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.






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.


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.



Peter Pan at the Mayo

BACKGROUND: Rose had to go home-bound the last semester of her senior year in high school.  It was a hard call to make. She was very disappointed to not be going to school, but the seizures were frequent and strong. We felt it would not be safe for her or fair to the school.

After the “Knock-out Rose” seizure during February, which occurred in the school driveway during her horticulture class, her face was torn up pretty badly. Her brian and her face needed some time to heal. We all needed a new plan. The drugs she was on were clearly not working. The added stress and excitement of being a senior were adding to the triggers.

We went back to an Epilepsy Monitoring unit near home in May for ten days. We had hoped to get a SPECT scan to pinpoint the source of her seizure activities. We came home without results, which is another story. Because we had taken this step without gaining the needed information. We got a referral to a Mayo Clinic.

STORY: We were finally at the MAYO! We had brought ALL the notebooks of Rose’s medical history and ALL of her MRI films. I had read and highlighted what I thought were the major points in ALL her doctor and hospital records. We had studied her eighteen-year medical history like we were taking an exam on it.

We had compiled concise lists of her numerous drug combinations complete with the seizures and side-effects that resulted from each.  Her dad had made spread sheets. I had made charts. We knew we had to be able to have all her information at hand to quickly produce what was needed.  It had taken us months to prepare for this trip.

I have never been so impressed with a place in my life. It was a medical mecca!  If we were EVER going to get help, it would be here. Hopes were high. We had enjoyed the drive across several states. We had even stopped at a zoo and botanical garden on the way. We were in high spirits.

After the complicated, but efficient, check in process; we were interviewed by numerous neurology specialist BEFORE seeing the FAMOUS doctor that we had an appointment with. Rose was examined over an over… finger  to nose…walk a straight line…watch by finger…push down my arms… So many questions. The exertion and excitement made us stumble at times, but we felt they had a full picture of Rose’s history when we were done.

After all the preliminary exchanges of information, we checked into one of the hospitals. The room was large with a lot of light. We were relieved that is would be comfortable for our stay. It is hard not to  feel trapped in an EMU. You aren’t there for rest. You are there for results. That means that the more seizures that occur, the more data you will acquire as to their origin.

Rose’s dad and I had learned from experience at other EMU’s to tag-team these events. We took turns staying with Rose. It is a very stressful time. The patient is weaned off his/her medications as quickly as is safely possible to encourage seizure activity. Electrodes are glued to the scalp at precise locations to pick up the electrical activities of the different areas of the brain.

During a stay in EMU, the patient has a long ponytail of wires running to a receiver box which is worn in a harness. This is cumbersome. The patient cannot shower or wash their hair until the testing is over. The head is wrapped in gauze to protect the wires and hold them in position. If one electrode comes loose, it shows up on a monitor and a technician has to come and re-glue it in place.

Rose handled the inconvenience of a colorful, wire ponytail and harness like a champ. This wasn’t her first rodeo. She enjoyed her”spa treatment” with wires. She has always been a compliant patient, even when she was tiny. She did not mind missing showers either. Win, win.

We did hit a snag in compliance of safety rules when it came to a contraption we called “Peter Pan.” This was a safety harness on a track along the ceiling.  It had cables that came down from a dolly which rolled along a track that ran from the side of the bed, across the room and into a private bathroom. The harness reminded me of something one might wear on a Zip-line.

Because patients in the EMU are being weaned off their medications, they are a fall risk. It was expected that the harness be worn anytime the patient got out of bed. Rose was out of bed frequently. For the first several days we made it a game of being Peter Pan to go to the bathroom. She was helped into her harness/costume and she  semi-glided/flew into the bathroom. The harness then had to be removed to actually use the bathroom. Then the harness had to be put back on again to go/fly back across the room to get back in the bed. Now the flying part was enjoyable. She would pose as Peter Pan as I gave her a gentle nudge and sang the Peter Pan song.

