Category: epilepsy

Anything But Zero

I have high goals for my other blog, 50 views and 10 countries per day. That blog rarely misses the mark. That makes me happy.


For this blog, seizuremamaandrose, the goal is simple…


Anything but Zero.

That sounds like I have low hopes for
Seizure Mama and Rose, but the truth is that I have really high hopes. One view here is way more important than 50 about plants.


My hope that whoever needs us will find it.


That’s all. That is why we are here.That is why we have given away more books than we have sold. This is a mission.


My heart needs for someone, somewhere to be helped through their struggles by our stories. I want that person to know they are not alone. They may find an event in our past that rings true for them and gives them hope.


I only wish they could see Rose now. Driving and making her rounds around town. Eating in restaurants, ordering books from the local bookstore, visiting friends and stopping by our favorite gift shop to chat with two of our favorite women.

She has started going to a park to write. It has taken a lot of healing for her to start writing again. It is my sincere hope that someday Rose will take the helm of Seizure Mama and Rose. Then our readers can hear her voice.

I want the sequel to be, Rose on Her Own. That’s what we all want isn’t it moms? For our children to grow strong and as independent as possible.

But for now, I will keep our blog and book going out in the world to help others dealing with this invisible, interferring ailment, epilepsy, while hoping for

Anything but Zero.

Love and hope,

Mama

The Book of Another Mother

I finished Tara Heaton’s book late last night. I have the habit of highlighting and scribbling notes in the margins as I read. Almost every page of LIFE MINUTES Igniting Joy from the Fire of Heartache has been marked with hearts, tears, omg’s or YES in the margins.

Tara has laid it bare. My heart hurt with empathy as she described the tumultuous journey through various treatments for her daughter, Caroline. Other mothers will recognize the names of these drugs, treatments and hospitals. She has been another mother who has left no stone unturned looking for answers.

She also beautifully documents the effects this epilepsy treatment quest has had on her other two children, her marriage, her career and her own well-being. Epilepsy is a medical odyssey for the whole family, not just the patient. Tara shares how her family and friends have played important roles in the quest for Caroline’s cure.

I find this book an affirmation to my own story and struggles and also inspiration to my continued quest to find a cure for Rose’s seizures.

Tara is a fearless advocate in the continued search for the best care for our precious epilepsy patients. Her flame burns bright.

Bravo Mama Tara!

Seizure Mama FLOW

Another Writing Mother

A miraculous thing happened at the ‘ Wild Awakenings’  writing workshop with Cheryl Strayed which I attended this weekend in the mountains of North Carolina. I consider my getting myself to attend as a miracle, but that’s not it.

In a huge hall of over three hundred other writers, a lovely woman wearing flowing Beatles pants sat down in the seat beside me. She had on fingerless gloves with crocheted pink flowers on them. I instantly knew this was my kind of person.

She asked what writing projects I was involved in. I answered that I had written a book about my daughter’s epilepsy. She replied that she had just released a book about her daughter’s epilepsy. She asked how old my daughter is. I replied 32. She gasped and said her daughter is also 32.

(Pause here to do the math.)

This was a miracle. Of course we hugged. Of course I cried. We exchanged books.

The Universe sends us what we need just when we need it.

SEIZURE MAMAS

Seizure Mama and Cheryl Strayed

Passing the Battleaxe

It is past time for Rose to take ownership of her life. Her family has been fighting battles with her and for her.  She expects too much support and help at age 32.

Rose can drive again in April, if she remains seizure-free. She did apply for a job, I am told. There has been some stepping it up in terms of help around the house, while I have been gone. I have taken myself out of the enabling equation by taking myself elsewhere.

I wish this title was ‘Passing the Baton’ but it is so much more complicated than that. Our dynamics here evolved when the seizures and side effects were relentless. We were in survival mode. It was truly a battle to keep her alive. Keeping her safe from falls was almost impossible without an aura.

Rose needs a new arrangement with built-in checks and supports that do not always involve her dad and me. This will take technology, transportation, a safe environment and a support team.

I have been recommending and pushing for progress for a year now. Sometimes, we have to stand back and stand down before independence can take root.

I have to do this for me and for Rose. I am battle weary. I am older with many injuries of my own that need to heal.

She is stronger than she realizes. She can fight her own battles. My Mama Bear fire burns bright inside her. She senses injustices acutely. She is a champion of the weak.

Seizure Mama is passing the battleaxe to its rightful owner and walking away.

It is time.

Flower

The Memory is Back

I mentioned the movie, South Pacific, this morning. We have not watched it in well over a decade. The truth is I do not remember why I started singing “Bloody Mary’s chewing betel nuts.”
Rose pipes up from the breakfast table…”I wish the young guy had not died.”
I countered that’s how they make you care. The creators make you love a character and then kill him off.
Rose responded, “But he helped save a lot of people.”
I was sitting there stunned that she remembered this. As she turned to go back to her room she lifted both hands, smiled and made the ‘Happy Talk’ motions with her hands.


THIS IS HUGE.
I have not witnessed this kind of evidence of long term memory since the stroke in September of 2022.


I do not know whether it is a result of just reducing Xcopri and adding back Onfi and/or eating an IQbar with magnesium everyday and eating protein noodles for lunch.


I have felt that her brain needed something it was not getting as well as getting something it did not need.

This is what we have been waiting for!

