Chapter 47 of Seizure Mama and Rose by Flower Roberts ( Amazon)
The team of specialists were to meet to discuss Rose’s case mid-July. They would look at all her records and tests and collaborate on her case. Then the famous lead physician would call with results and recommendations.
We waited impatiently to hear the news. 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.
After the phone call, I cannot remember how many days I walked around in a fog.
Seizure Mama speaks to parents:
THEY WERE WRONG!
The best and the brightest experts in their field still aren’t God.
Was it Rose’s new drug from Germany? Was it our 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 began to improve after that.
So if you get a no-hope diagnosis, remember Rose.
There is always hope. Even if it is just 5%.
Maybe this was supposed to happen to us, so when it happens to you, you will not lose hope. I wish I could send a message back to myself 10 years ago to tell me to hold on. Never would I have imagined that Rose would graduate from a university. Keep the faith.
Follow-up for Chapter 46 of Seizure Mama and Rose by Flower Roberts
The memories from this time are clear even though it was years ago. I guess we were all on high alert and ready for a new remedy. Rose told folks that if it weren’t for that time in the hospital, the trip was like a vacation.
The Mayo in Minnesota was amazing. We knew if there were better treatments for Rose, they would know about them. I watched and listened to everything. These folks were the best of the best. I wanted to absorb every bit of information I could.
Things were not going so well for an old man named Albert across the hall from Rose’s room. Albert had dementia and was non-compliant. We heard his name hundreds of times as his family and the staff tried to bring him back to his former-self. It was sad to be a witness to such a personal tragedy.
When we got finally home, we were met with our own sorrow. Our precious dog, May-I-Stay, a stray, had injured her back again. I knew this would require weeks of doctoring and carrying her in and out of the house. I knew my back could not handle that again. She stayed at the vet for over a week. We set an end date for her treatment. Rose and I went daily to squirt gravy into her mouth and pet her. If she could not walk and void her bladder by that date, we would put her down. I will always cry about this. She was so happy to see us that day. Our neighbor went with us to say good bye.
May was old and I was too tired and frayed and frazzled to help her through many weeks of healing. Our family had an uncertain future at this point. Were we returning to the Mayo for treatment? Would we be getting a seizure dog soon? Would Rose be having surgery?
I do believe that something happened during the Slow Motion Seizure. Maybe Rose subconsciously realized an aura inside her that she had been unaware of previously. Maybe her brain became aware of a pathway. I do not know exactly. Something in her brain began to change.
Those weeks of waiting were nerve-racking but hopeful. We knew that the best neurologists in the country were going to meet and discuss Rose’s condition and treatment. Each day was long. I was distracted by the memories of the Mayo and imagining the possible new treatments. I was not expecting the news we got when it came.
Mama Flow (in waiting)
Chapter 46 of Seizure Mama and Rose by Flower Roberts (Amazon)
At this point Rose was nineteen years old. She had graduated from high school. Her seizures were not well controlled. There was no aura, so she usually fell face first and got hurt when a seizure occurred. Seizures had been part of her life since she was eighteen months old. We had tried eleven different medications in many different combinations.
We needed some expert help to get her so she could drive a car and be independent. It was time to put all the cards on the table and devise a plan for Rose’s future.
The summer after her high school graduation, we took Rose to a famous Epilepsy Center. We drove across the country to get there. We made a vacation out of it. We visited a famous zoo, a botanical garden, and an aquarium along the route.
We arrived at this giant state-of-the-art facility. It was the epitome of efficiency. The place was amazing. The doctors listened to her history and read her medical records. They looked at all her previous scans and films.
Rose was checked into their Epilepsy Monitoring Unit. They were trying to get that ictal-SPECT that we did not get during our stay at our favorite hospital back home. We hoped that when this was done, we would finally have all the pieces to this puzzle. We would have a clear picture of what was happening in her brain.
This was Rose’s fourth 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 origin of the seizures 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 with leads running to a monitor. Each electrode picks up the electrical activity of its point in brain. The results looked 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, which 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 two tests we needed were called SPECT scans. Each required that a radioactive tracer be in injected twice, once during normal brain function and once during a seizure. The dye shows up on a scan so that the source and path of the seizure’s progression can be detected. We had gotten the inter-ictal(between seizures)scan done at our favorite EMU, so what we needed here was an ictal-SPECT(during a seizure) for comparison.
On the sixth day of our stay at this famous hospital. Her drug levels were low or close to zero. She had experienced two quick seizures. Everyone was anxious about catching the next one. It was strange to be actually hoping for a long seizure, but that was what we needed. Everyone was on high alert. There was a button for us to push if we thought Rose 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.
There was so much more to the day of Rose’s graduation than appeared in those pages of Seizure Mama and Rose. The various scenes play out in my mind clearly even though it was a decade ago. This was an event that we doubted would ever happen and here we all were, the whole family, celebrating this milestone together.
We walked Rose to her designated spot in the graduation line-up inside the building. Her dad, her brother, Rose and I were greeted by many friends and faculty. We peeked through the courtyard window to see the huge banana tree that Rose had given her beloved horticulture teacher. It was special to see that a stand-in for Rose had been present at the school while she was home-bound.
