Seized on an Island: Then and Now

The good part of this story was that Rose had an aura. She knew something was coming, so she went inside and lay on the couch. Rose had auras during what we call “Phase One” of her epilepsy. She could point to her mouth to let us know a seizure was coming. We did not know how lucky we were then.

The period we call “Phase Two” had no auras. Rose was thrown to the ground with great force and no warning. Her arms were stiff so that her falls were not broken. Many injuries occurred due to the sudden seizure onset and gravity.

We usually raised a dosage of a drug after each seizure until the levels got high enough to know the drug would not work or, even worse, Rose went toxic on that drug. This happened several times. It was just as scary as seizures. We felt we were poisoning her while trying to save her.

This is why it is so important to write down every change in drugs and every change in your child. At some point, you may be too distressed to recall important information. I spent many days in a panicked fog. I could trust my notes but not my memory.

If you can identify aura symptoms and watch for them, you can prevent injuries from falling. Rose eventually described hers as a “tornado in her mouth.”

I know this is a lot of things to remember but I want to be thorough. I am trying to cover details that I did not include in our book.

Reposted Chapter 5: Seized on an Island

Our family had the tradition of staying on the same two beautiful islands during vacation each summer. These two destinations were adjoined by a bridge. We either rented a house on one island or a first-floor condo on the other. Both locations were on the beach. My parents could watch the ocean from the porches.
This particular year we stayed in the usual condo. There was an adjacent lawn with plenty of play-space off the patio and a nearby pool. It was the perfect location to easily keep track of two young children.
We were in the middle of a family ballgame on the lawn when Rose suddenly stopped playing and walked determinedly toward the condo.She stepped inside and immediately laid down on the couch in the living room. The couch was under an air conditioning vent. Her chin began to quiver and twitch as her face darkened. Her torso was hot, but her limbs were chilled. This seizure was about ten minutes long. We wondered what conditions may have brought this on. Was it not taking a nap? Getting too hot then too cold? Maybe the dosage of drug 2D was too low? This was the constant guessing game we played after each seizure. Why now? What caused it? What should we do differently?
When we returned home a blood level of drug 2D was taken. Rose’s dosage was increased.

Seizure Mama speaks to parents:

What caused this seizure? Epilepsy is the obvious answer. We seemed to ignore the elephant in the room over and over. It amazes me how we kept questioning the cause of each seizure like it had a new source. Yes, there were triggers that promoted the onset. We suspected that rapid temperature changes were a trigger many times.
You cannot keep your child in a bubble. Get out of the house. We spent a lot of time on the floor in public places. Me sitting beside my unconscious daughter and wishing we both could become invisible. Wishing we were someplace where scared and puzzled folks couldn’t stare at us.
So how would we prevent this? Stay home waiting for the next seizure. Avoiding any stimuli that might be a trigger. Is this an appropriate life for a little girl? Her parents? Her brother? Hiding and waiting?
The seizures will come whether you are hiding at home or enjoying an outing. Pack a bag of seizure supplies. Put your child in a cute helmet if necessary. Go out and have a life between these damn things.

THEN and NOW will be posted on Wednesday June 2, 2021

First Drug Down: Then and Now

Finding the right medication or combination of medications takes a lot of experimentation. We experimented for over twenty years. The drug that works for Rose had not been invented yet when we started.

You must be your child’s data collector. The doctor’s may keep records of the drug dosages, but you see the effects of those drugs. This is too important to leave to memory alone. Keep good records of mood changes, appetite changes, sleep issues and learning issues, as well as side effects and seizures.

This first chart is titration instructions given by her neurologist. This was helpful in filling Rose’s pill organizer. I could mark each day off as I filled the boxes.

This second photo is a chart we made of all the dosages tried and the results of each combination. As you can see, there were many changes. The side effects and seizures continued no matter the levels. This chart helped convince the doctor that this was not the drug for Rose. Keeping thorough records will prevent retrying combinations, especially if you switch neurologists at some point.

The last chart is a ‘Year on a Page’ that has all medical events for that time period. One of these is at the front of each year’s section in a series of notebooks we have on Rose’s treatments. I can glance at this page and then look through that section to locate specific events as needed.

PLEASE keep all your records together. You can sort them when the struggles diminish, but at least they will all be where you can find them when you need them. We kept everything in a cluttered file drawer. It is still a mess, but everything is in there…somewhere.

