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

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

 

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.

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