Seizure Mama/ Flower Roberts

Hovering Over Rose

(THEN and NOW for Chapter 22:Safety During the Seizure Cycle)

There is no other way to describe our parenting style during those terrible months. It is hard to act relaxed when you are constantly on high alert, but we tried. We endured puzzled looks from strangers. Sometimes we got unsolicited advice. We learned to tolerate all this. It was part of the over-protective parent package. We were protecting Rose from injury, not public opinion.

I know this is a hard pill to swallow. Most folks mean well and are truly trying to help. Some advice is so ridiculous that taking it would be harmful. Our worst treatment suggestion came from a loaned book. It stated that we should hook up the patient to a car battery and shock him/her to kill the Ascaris lumbricoides (worm)larva that were clustering at the base of the brain and cutting off the oxygen supply.

Wow! Thanks!

You do what you have to do. This is your fragile child. You will have to live with the results of the drugs and injuries. You need to let the opinion of others fade into the periphery and stay focused on your child’s needs.

If the doctor suggests a helmet, let your child pick it out and decorate it. If you cannot safely leave home without your child strapped in a wheel chair, get one and decorate it for a parade. Embrace whatever it is you need to do to carry on, and do it shamelessly. (I once saw an advertisement for colostomy bags with matching bikinis. That’s how it’s done! )

Sometimes I wonder if I am helping anyone. I do not like giving advice, but I am telling you what I wish someone had told me twenty years ago.

FLOW

Drugs can be Poison

Then and Now for Chapter 20: Drug Changes Change Rose

This period of time will always come back vividly due to the fear I felt every minute of every day. “Things fell apart. Months were a blur.” this chapter says. We were panicked by Rose’s decline. All we had were strong seizures and horrible side effects. I did not want to take my eyes off of her, but I was cracking up inside. Something had to give.

I have had to ask myself some hard questions about this stretch of Rose’s epilepsy. Why did we go along for so long? I am trying to be honest and careful here because I know some of you may be going through similar experiences.

When do you bail water or bail out? I think we bailed water too long here. Why? Ignorance and insecurity. We did not know what to do to help Rose, so we did what the doctor told us. A few hand slaps from a doctor makes one hesitant to argue. I was trying to study drugs and other treatments that I could barely understand. I had to trust somebody else to know what to do. But the doctor did not see Rose lying on the couch all day, listless and pail. She did have to support her as she walked. She did not hear her voice flatten and her eyes flutter.

If you are this scared of the drugs or the doctor, bail out.

GET A SECOND OPINION.

Tell them Flower sent you.

I cringe when I remember this period. If we had continued on this path, I am not sure that the Rose we have today would even exist now.

Love,

Flower

Change Causes Change

Reposted Chapter 20: Drug Changes Change Rose

Things fell apart. Drug 4L had been added to drug 3S after the seizures during the holidays. At first drug 4L made Rose mean. Getting her schoolwork done was a battle. Either she would not or could not concentrate. Were these changes due to the new drug, the new homebound situation, or the seizures? Her ear infections continued, so antibiotics were frequently in the mix.
We kept records of all her drug dosages and combinations, along with seizure descriptions on a chart. We couldn’t keep all of it straight unless we wrote it down. The months were a blur of seizures, side effects and sickness. I read books about epilepsy and researched epilepsy drugs and treatments. It was all so confusing. How could we help our Rose if we did not understand this disorder and the effects of its medications? I felt helpless and hopeless. Rose was changing as her drugs changed.
Appointments with the neurologist became very frustrating. The partner of the practice had left, so our doctor was handling a double load of patients. We used to feel like there was a set plan for Rose’s treatment; now it seemed like one long experiment. The doses for drug 4L kept increasing and we saw nothing but side effects. Her seizures became longer and stronger. We must have missed the window of effectiveness for drug 4L. Finally it was dropped and drug 5Z was added to her doses of 3S. Experimenting with the wrong drugs and dosages went on for months. Every few days, Rose would have a long, strong seizure. She would spend a day or two recovering before another seizure knocked her back down. I did not leave her anymore. I was too scared.
Sometimes on the weekends when Rose’s dad was home, Rose’s brother would ride the trails through the woods around our house. I would go with him carrying my camera and a walkie talkie. If a seizure occurred, her dad could call me to come back. I would hike through the woods and allow myself to cry. This was the only time I would leave the house. I walked the paths in our woods relieved to be out of our sad house where the walls kept closing in.
I never let Rose see me cry. We did not want her to see us saddened or scared. We were losing her. Her essence was disappearing. She was a groggy, foggy, tired mess. The drugs were not helping anything. The seizures were wearing her down and the drugs were ruining the time in between them.

Seizure Mama speaks to parents:

I am ashamed to look at the records from these terrible months. Why did we not get a second opinion sooner? Why did we not demand to go to an EMU? The awful reason was that we thought going to the EMU was a big step toward surgery. I had read about the different surgeries that were used to stop seizures. I wanted to give every drug a full chance to work. When I look back at her charts of medication combinations now, I am horrified.
Drug changes were being made frequently and almost in a random fashion. I think the neurologist was on overload and was pushed to try things because of my constant calls and letters. She was seemingly experimenting with various possible remedies.
It took the terrible scare of Rose going toxic for us to decide that enough was enough and seek a second opinion from a different neurologist in a different city. That was a turning point for us. Don’t wait that long.

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