Status in the Lab

Chapter 50 of Seizure Mama and Rose by Flower Roberts (on Amazon)

My son ended up in the Intensive Care Unit at our local hospital due to an isolated auto-immune event. He was transferred to our favorite hospital, which is an hour’s drive away. We made the drive back and forth every day. My husband and I tag-teamed for the three weeks while our son was in the hospital and rehab so that he was never alone.
I still had to teach my classes and labs at night at our local community college. Rose had to accompany me to my classes and labs during these weeks. We would visit my son each day and leave in the late afternoon to drive an hour back toward home and eat supper on the way. We would then go directly to the college. I would leave Rose in the lab during the lectures in the adjoining room. Then my students and I would enter the lab for another three hours.
On this particular night, Rose and I had stopped and eaten fast food on the way. Rose had gotten an ice cream float made with a red soft drink. Earlier that day she had bought a red drink from a drink machine in the hospital. It was a stressful time. No one was eating or sleeping well.
On this particular evening, I finished up the lecture and my class and I entered the lab. We happened to be dissecting hearts that night. There was definitely an aroma in the laboratory. Rose complained about everything stinking. I had just gone over the cat’s heart parts with the class. I asked Rose to help me put my demo cat back in the bag. As soon as she finished, she said she felt strange.
I told her to come around behind the front station with me and sit on the floor. She went into full seizure as soon as she sat down. One seizure finished and another started.
I alerted some of my students to assist me. Many were Certified Nursing Assistants taking classes to get into the nursing program. They knew just what to do. When the third seizure started I covered Rose with my lab coat and administered her emergency medication. The seizures stopped.
One of the students that assisted me sat on the floor beside Rose and cried afterward. She shared that her seventeen-year-old brother had seizures. No one had ever told her family about this emergency medication. They usually had to transport him to the hospital at times like this. This girl stayed beside Rose long after the lab was over. This young woman and the mother of one of my former students at the middle school stayed late. The two finally agreed to leave only if they could find a campus security officer and bring him to the lab. I truly appreciated these two women staying with us. I was exhausted before class even started and now I was totally spent physically and emotionally.
This was the event that led to Rose avoiding Red Dye #40. We remembered our neighbor’s beagle had seizures if he ate red colored food. Since that night in the lab, Rose has avoided red foods and has read food labels. It is amazing how many non-red products contain Red Dye #40. We believe that red dye had been one of her triggers all along. I wish we had figured this out sooner.

Seizure Mama speaks to parents:

First, we have learned that Red Dye #40 does affect the brain. Think of all the brightly colored foods that are marketed to children. Once you start looking at all the chemicals in foods, you start to wonder what the effects of those might be on a young body and brain trying to grow and develop.
Second, everywhere I go, someone knows someone affected by epilepsy. You are not alone. Many folks don’t share their stories until they connect with someone who will understand. Then the flood gates open.

WARNING: Misery loves company. Maintain your boundaries. You don’t need to host a pity party everywhere you go. Listen, share a story, maybe some good sources for information, such as the Epilepsy Foundation of America. Then gently remove yourself.
When I taught middle school I used to get very upset about bad things happening to my students. Rose would put my face between her hands and look into my eyes and say, “You are not their mama.”
Sometimes you have too much trouble of your own to be borrowing someone else’s. Remember whose mama you are. You may have a big heart, but you’ve got your hands full.

The Same but Different

Chapter 49 of Seizure Mama and Rose by Flower Roberts (Amazon)

Any medication change brought its own changes in Rose. Sometimes she got lethargic. Other times she got aggressive. Some medications caused headaches while others 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. When you are down, you remember what kicked you while you were lying there helpless. 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 has, the medication choices get more and more limited. We had already tried the main anti-epilepsy drugs 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 F 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!” Rose would probably respond ” No. My room won’t burn.”
I was with her almost all 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 Rose’s disposition or get worse with some side effect so we would have a reason to get rid of this drug F. I got my wish. Things did start to deteriorate, but we held the line because we knew we did not have many more drug options left.
Right about this time our insurance changed. We could no longer go to the small drug store 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 the “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 already.”
I put the new bottle in her medicine basket with all the other bottles. This drug F was one of the pills that could be cut in half if needed. 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 afternoon doses.
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 pills before the refill, I just put two halves in the compartment instead of a whole pill.
Things began to change as soon as I started filling in the pill organizer 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 her spunk. The changes in Rose were gradual, but noticeable. I was pondering 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 of this discovery. Otherwise, her dad and I would have been clueless. I sat down at the kitchen table to refill the pill 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 new 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. On the old bottle the drug name ended in “-al.” On the new bottle the same root 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.


Seizure Mama speaks to parents:
Generic drugs are not the exact same as brand name drugs. We had discovered this earlier with another drug. Not only can the generics 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 impostor generic could have caused serious injury to our precious patient.
Pay attention to all drugs all the time. Look in the bottles before you leave the pharmacy. We have had to hand back the wrong drug several times. Be alert. Be vigilant. Use a pill organizer and lock the bottles up in a filing cabinet. You never want to wonder where some pills went. These drugs are expensive and dangerous if used incorrectly.
We should have tossed this drug to the curb long before this event. Hindsight is 20/20. This drug’s side effects almost ruined my family. Desperation should not lead to destruction.

Enabling is Disabling

If a person can do something for themselves then he/she should do it for themselves. Enabling a child creates problems that would not have existed. PLEASE do not do more than is necessary as proof of your love.

