have started. It gives us purpose. I promised Rose that I would write down her stories to share them.  Her job now is to get on with her life. She is fearless, so I must be, too.

SEIZURE MAMA