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

 

Gilligan at the Lab

One of Rose’s early seizure medications required monthly lab work to check blood levels.

She has always been a passive patient. I did not expect her to resist any treatments based on prior experience.

So I was surprised when we had a struggle getting some blood drawn at the local hospital.

We waited in the waiting room to be called. I thumbed through magazines, while Rose sat near the television.

When her name was called, I picked her up to head back to a room.  She squirmed, so I switched her to my other hip.  The lab technician was a middle-aged man. Since she was small, she was positioned lying down on a table for blood to be drawn.

“No, wait!” she said.

“But we need to get your labs done. It’s our turn.” said I.

“No, wait! ” she yelled.  Rose began to squirm and cry and point at the door.

The man asked if he should tie her down to the table. Now, mama wanted to yell.

I explained that she usually did not resist labs. I also pointed out that if we “tied her to the table today”, we would have trouble just getting her in the room next time.

I took Rose back out to the waiting room. I calmly resumed looking at magazines, she went back to the television. I nonchalantly told her to let me know when she was ready to get her labs done.

I kept peeking out from the magazine, watching her. What was different about this time?

It was not long before she came and stood beside me. I glanced up from my magazine.

“Ready.” she said.

I informed the receptionist at the desk that we were ready to try again.

Her name was called. We went back into the room. She lay on the table. The blood was drawn without incident.

As we were walking back through the waiting room to leave, Rose pointed to the television and said, “No more Gilligan.”

She did not mean she wanted to “wait” to get the blood work done.  She wanted to go back to the waiting room and finish watching Gilligan’s Island.

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

Mama gets to Ride in the Ambulance

Our whole family went to the mountains for the weekend.  The weather was lovely. We were all so happy to see spring arrive. It was like a celebration. We wanted to stay out in the sunshine all day long.

Rose and her brother were playing catch in the back yard. There was a lot of missing on Rose’s part, so there was a lot of running involved. We were just about to pause the game for a rest when Rose dove into the grass. We all gathered around her while dad went to get the emergency bag.

We used one type of emergency drug after the first seizure. We used a double dose of the second type after the second seizure, which was longer. When the third seizure started, we called 911. Rose was heading into status epilepticus. We weren’t sure we could safely use any more of her medications.

Her seizure activity diminished before the EMTs arrived. Rose was still unconscious and bluish, so we figured it was a good idea to transport her for oxygen and maybe some injected anticonvulsants.  It’s always a comfort to have some professionals around. Well, for the parents it is.

Rose has never been thrilled to wake up to the strange faces of folks in uniform. Some of these occasions have been traumatic for her. It’s always best to see a familiar face after a seizure. It cuts down on the post- ictal confusion. Sometimes she can’t see for a bit after a seizure. I know that is scary.

The nice, young men loaded Rose on a stretcher and bounced her down the backyard and into the ambulance. I tried to explain that Rose would need me when she came to. I was informed that only the patient could ride in the back. It was against regulations they said. Rose was not a minor. What could I say?

Just as the ambulance doors were closing there was a loud, She-Hulk shriek from the vehicle. Then there were sounds of a ruckus inside. Sometimes Rose wakes up meek and pitiful, while other times she comes to like a raging bear disturbed from hibernating.  We knew quite well what was going on in the back.

The doors flew back open and a head popped out. One of the nice, young men was waving me over yelling “Mama, mama, mama.”  I had no choice but to go against policy. I couldn’t let Rose hurt the poor men. So I climbed up into the back for my first ever ride in an ambulance.

I do hope it will be my last. The benches alongside the stretcher are very narrow and unpadded. I bounced along holding on to Rose and the stretcher. She was still trying to hit people. I had to get in her face and sternly say “No Mam!” several times.  This lets her know I mean business and that she is being rude.

We spent a few hours in the Emergency Room of the nice, new hospital.  Rose rested. She was given something to stop the vomiting which sometimes happens during or after a seizure. Glad that didn’t happen during my ambulance ride. That would have spoiled it for sure.

SEIZURE MAMA

 

 

 

 

The Slow Motion Seizure

This was Rose’s third stay in an Epilepsy Monitoring Unit. We knew the routine but we also knew there may be surprises. Come what may, it was time for answers. We needed to know where these seizures were coming from. It had been speculated that the hotspot was in the left parietal lobe of her brain, but there were no clear results to prove this.

What we had been through thus far in EMU was referred to as Phase I. The EEG electrodes are glued onto the outside of the skull in specific locations. Each has a different color. They are all electrical leads running to a monitor. Each picks up the electrical activity of its little patch of brain. The results look like squiggles on a long musical scale. The trained EEG-readers can tell where the abnormal activity is coming from by reading the spikes and peaks on the lines.

We had never considered proceeding to Phase II. That involves opening the skull and placing the electrodes directly on the brain. Rose’s dad and I had decided that we would not proceed to this next step without at least knowing which side of the brain the seizures were coming from. We were not going to make this decision for Rose. If we did get results that pinpointed which side was the source, Rose would decide what to do next.

The test we needed was called a SPECT. It required that a radioactive tracer be in injected during a seizure. This dye shows up on a scan so that the source and path of the seizure’s progression can be detected. We had tried to get this done at a local EMU, but the specially trained technicians only worked from seven AM to seven PM on weekdays. If the patient had a seizure during the nights or weekends, no technician was there to inject the tracer and immediately run the test. Our Rose had her seizure outside the window at the other EMU, so we did not get a SPECT.

We were in the sixth day of our stay at Mayo. Her drug levels were low or close to zero. She had had two quick seizures. Everyone was anxious about catching the next one. It was strange to be actually hoping for a long seizure, but that is what we needed. Everyone was on high alert. There was a button for us to push if we thought she was starting to seize. We did not take our eyes off of her.

Suddenly the nurses and technicians rushed into Rose’s room. We looked up puzzled. Had one of us pushed the button by accident? They turned on the monitor in her room. the screen lit up with squiggles. We paused and held our breath. Slowly Rose’s eyes went left. Slowly she stiffened. It was like watching everything in slow motion. The seizure began to creep across her face and down her torso. The nurses injected the precious tracer.  This was finally going to happen. After all these years, we were going to know where the dragon hid in her brain. Maybe now, we could stop it. We had hope.

SEIZURE MAMA