The message you send by this is damaging. The person becomes dependent. They equate your love with your sacrifice. You will be tested.

I am adamant about NOT feeding wildlife. The animals become dependent on that artificial food source. They stick around and do not forage for themselves. Then the females go into estrus with those extra calories. Now you have more wildlife eating your handouts. This is a never-ending cycle that gets worse with time. You create moochers.

The more you do for your child, the less he/she will do for themselves. If you stop suddenly, they resent it. If you cannot stop, you resent it. Applaud every effort he/she makes to do things independently. You will both celebrate every milestone.

Independence is the goal, NOT dependence. Maybe you can do all your child’s laundry, chores and homework now. You will not be young and energetic forever. You will not be able to do everything for them eventually. Who then?

Do you buy them things to make them feel loved. When you finally retire, you will not be able to afford spoiling him/her with your consolatory gifts that you give to try to make up for the disability. They will want cars and houses instead of toys and candy.

You will get old and he/she will still expect you to take care of them. You will not be able to do this. You will be worn out and tired. He/she will be young, selfish and demanding, not caring and giving. We call this “spoiled.”

Stop yourself RIGHT NOW! TODAY. Break this poisonous pattern. You both will benefit in the long run. They need to be as strong as possible without you. You will not live forever. Do not make them needy, greedy and helpless.

Strong children make strong adults. Independent people make the world better. If dependence is necessary, then all must accept this. But do not be strong for him/her or your child will be deprived of developing his/her own strength.

I made this mistake. I am still struggling to right this wrong. I have stood down and watched Rose rise to the occasion. We are both better people and separately stronger. The tether was broken.

A child as strong as possible is the goal. A child as independent as possible is the goal.

Stand down. Watch what happens.

Mama Bear

We Both Go To College

Chapter 48 of book Seizure Mama and Rose by Flower Roberts(Amazon)

After Rose’s graduation from high school, she enrolled to take classes at the local community college. She started out with just one class called College Success. It had been a rocky summer. We had traveled across the country to the famous clinic in hopes of a more effective treatment. We had waited weeks for our “No-hope Diagnosis.” There were still some seizures and side effects. I had previously quit my teaching job at the middle school to take Rose to our favorite nearby hospital for another stay in the EMU. Rose and I both were starting over.
I had taught night classes at this college years before, so I applied to do that again. I had not taught at this level for over a decade. Ironically, I had quit my job teaching biology there when Rose’s epilepsy had started when she was four years old. Now I was back again, taxiing Rose to class and hanging out around campus in case she needed me.
Our first day of college was a horrible beginning to the semester. Rose was always a little behind schedule back then. It took extra effort to get her anywhere on time. We barely made it to her first class. I sat down on a bench outside the classroom to study the lesson I would use for my own first class. This is when I noticed that I was wearing my house shoes. Here I was at my new place of employment on the first day of class, walking around campus in my bright purple house shoes. So much for a professional first impression.
This first class for Rose was a struggle. She was on the new “good” drug from Germany, but also on a new “bad” drug that made her unreasonable and stubborn. The arguments we had during this terrible period were nonsensical and embarrassing for me. It was like she was going through the terrible-twos and terrible-teens at once.
Sometimes our conflicts occurred in public. I handled these as best I could, but many times I had to leave the scene. They were humiliating confrontations. We never knew when these strange tiffs were coming. Rose had become a bully and I was becoming a defensive witch.
After a particularly brutal confrontation in front of my boss and the dean at the college, I moved out of our house- first to my parents’ vacation home, and then to my son’s apartment. I honestly had no intention of ever living in the same house with Rose again. I was her taxi, cook, wallet, and maid, not her mother. All my enabling had reduced me to nothing except her useful possession. She had no respect for me. There were no limits to her demands.
During my weeks-long vacation from Rose, I was amazed at how easy it was to be by myself and go places alone. No struggles. No arguments. Just me deciding what I wanted to do and doing it. I felt the emotional draining stop and I started to heal and be strong and separate. I was still me under there!
During my hiatus, my husband took Rose to look at a small apartment near the college. He did not mention her moving out ahead of time. She freaked out because she thought we were throwing her out of the house. Rose does not like change. She considers her messy, crowded room her sanctuary. This trip to the rental property was traumatizing to her. I think she realized that she was about to divide our family, not just hurt me. It was the first time she ever considered the thought of leaving home. She was nineteen years old at the time.

Seizure Mama speaks to parents:

It is hard to keep appropriate boundaries when the person in need is your child. It is especially hard when your child has a disability. This humiliating at the college was my “Waterloo.” I had always run block for Rose, so that she had fewer hurdles to get over, but my handling her issues for her sent the message that she could not do it herself. Instead of appreciation, enabling caused anger towards me and herself.
This was unfair to her and to all the other folks she has relationships with. I have spent these last few years “standing down” and letting her get through her own struggles. She has become more independent. It has been a relief for us both.
Enabling is a hard habit to break, but you MUST do this. If your child can tie his/her own shoes, then he/she must be expected to tie his/her shoes everyday. It is your child’s responsibility. This precious “baby” of yours must be expected to do whatever he/she is capable of doing. Do not make him or her needlessly dependent on others. Nobody likes needy and greedy.
You are a separate individual. Keep appropriate boundaries. Set a realistic example. Get a team to help. This is your life, too.

The No-Hope Diagnosis

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%.

HEY PARENTS,

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.

Mama Flower

Waiting for Answers

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)

The Slow Motion Seizure

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.

That Miraculous Day

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

Rose Graduates High School

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

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