My husband had set up a tent at the back, right top of the stadium. Our four elderly parents needed the shade. Everyone had cold bottles of water. I could see the family and they could see me. At first, I was alone in the rows of folding chairs for the chorus. When they marched in, one of my former students sat beside me. She needed me there. She was in trouble again. Her skirt was too short. She would not be allowed on stage. I had to talk her down, just like old times in middle school.
The graduates marched in. Rose sat on the front row. I could see her every move. I could watch Rose. The family could watch me. All was well. We could relax and enjoy this miracle together.
My seat was at the base of the steps coming off the stage. I had my blogging camera. I got perfect photos of Rose’s friends and my former students. It was a parade of our past flowing by in a sea of green. My heart was full.
After the ceremony, we talked to dozens of dear friends. There were smiling, familiar faces everywhere. It felt so good to be surrounded be so much love after our isolation. I felt like the universe had opened up and welcomed us back in.
Treasure your good times. Take pictures. Talk about them. Write them down. Relish them. They are gold to the soul.
Mama Flower Roberts
Chapter 45 from Seizure Mama and Rose by Flower Roberts (Amazon)
Mama: Stage Right
Rose was determined to walk across the stage at her high school graduation, despite being homebound the last semester of her senior year. Her dad and I were afraid there would be too much excitement and it would be too hot for her to sit in the sun for hours. But our Rose gets “bulldozer” determined, so we got out of her way.
I was allowed to sit up front to the right of the stage with the chorus.I had a perfect view of Rose’s seat in the front row. So there was Mama with her camera sitting at the bottom of the steps where each graduate descended after receiving his/her diploma. I took pictures of all Rose’s friends and my former students from my seat. Rose made it across the stage and down those steps without incident.
Our entire family had set up a tent at the back of the stadium. We heard cheers go up in the back from her brother, cousins, grandparents ,aunts, and uncle as she marched up, across and down. We had made it, again. Mama got to witness it all from the best seat in the house. I did not, however, sing with the chorus, even though I felt like singing.
The graduates filed out of the stadium at last. My group at stage right was to follow behind them. As I marched out, another cheer went up from our familiar tent in the back. I did a little victory jig to celebrate with our family. That’s when I glanced back. Much to my chagrin, the honored officials in their robes from front-and-center stage were in the procession right behind me.
Mama and her camera had done a little victory dance in front of the dignitaries. I am sure they wondered why a crazy mother had been allowed in the procession. We had pulled it off again. Rose in a cap and gown instead of a ball gown. Hooray!
Seizure Mama speaks to parents.
Your child needs great memories. Get out there. Celebrate every victory. Go ahead and dance in front of the dignitaries.
( My daddy told me this when my children were little and I was exasperated.)
Mama Flower Roberts
Chapters 42 and 43 of Seizure Mama and Rose are inseparable in my mind. The ups and downs blur together as I remember how desperate we were to help Rose find the source of her seizures and how determined we were to get her to the prom. It was a double time crunch.
We entered the EMU with fear and hope. The seizures kept coming. Rose was getting injured by falling. She was pulled out of school because of them. We knew that surgery may be her only hope. The source of the seizures had to be found for this to be an option. The two SPECTS were necessary to get that information. One without the other was useless. A comparison of her brain between seizures and during a seizure was critical. The ictal SPECT needed occur while the trained staff was there to administer the dye and do the scan.
There have been many occasions of TEETER TOTTER since this one. Times when events take you up one minute and down the next. Hopeful times followed by defeated times. This was so stressful. We wanted those results so badly. Rose needed something to change.
Rose not having seizures at the right times (7AM -7PM weekdays) was disappointing to her medical team and her family. Her time was up and no answers were divulged. The only thing we could do to go to move forward was prepare to go to the Mayo later that summer.
In the meantime, there was a ball to get our Cinderella to. We all focused on that in the end. Everyone was determined to get Rose out of that hospital in time for her prom. Her hair must be done! Her corsage must be ordered!
How could she look so beautiful after such a disappointing and stressful time? That’s just Rose. Her resilience is shocking. She continues to amaze me. I am truly grateful for her strength.
I am thankful we had this happy event to distract us from the failure to get results we needed from the EMU.That is how life is parents. Especially with a fragile child. The ups are super high and the lows are crashing and painful.
I am still riding that Teeter Totter. I guess I always will be. Savor the ups. Hold on for the downs.
This is life you are doing here, not a dress rehearsal. Jump on!
Mama Flower Roberts
Chapter 44 from Seizure Mama and Rose by Flower Roberts (Amazon)
Rose’s last trip to our favorite EMU occurred the spring of her senior year in high school. We were all hoping to get the test results early enough for her to get out to attend the prom. Rose’s brother was coaxed into taking her,so he planned to come home from college that weekend to be her escort.
Her dreamy satin dress had been purchased and altered, his tuxedo had been rented. All she needed was to be released from the hospital in time to attend the event. We thought that surely two weeks was enough time. We never dreamed we would cut it so close.