I am so glad we did this. I firmly believe our records helped get Rose to the right drugs. Only you can see the whole picture; medication dosages, side effects and seizures. Keep track of it all. It will make a difference.

Seized on an Island will be posted on Saturday, May 29, 2021

The Big One: Then and Now

Events occur in life that divide time into before and after. This was one of those.

Before this seizure, there was worry. After this seizure, there was fear. Real fear. Strong fear. The kind of fear that haunts your thoughts and jerks you awake.

My son and I saw the life leaving Rose. The term SUDEP had not been coined yet. Death by seizure was not widely talked about then. Folks still believed in tongue swallowing.

We know what we saw. I have been told that my panicked beating on the back may have served as haphazard CPR. I was aware of nothing but Rose in those long minutes.

I know I am sharing a nightmare with parents who have had their own, so I must be honest. The level of concern in our lives was raised that evening and has never returned to the previous level. We fight the fear every day. Especially me.

Yesterday, I drove Rose to run errands. My current PTSD and pandemic anxiety kept me in my car. I watch the world from a safe distance right now. Rose took longer than expected in both places. My anxiety level rose higher and higher, but I made myself stay in the car. If I went into the store, she would know that my fear for her was stronger than my fear for me. Rose would have been furious.

After this long, first non-febrile seizure we got rescue drugs. Once your child has had a status event, you need to request one of these. First it was a pill that dissolved in her cheek. Later it was a syringe of Diastat. This syringe is expensive and must not get too hot or too cold. I carried it in my big purse for almost twenty years. The drugs saved Rose at least a dozen times.

The Big One occurred in May 1997 and I am still unpacking its effects on our family. This caused a change in our dynamics. We still “circle our wagons” around Rose in times of trouble. We have not been able to protect her from all of life’s hardships, but we can be there for support.

There’s a fine line between being cautious and over-protective. We have crossed it many times. Do not stay on the “helicopter parent” side of that line all the time. Your child will end up weak and co-dependent. This epilepsy parenting is a marathon, not a sprint. You should be running the race with your child, not carrying them. I mean this. I know it is hard to do. You need to fight your fear, so your fragile child can get strong.

Sincerely,

Seizure Mama/Flower Roberts

Stop The Music

When Rose was in eighth grade band, the middle school band was invited to join the high school band to play during a football game. Rose sat with all the other trumpet players in the band section of the stadium.
Rose’s father and I sat in the adjacent section where we could keep an eye on her. We were concerned because Rose hated loud noise. We had instructed her to take out her tiny hearing aid while the band played. This hearing aid was red and the size of a kidney bean. It cost thousands of dollars and was not covered by insurance.
At some point during the first half, we noticed a disturbance where Rose was sitting. She was having a seizure. I rushed down to her side. The band director gave the other band members the okay to go take a break. This made it easier for the EMTs to get to us. Rose stayed unconscious for quite some time after the seizure. Her dad went to get the van and drive it up to the back of the stands.
It was about then that I noticed that Rose’s hearing aid was not in her ear. I searched around her. There was no little red bean. I went through her pockets. No bean. The EMTs joined in the search. We made quite a spectacle. Unconscious Rose, her mama, and a bunch of men in uniform scouring the empty stands.
The band members returned from their break. The band leader asked if I minded if they played some music. The music resumed. Rose aroused. A group of men helped haul Rose up the stadium steps to the van. As I followed them up the steps, a woman tapped me on the shoulder and asked “What were ya’ll lookin’ for down there?” She was curious about the lost item, not the unconscious girl. I guess asking about Rose would have been rude.
When we got Rose safely into the backseat of the van, I informed her dad that her tiny hearing aid was missing. I searched her pockets once more. Tucked down in the corner of her jacket pocket was that tiny expensive bean. I was so relieved and happy.
As we drove away from the school, Rose’s dad turned to me and asked, “Other than that, Mrs. Lincoln, how was the play?”

Seizure Mama speaks to parents:

It may be futile to try to keep your child’s seizures a secret. Rose’s condition was known to everyone at church, at school, and out in the community. We never tried to hide her epilepsy. There was no point in it. It went with us wherever we went, whether we liked it or not.

