Story #28: The Epilepsy Monitoring Unit

It was past time to put all the cards on the table. We needed answers about where these seizures were coming from, why they were occurring, and what triggers were unleashing them in Rose’s brain. It seemed we had been trying to put together a puzzle without looking at the picture on the box. Would a stay at an EMU finally reveal the whole picture? Could we handle the whole picture when we got it?
Would this epilepsy monitoring unit give us the answers we needed? Would the electrodes finally locate the source of these electrical storms inside Rose’s brain? I felt like these hundreds of seizures were clearing pathways through Rose’s brain, so that the seizures could go farther and faster, like there was some kind of cumulative effect.
I was truly afraid of weaning her off her medications. Would these seizures be allowed to run unhindered through her young brain, or were they doing that all ready? All we knew was we were in the right place to get answers. We had faith in this hospital and its doctors and nurses. That in itself was a great comfort to us, even to Rose. We needed expert help and now we were closer to getting it. Risks or not, this was no life for Rose. She needed fun instead of fear.
The technicians that glued the electrodes to her head treated it like a spa treatment. Rose emerged with a lovely, long ponytail of colorful wires. She felt pleased and pampered. A gauze cap had to be wrapped over her head to keep the electrodes in place when she lay down. No matter, her flowing ponytail was a hit. The other end of the electrodes were hooked to a box in a pack that she wore allowing her mobility.
During our week-long stay, Rose had six seizures. It took four days of weaning down on her medications to get them started. Those last days were scary. Once the data was collected, some medications were returned, but on low dosages. I knew these dosages were too low. I showed one of the doctors our chart which showed that Rose had experienced a long and strong seizure on the same particular mix and dosages that Rose was leaving on. The dosages stayed low so a long seizure followed shortly after we arrived home. Emergency medications were used. A call was made back to the EMU, dosages were then raised.
I am a doctor’s nemesis. I am the mom with the clipboard and pen. Once during our EMU stay, a senior doctor came into Rose’s room with a group of medical students. I rose from my chair as they entered, clipboard and pen in hand. “Oh no!” slipped from the doctor’s lips as he saw me. I stood in the circle with the young doctors as they discussed Rose’s case. Mama and the medical students formed a circle around her bed, all of us trying to learn;  they to save the world, me to save my daughter.

Seizure Mama speaks to parents:

Weaning off medications is a scary necessity in the Epilepsy Monitoring Unit process. Without the medications masking the brain’s electrical activity the electrodes can detect what is happening. In the Phase I process the electrodes are glued to the outside of the skull. These sensors show the brain’s activity as squiggly lines on an EEG. These external electrodes cannot detect activity deep in the brain. This Phase I process lets your team see what is going on in the brain as the patient is doing different activities, including sleeping. Do not be afraid of the electrodes and glue. The glue does wash out eventually. You may need to use an oily substance, like mayonnaise, to remove it.
Do not expect answers right away. The team must meet together and discuss the results before considering the next course of action. This may take weeks. Be patient. Take comfort that more trained professionals are trying to help your child.

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

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