Tag: seizures

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.

Then and Now: Second Drug Down

Sometimes wisdom comes in unwanted ways. The learning curve gets painfully steep during medical crises. There is trauma mixed with desperate love for a heart-breaking combination.

I am adding some things here that I have learned while my father was in the hospital with cancer. These were hard lessons. These situations may arise with your family as you navigate serious medical decisions. Let’s hope you never get to this point.

The first difficult situation is when all decision makers do not agree on the next course of action. Different personalities handle emergencies differently. This can cause friction within your frazzled family. A hospital social worker may need to get involved to get a clear idea of what the patient wants and what the doctors advise. Sometimes it is only a matter of miscommunication. Sometimes one person’s expectations are unrealistic. Other times fear blurs logic and makes a loved one afraid to have any treatment tried despite the necessity.

The second difficult situation involves Covid-19 protocol. Some hospitals allow only one family member to be with the patient. Who will that person be in your family? We tag-teamed and texted constantly to keep everyone in the loop. It was still lonely and stressful. Other hospitals do not allow any visitors under some conditions. This is horrible for everyone, especially the patient even though it may be necessary. This pandemic has effected the lives of everyone, even those who have not had Covid and are fully vaccinated. Hopefully this will end in the coming year or two.

My family left a notebook in the hospital room so that everyone could record what happened on their watch and left notes of love and encouragement in it for the other members of the team. Near the end of daddy’s life, we wrote down his every word and movement so that the information would be there to share with the entire family.

Maybe some “If- Then” discussions and role playing ahead of time will help prepare your family before you are trapped with these hospital protocol dilemmas. It is always better to be proactive than reactive.

Lastly, I would like to add that PTSD may be in your future. When it finally makes itself known, get some support and/or medication. The whole family is affected by the serious illness of a loved one. Self-care of the care-giver is very important. That’s YOU Other Mother. Your family needs you healthy and whole to play your role.

Seasoned Mama

Reposted Chapter 9: Second Drug Down

Rose had many sore throats and ear infections from the time she was a baby. To help with these issues, she had a tonsillectomy and a tube placed in her left eardrum for drainage in December. She was five years old and in her second year of prekindergarten preschool. The surgery went as planned. We went home feeling like we were eliminating several health issues. We were relieved to have these two surgeries behind us.
Around 4:00 AM the night after the outpatient surgery Rose started vomiting. We hoped this was due to the post-surgery pain medications. Her vomit consisted of applesauce and white flecks. We wondered if the white flecks were pieces of drug 2D. The vomiting continued. We tried to intervene with a gel applied to her arm. The anti-nausea gel was our safety net for nausea. We kept syringes of it in the refrigerator.
The first seizure occurred about 10:00 AM. The first one was short. The one that followed was a bit longer. Then there were two episodes of stiffening of her arms. Any series of seizures is scary, but Rose’s body was under the stress of post-surgery and the after-effects of anesthesia. We knew we needed help.
We went to the Emergency Room at our local hospital. We made it clear that Rose’s neurologist must be contacted before any drugs were given in her IV. A large dose of drug 2D was administered without consulting Dr. T. When a blood sample was drawn later, the levels of drug 2D was really high, too high. No other drugs could be given.
Rose had four more seizures while at this high level of 2D. She was seizing while unconscious. Her emergency, sub-lingual pills could not be used due to her high levels of 2D. We watched helplessly, realizing drug 2D was not effective in preventing Rose’s seizures.
Rose was moved to a room on the pediatrics floor. I was comforted that her bed was surrounded by caring and attentive professionals. I was not comforted that they could barely hide their panic. I watched as they lovingly tried to help my unconscious little girl as if she were their own.
They were hovering around Rose’s bed, totally focused on her every move when a nursing assistant rolled some scales in to the room to attempt to get Rose’s weight. The group heard the squeaky wheels of the scales enter her room. They all turned from the bed to see the scales. In unison they belted out, “Not now.” It was such a ridiculous event that I laughed out loud.

Seizure Mama speaks to parents.