Your Present Our Past

I awoke thinking of you. You are on my mind.

My struggling mothers keep reminding me of our past.

You are where we were, that hard place, that dark tunnel.

Preparing for hospitals and tests. Trying new drugs.

Hoping with all your heart that this will stop the seizures.

You may be in different states and across an ocean, but we are right there.

Your messages take my breath and make me cry.

I feel your pain and know your angst.

I wish I could help. I have no advice. All journeys are unique.

Just know there is Another Mother who gets it.

Your present is our past.

My sincere hope is that all our futures are seizure free and worry free.

Seizure Mama/Flower Roberts

 

 

When IT Comes Back

I was reminded by one of my other mothers how I felt

when IT came back.

A seizure happens after a long seizure-free spell.

You are thinking that IT has finally left her alone.

It throws her down while you are not there.

She is injured, you are shaken.

At some point we have accepted that IT will be back.

We will not let it steal the time in between.

We will do what we want and be who we want

until IT returns.

Getting back up is the most important part.

IT will NOT keep her down.

Flower

Attached is the post I wrote when Rose had her first seizure while away at the university. I was sad and angry and scared…

https://seizuremamaandrose.org/2018/11/12/battle-ground/

 

Follow-up to last post…Revelations

I did not want to leave you hanging with the term “Charlie Foxtrot.”

Story 52: Revelations

My sister and I rushed into the Emergency Room to find our parents. We located them in one of the cramped curtained cubicles. My parents’ young neighbor had awaited our arrival. We thanked her as she slipped out. My mom was in the bed, and my dad was in the only chair. We did not share the fact that Rose’s graduation was followed by a seizure in the parking lot. We were all focused on what the doctor was saying about Mama when the ruckus started on the outside of the curtain.
The first sounds were from a woman who was clearly miserable. She was loudly complaining about getting no help for her problems while a female doctor was calmly explaining why help had been delayed. This conversation grew louder until the patient was screaming about pain and needing to pee. I sent up a prayer for this poor soul. Apparently her physician had not authorized the medications needed to calm her suffering. I peeked out of the curtain to see her stumbling to the restroom carrying a specimen cup.
That’s when I saw the policemen, a swarm of blue right outside my mama’s curtain. I knew we were in a big city, but did we need this much security? As I was pondering my question, I heard the saddest sound I have ever heard. It was a long, soulful howl from a person around the corner and out of my view. The hair on the back of my neck stood up. My heart felt heavy in my chest. What was wrong with this person? Then there was a scream and a crash. The blue swarm encircled the source of the sounds.It was a young man in ragged clothes with matted hair. One of the officers was talking calmly to him, almost cooing to him like one calming a scared, wild animal. The other officers’ faces showed concern for the desperate man. They were letting him release his anguish while forming a barrier between him and the rest of the people in the Emergency Room. I stood behind my daddy’s chair with my arms wrapped around him. Only a curtain stood between us and this sad situation. I was fervently praying with tears rolling down my face. I was not afraid. I was not praying for my mama. I was not praying for my Rose. I was praying for this stranger who was at the end of his rope, broken and alone.
Those officers were heroes with heart. They formed a barrier between us and this chaos with compassion. When you are looking for angels in the world, you may not see their halos and wings. Instead, they may be wearing badges and uniforms.
So Seizure Mama’s pity party was abruptly ended by a look at real suffering. Once again, I was shown how lucky I was. I am a slow learner, but I eventually figure it out.

Seizure Mama speaks to parents:

A complete stranger crashed one of my pity parties again. It had happened before in our favorite hospital as I was riding down the elevator with a mother who was taking her child to hospice, while I got to take Rose home. It has happened over and over again, but I keep forgetting these life lessons. That we are blessed with family and friends, insurance, and health care. The biggest blessing of all is that Rose has developed fierceness and strength. She will endure. This I know.

 

Wonderful Day: Terrible Night

This happened three years ago this week. Unfortunately, every bit is true.

Rose says it was the beginning of bad times for our family, but I know better. There were many unfortunate incidences before this. We just shielded our Rose from the trauma. This was actually when I began to realize I was not in charge. That has been a great comfort.

