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

The Same, but Different

Any medication change brought its own changes in Rose. Sometimes she got lethargic. Other times she got aggressive. Some medications caused headaches Some caused nausea. One even greatly increased her appetite.

But there is one medication we all know by name. It is on her charts as an allergy. It gets its own story because of all the trouble it caused. You remember what kicked you while you were down. This drug hit her hard even before she fell and she remembers it.  This is the story of our experience with that medication…and its twin.

When a person has had seizures as long as Rose had them, the medication choices get more and more limited. We had all ready tried the main anti-convulsants in various combinations. If they worked in the beginning, some stopped working for her. Most drugs never worked or had horrible side-effects.

Our hopes for Rose being seizure-free began to dwindle, so our tolerance of side-effects became greater. I didn’t care if the medications made her blue and bald, as long as they stopped her seizures…or so I thought.

We slowly added this new drug to her cocktail. She got mean. The more we added, the meaner she got. It was like the drug had magnified teen-angst by ten. Rose argued about everything. She was totally uncooperative. I remember telling a friend at church that if our house caught on fire and I screamed “The house is on fire. Get out!” that she would probably respond ” No. My room won’t burn.”

I was with her almost all of the time, so I was her target. It was hard to be verbally bullied by a normally nice person. She had been a drugged bully before, but had calmed down as her brain adjusted.  After weeks of abuse, I was hoping for things to either improve with her disposition or get worse with some side-effect. I got my wish. Things did start to deteriorate, but we held the line because we knew we did not have many options left.

Right about this time our insurance changed. We could no longer go to the small pharmacy where everybody knew our names. We had to move all our prescriptions to a big box pharmacy. When I picked up the new prescription of “Mean Teen” medication, I remember distinctly the pharmacist asking if we had questions about this drug. My reply was something like, “No thanks, we know all about its side-effects all ready.”

I put the new bottle in her medicine basket with all the other bottles. This drug was one that the pills could be cut in half. Rose’s dosage required that she take both whole pills and half pills.  The tablets were elongated and peach colored. Every Sunday evening I would fill up her weekly AM and PM medication organizer with all her different dosages for morning and night. She had a separate, one compartment per day organizer for the afternoons.

For efficiency, I would cut many tablets in half and put them back in the same bottle with the whole pills. That way I did not have to cut up pills every Sunday evening. If I cut too many before the refill. I just put two halves in the compartment instead of a whole.

Things began to change as soon as I started filling in with the new bottle of medication. The tablets looked the exact same. The name on the bottle looked the same, but something was different with Rose. I first used the new whole pills and the extra halves from the old bottle. This was probably a fortunate thing.

Rose began to wither. She lost her meanness, but also lost her spunk.  The changes in Rose were gradual, but noticeable. I was pondering on what could be going on. We had not changed medications. Why this transition?

The answer to this mystery came on Sunday afternoon, right before disaster struck. I will always be grateful for the timing. Otherwise, her dad and I would have been clueless. I sat down at the kitchen table to refill the organizers. I had run out of the halved “Mean Teen” pills, so I needed to cut a new supply. I pulled out the pill cutter and got busy. The pills, as I said, were the same shape and color as the ones from the little pharmacy, but they did NOT cut the same. I grabbed the bottles to compare them. The old bottle name ended in “-al” the new bottle name ended in “-ate”. The big box store had switched us to a generic form of “Mean Teen” without informing us. The pharmacist had asked if I had any questions. I did not because I thought it was the same drug.

I immediately alerted Rose’s dad to the switch and how I had discovered it. Rose was sitting at the table with us. Our conversation was interrupted by explosive vomiting. Then Rose hit the floor. The onset of the seizure was so fast and her convulsions were so strong that we knew we needed back-up. Her dad dialed 911 as I lay under the table in the vomit cradling her head in my arms.

Generics drugs are not the exact same. We had been here before. Not only can they have a certain percentage less or more of the drug itself, they also have different fillers. All this can make a difference. If I had paid attention better, this reaction may not have happened. I have to tell myself that the “Mean Teen” drug in any form was not a good drug for Rose.

 

I did call a person at the Epilepsy Foundation of America to report the look-alike generic. I also wrote a letter to the State Pharmacy Board to share the story and to suggest that generic drugs not be allowed to mimic the look of the brand-name version. This imposter generic could have caused serious injury to my precious patient.

SEIZURE MAMA

 

Blood on the Rocks

Background: I was teaching eighth grade science. I was fragile. I was constantly in pain due to an arthritic knee. My blood-work had many abnormalities. I never felt well. I had trouble sleeping. I cried a lot. I called the bouts of tears “emotional sneezes.”

I met with my doctor to discuss disability. We figured the root cause of my health issues was all the pain from my knee. I had a knee replacement in January. 

Rose had a seizure at school while I was home recuperating from surgery. She tore up her face on the asphalt while planting Knock-out roses during her horticulture class.