The story of the scans is a separate story. It deserves its own pages. Rose did get out of the EMU in time for the prom. We checked out on the Thursday afternoon, before the prom on Saturday. Rose did get to go. She did get to dance. Her brother was there to watch over her. She had her emergency medications in her tiny purse. We dropped Rose and her brother off at the Civic Center and we went to wait at a restaurant across the street. Her father, my sister and I were only a phone call away. We had pulled it off in the nick of time.
Rose looked beautiful. Her hair had roses in it that matched her salmon-colored dress. The bodice was covered in dangling sparkles. The corsage on her arm contained roses and baby’s breath. Our Rose was a princess and a warrior. While her classmates had spent the week getting their nails done and going to tanning beds, our Rose was in a hospital with electrodes glued in her hair.
So after nine days in the hospital, Rose goes to the prom. From hospital gown to ball gown. That is how Rose rolls.
Seizure Mama speaks to parents:
Here is an example of balancing needs and wants. Rose needed new medical tests to get information to treat these terrible seizures. We were not going to wait any longer. When the opening in the EMU schedule came, we took it. Rose wanted to go to her school prom. We planned for it and she went. We could relax because her brother was with her and we were right across the street, ready to swoop in. The faculty and her friends knew where Rose had been the previous weeks. No crown needed, she was queen.
Chapter 43 from memoir, Seizure Mama and Rose by Flower Roberts (Amazon)
After the “woodstove” seizure we scheduled another week at the Epilepsy Monitoring Unit at our favorite hospital. This was our third trip to an EMU. We knew what to expect. Rose was homebound from school.She was nineteen years old. Her senior project was about all the types of epilepsy surgeries and their success rates. We all knew that surgery might be her only hope.
All the stops were pulled out for this visit. We needed a special test to pinpoint the source of her seizures. The procedure required two sets of data for comparison. One SPECT would be done between seizures(inter-ictal) and the other would be done during a seizure. I will not pretend to understand all this. I know that to get the pictures needed, radioactive dye has to be injected before the scans.
We got the first scan done. I guess this was like a control in an experiment. This was the “normal” picture of what was going on in Rose’s brain. The hard part was to get the next data. A seizure had to be caught early, the dye injected, and the scan done immediately afterward. The technicians who did this scan were highly trained, but this hospital only paid the specialists to work from 7AM to 7PM weekdays. This meant that if Rose had a seizure outside of that window, it would be wasted. No point injecting the expensive dye; no one would be on call to do the scan.
As luck would have it, Rose had many seizures, but not between 7AM and 7PM. We left without the results that we needed. All involved were disappointed – her doctor, her beloved nurse Micheal, and the staff. They all knew Rose well at this point and understood that she was in danger. We all knew that there was no hope for a healthy future without some new treatment to stop these terrible seizures.
We did start on a new drug after this stint at the EMU. I had read about a totally different drug that had just come out in Germany. I asked about it to someone involved with Rose’s case. This new drug worked with the potassium channels of nerves, instead of the usual sodium channels. I do not know anything about pharmaceuticals, but I knew the twenty plus drug combinations that we had tried thus far were not working. We were ready to try any new drug from anywhere.
This new drug was ordered and added to her cocktail. We were desperate to help Rose. She was to the point of wearing a bike helmet during certain times. We couldn’t prevent these seizures, but we could protect her angry brain.
Seizure Mama speaks to parents.
Going to an EMU(Epilepsy Monitoring Unit)is a scary step. We were amazed at the highly skilled people who worked there. We made three trips to the EMU at our favorite hospital in a neighboring city. The doctors and nurses there knew how to put us at ease during this stressful procedure. Nurse Michael is one of Rose’s heroes. His visits to her room were like rays of sunshine. The team of neurologists really study the patients while they are in an EMU. Although we did not get the test results we could use for surgery, we did get information that was used to make better drug choices. The new drug from Germany was a game-changer.
This ‘Blood on the Rocks’ event was a turning point for many reasons. I had spent years hovering over Rose to keep her safe, only to witness her near-death experience just feet away from me in our own home. I realized that Rose’s safety must come from inside Rose’s body and brain, not from her mother.
Another revelation was that I was damaged. I had absolutely no control of my body and brain during those moments. The scream started and I could do nothing but let it pass through me. It was not a catharsis or purge of emotions. It was sheer brokenness.
Neither Rose nor I were safe. I had been so focused on saving Rose, that I did not notice my own unanswered needs much less wants. I am seeing that now as my sister takes care of my ninety-year-old mother with dementia. Care-giver burden is a dangerous thing.
Look in the mirror moms and dads. Is your hair coarse? Is your skin color off? Have you gained or lost weight? Look into your eyes, are you still in there? How is your gait? Do you pick up your feet or shuffle? When is the last time you laughed out loud? Are you still fun to be around, or is time with you a pity party? Do you sigh a lot? Ask your real friends if you have changed. They will be happy to finally talk honestly with you.
The rule on airplanes is that the parent puts on his/her oxygen mask first. That is so he/she can take care of your child while breathing. Are you doing that? Who will take care of your fragile child if something happens to you?
This is not about self-care…this is SURVIVAL. Save yourself! Get support. Ask for help. Demand it if necessary.