This story is near the end of our book. I consider the chapters that follow to be the best I have written. I guess I had to get really low for everything to come together in a Revelation. (Next story)

Story 51:  Two Down One Night

The day of college graduation finally arrived. Rose was super excited. She led the procession of over four hundred graduates. She looked glowing in her cap and gown with gold tassels and sash. She had worked hard for this day for six years. She had taken classes at the community college part-time and worked at a restaurant just down the street. This ceremony was a victory for all of us.
We arrived early so we could save the entire front row for family and friends. I was there with my camera to get photos of Rose and her fellow students as they strolled past. I knew hundreds of these students from either teaching at the middle school or at the college. It was like a reunion for me. What a wonderful night for our family. My parents could not attend due to mobility issues, but my sister was there, along with Rose’s dad, his sister and her husband, Rose’s- two cousins, and her brother. Rose’s other set of grandparents made it to the ceremony. It was a big event for the whole family, one we thought we may never witness. But here we were watching our Rose, smiling brightly as she led the line of graduates to their seats. She looked so happy and beautiful.
The ceremony was really long, but I enjoyed watching many of my former students parading across the stage. I felt like I was graduating, too. In a way I was. I would no longer be driving here every day and spending hours in the library, the science building, and the parking lots. Our time here was officially ending. Rose had a plan of what to do next, but I did not.
The ceremony ended. There were more photos and many hugs. As we were all parting ways, my sister’s phone rang. Our parents’ neighbor called to tell us that our mother had fallen down some steps backwards. She was being transported by ambulance to a hospital. The neighbor was driving my dad to the Emergency Room. The hospital they were going to was over an hour’s drive from where we were. We decided not to share the news with Rose. We wanted her to have this special night without the worry.
My sister and I raced to her car. We drove to my house to pack a few things before heading to the hospital. As I was rushing around my room throwing clothes in a bag, my cell phone rang. The man on the line stated that he was with the Emergency Medical Services. He told me my daughter had fallen and gotten injured. “No,” I said. “My mother has fallen. We are on our way to the hospital now.” “No ma’am,” he replied. “Your daughter has had a seizure and gotten hurt.” I collapsed on the bed screaming. My sister rushed into the room. I told the man to call my husband’s phone. I gave him the number. I hung up my phone only to hear another one start ringing in the other room. My husband had left his cell phone at home on the charger. My phone rang again. It was Rose’s friend Carol trying to find anyone in Rose’s family. I gave her Rose’s brother’s number. She called back minutes later to tell me Rose was fine now. I was hysterical. Lightning might as well have struck me. God PLEASE, I am not this strong! Two people I loved needed me and I was apart from them both. There was nothing that I could do. Helpless and hysterical! The combo from hell!
My son called the house phone soon after. He and his dad had run back up the street to the college to be with Rose. Her dad got on the phone and told me to head on to the hospital to take care of my mama. My sister drove that hour as I rode in silence, wondering why life can’t just come at you in single file instead of a damn Charlie Foxtrot.

Seizure Mama speaks to parents:

Yes, I was mad. I felt like God had pushed my mama down those steps while I was busy at Rose’s graduation. Then he lured me into a car with my sister and threw Rose down in the parking lot the minute my back was turned. My status as superhero had been sabotaged!

I was about to get another lesson about my not being in charge. I don’t know where I got the idea that I was a super-hero, but that role kept getting snatched away from me. Instead I would get stuck being a helpless observer, on the sidelines watching life go on with no help from me. My mama had fallen down. I wasn’t there to save her. My Rose had just had a seizure. I wasn’t there to help her either. How dare God take the wheel of my car? Who did he think he was dealing with?

Does this sound like the rant of a grown woman? How about a crazy woman? Let the anger out. Then take a deep breath and do what’s within your power. No superpowers available, just you doing your best for your child.

 

 

Handling the Hyper-emotional Events

Whenever something bad happens, we dread how Rose will respond.

We wonder whether she will explode or implode.

There is no moderate middle ground emotionally.

Rose has to be made aware of sad events slowly and gently.

It’s like we must postpone our own sorrow and grief to navigate hers.

I am not sure why this is.

I know hyper-emotional reactions is part of TLE(temporal lobe epilepsy), but we never found her seizure source.

Is it her medications? The proneness toward depression? The smallness of her world making everything bigger?

I do not know the cause.

I only know that a big wave is coming.

I hope I can save my Rose and myself.

Mercy!

Flower