I worked very hard for six weeks to get fit to return to the classroom. I went back to teaching just as Rose went home-bound due to an increase in seizure activity.

This is the story of the turning point for ME. When I decided that I was not going to do anything else but try to get the right treatment for Rose.

As you read this, remember that we are fine now. This is part of our past.

I was sitting on the couch watching television. Rose got up from the chair to change the channel. There was a crash. She fell toward the right of the TV cabinet. Her head hit the heat shield behind the woodstove which is just inches behind the sharp corner. There was blood all over the rock hearth.

I always rush to her to help,but I couldn’t move. Her dad appeared. I was frozen on the couch. I was no longer in charge of myself.

All I could do was scream. It came from somewhere deep inside of me. It was not human, it was primal, from the past, from somewhere far away. It was like something shattered and an explosion of sound came through a hole from somewhere else. I couldn’t stop screaming.

I do not know what happened next. I was blind. Everything was whooshing out from me so that nothing could enter. It was like I was emptying my body of all its emotion and energy. I was exploding and emptying. The scream was so strong, I could not stop it.

My soul was screaming.

The heat-shield was bent, but I was broken.

After this event, I decided I was done with everything else in this world. I was doing nothing else. This had to stop. She was four inches from a fatal fall. Nothing else mattered.  I quit my job as soon as we had an Epilepsy Monitoring Unit appointment. I was SEIZURE MAMA full-time. I read everything from everywhere about seizures and epilepsy drugs.

It paid off.

To be continued…

SEIZURE MAMA

In the Wrong Line

We should have suspected something.  It was the only short line at the Duomo.

I should have wondered why I had to check my small bag before entering.

Everything was crowded and strange, so we just went with the flow.

We entered the door and immediately started climbing up steep stairs in a narrow passageway.

I do not do well in confined spaces, especially in crowds. Heights make my feet itch.

We continued to climb, and climb. The walls got closer together.  My tall son actually scraped his face on the rough plaster because the walls tilted inward.

I did not want to continue, but there was no way to turn around and go down.

Finally, there was an open landing for me to pull over and let others pass. It was then we discovered that we were in the line for the dome/cupola of the Duomo.

There were four hundred and sixty three steps(scalini).

Aside from my own fears of small spaces and heights, was my fear that Rose would have a seizure.  Her triggers were excitement, exercise, exertion, exhaustion…everything.

Here we were going up, up, up.

After my panic attack, we continued upward.  Finally, there was a place to exit out of the line to enter the inner base of the dome.  NO.  I had come this far.  I was not leaving my family.  I was not leaving Rose.

The last steps were actually rungs of a ladder.  When we finally popped out to see the city of Florence, it felt like I had entered heaven.

Our journey was over. We were safe.  I could breathe.

I will remember this for the rest of my life. That awful journey to the top. The relief and joy when we finally arrived.

This could be the end of a lovely story of bravery and perseverance. But there is more.

Relax it turned out fine.

We marveled at the sights and felt the wind in our faces. We hated to start down, but we knew the journey would not be as stressful and confining.

When we finally got out and sat down to rest, Rose looked a little flushed in the face. I told her she should take one of her emergency pills. She admitted that she had left them in the apartment.

Mama had another panic attack while the boys sprinted across Florence to get the bottle of medication.

All’s well that ends well.

SEIZURE MAMA

 

 

The Fear is Still Here

Rose is away at college, but the fear is still here.

I foolishly thought that it would leave when she left.

That she would take it with her, but I was wrong.

I was unaware of this until a friend pointed it out…

that I gasped “Oh, no.” every time the phone rang during our visit.

My phone rang while I was shopping yesterday.

“Oh, no.”

This fear did not leave because she did.

It is still here.

It does not belong to her.

It is my own.

Seizure Mama

 

Crash and Run

It happened again. This time in Food Lion.

I was standing at the checkout, when a loud crash startled everyone.

I held myself in place.  Fighting the instinct to run

toward the sound.

It was NOT Rose falling.  She was standing beside me.

This was NOT an emergency.

No 911 call for the dropped watermelons.

No blood on the floor, only red juice.

No need to run toward this crash.

She is safe by your side.

Stand still. Breathe.

SEIZURE MAMA

This is for YOU

My life has been funneled to this task.

It is almost like I am not allowed to start anything else.

I feel like Jonah running from God.

Jonah did not want to go to Nineveh. I do not want to write this book.

I have PTSD, for goodness sake.   Must I relive this trauma?

Yes.  Because you are out there.  Feeling like the sky is falling.

Afraid.   Alone.

And I understand your pain.  I know your fear. I know your loneliness.

If I turn my back on my past and try to forget this experience,

I am turning my back on you.

I cannot do that. Whoever you are.

I am here.

God bless us both.

Seizure Mama