By day two, all thrill was gone. Her dad and I were tired of buckling and unbuckling the harness. She was tired of getting it on and off. I was really tired of singing the perky Peter Pan song. We no longer loved Peter Pan. This was unfortunate because with each passing day, her risk of seizures had increased. We were now at high risk and hated the harness. I wished we had delayed playing Peter Pan until a few days in. The harness became an issue.

At other EMU’s there were places a child could go, with equipment in tow, to get out of the room and have a change of scenery. We could use trips to the “game room” as a bribe. Here, Rose had to stay in the same room, all day every day. She had read her magazines, watched her movies and played all the games we had packed. We still had days to go.  The harness just added frustration.

Finally,  we spoke with the nurse in charge and assured her that one of us would be with Rose at all times and keep a hold on her every second that she was out of the bed. This was nothing new. Holding on to Rose. It was actually a habit we had. Staying close to her, holding on to her. Fear of falling was nothing new.  Only the harness was new. As I said this wasn’t our “first rodeo” ,  but we were sure hoping it was our last.




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…


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.




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


Ugly Doll Rescue

The first time this happened was in a giant toy store.

We looked down into a tub full of stuffed animals

to spy a small doll in a red checkered dress with messy blonde hair.

Maybe it was that messy blonde mop that made Rose relate to this doll.

She picked it up and turned it over.

The mouth was twisted and the eyebrows raised.

It was an alarming face. I remember thinking that it looked like it had had a stroke.

Maybe I said this. I do not remember.

The doll never went back in the tub. She went home with us.

Her name is Crystal.

The next one was not as alarming.

She had a cute little head band and outfit.  I think the facial expression was the manufacturer’s attempt at a yawn.

Her name is Dorothy Gale.

Then came the pouty-faced brunette with tear streaks down her face.

She was unhappy in the store. We must take her home, so she will quit crying.

Chevrolet is still crying.

The fourth was the tiniest one. She is was wearing a bonnet.

Her smile is just a little crooked.

She has eyes that look as though she just finished crying, but stopped because she spotted someone she loves. It melts your heart.

I do not remember her name. I am sure Rose could tell you.

There was one last attempt at a rescue.

It was in a toy store in a mall.

Rose picked up the doll off the shelf.  It was supposed to talk, but when Rose pushed on her tummy, a horrible, board-scratching shriek came out.

Rose dropped the demonic doll and ran out of the store.

That ended the mission of rescuing ugly dolls.

This post is in honor of Rose who just spent her first night in a college dorm.






Walking Back Through the Fire

I may have to stop the book for a while.

Writing it is hurting me.

I am trying to make it real for my readers,

but that means re-living all the pain myself.

It takes courage to walk back through the fire.  It’s like burning again on the inside.

I will continue when I feel strong enough.

I plan small doses, even though the flow may be off.


Pay attention to every side effect.

Write everything down.

Keep track of all drug changes.

Get help when you need it.

Take care of yourself.

Mama trumps doctor everyday.

Seizure Mama

No Words better than Wrong Words

Rose had seizures everywhere.  There was no secret to be kept.

The stares did not bother me, most of the time.

I knew that the observers were puzzled and concerned.

What I dreaded were the comments.

Have you tried…?  My uncle had seizures and he…  You should take her to…

These strangers did not know how long we had been struggling for a solution.

They were just trying to help, but…

When Rose was home-bound from school, we took her to a little restaurant with a train running around near the ceiling.

We knew she would like to watch it.

She sat wrapped in a towel to keep her from getting chilled.

She had bruises on her face from a previous seizure.

We sat down in a booth (always a booth) near a big table full of policemen eating lunch.

My child, bruised and pale, wrapped in a towel, not in school.

Were we going to be questioned?  Child abuse?  Neglect?

No need to worry.  Rose had a seizure.

I lay her down in the booth with my purse under her head.

We sat and waited for her to come to.

As a lady was leaving, she walked over to us.

I was prepared for a comment or question.

Instead, she just patted my shoulder and silently walked away.

Thank you wise woman.  All I needed was a love pat.

No words.

Seizure Mama


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