When you take your child to a hospital, you are no longer in charge. They have their rules and protocols that they must follow. You must be assertive, yet patient. I am not good at either of these things, but I have had to practice. You and your child will have to live with treatments received in the Emergency Room long after the doctors and nurses have moved on to the next emergency. Keep all your medication information and doctor contacts with you at all times. These medical professionals need all the information they can get, fast, so they can make the right decisions quickly.

Then and Now will HOPEFULLY appear on Wednesday July, 14, 2021

We are struggling here. We are doing our best. That’s all anyone can do…including you Other Mother. My dad’s memorial service is Saturday. It has been a year since he left us. I still cannot use the d-word. I am still in a sling. My garden is full of weeds. My son moved into his first house. Not all struggles are bad.

Please know my heart is with you even when I take breaks from our blog.

Flower/Seizure Mama

Reposted Chapter 7: The First Neurologist

Rose’s first visit to a neurologist was months after her first officially epileptic seizure. During the previous months she had tried one drug that failed and was on a second that was prescribed by her pediatrician. Many tests had been run including an electroencephalogram(EEG). She had experienced a second big seizure. We were anxious to learn everything we could from this appointment.
Dr. T’s diagnosis was complex partial epilepsy. This meant that Rose’s seizures started in a certain place in her brain and then generalized to a full seizure know as grand mal or tonic clonic. This made sense to us because her febrile seizures started with chin twitching. Rose referred to these as a “tornado in her mouth.” She could not speak during these episodes, but she could point to her mouth. That little aura served as a warning that was so helpful in those early days. The “tornado” aura soon disappeared, so that we were all surprised by Rose falling to the floor.
Since her seizures were lengthy, Dr.T advised us to get CPR training. She recommended that we call 911 for any seizure lasting more than five minutes. We knew that longer seizures meant danger to her brain and her life. Her dad, brother and I vigilantly watched her, but since Rose was a very active little girl, this was not easy. Our family started tag-teaming “Rose watch” duty. She always stayed within earshot of the person responsible for her.We made sure someone was always nearby and alert.
The neurologist evaluated Rose physically and mentally with simple tests. She was extremely bright and was evaluated as entry-level first grade, although she was just entering her last year of preschool. Dr.T instructed us to watch for developmental backsliding and side effects involving Rose’s gums. After our experience with her first drug 1T we knew that such changes were plausible. We hoped that this second drug would do its job without the side effects.
The plan was to stay on drug 2D for three years and then slowly wean down and off if no more seizures occurred. We were glad to hear that these childhood seizures might eventually diminish. Our new goal was three seizure-free years.
We jumped through all the seizure-prevention hoops. Rose took all medications on time. She was encouraged to take afternoon naps even if it was just quiet time in her bed. We diligently watched for fevers and treated each immediately with a red or pink over-the-counter non-steroidal anti-inflammatory drug(NSAID).

Seizure Mama speaks to parents:

The term SUDEP(Sudden Unexplained Death from Epilepsy) was not coined at this point. We knew that during Rose’s first long seizure her heart may have stopped. We knew that the longer and stronger the seizures were, the more dangerous and life-threatening they were. This was always in the back of our minds. It is still in the back of our minds. Rose is twenty-six years old and away at college, but that fear still remains here. You must go on with your life despite this threat. Uncertainty is present in every life; you just got yourself a big ol’ dose of it to hide somewhere.

THEN and NOW will be posted on Wednesday, June 16, 2021.

Mama has a lot to say about this. Whew!

Be Brave: Then and Now

Epilepsy requires bravery from everyone involved.

Mama had to fight through a whole lot of fear to get to the brave side of the continuum. The fear is always there. The bravery has to be sought for and fought for. This was the hard part for me, but not for Rose.

Bravery is in her blood. Sometimes she reminds me of Lieutenant Dan in the movie Forrest Gump. She is perched atop the mast of her boat yelling at the storms and shaking her fist. That is her super power.

Where did this come from? Experience. Rose knows her storms are inevitable, so instead of going below to cower, she climbs her mast and dares it to destroy her. No where is safe. Might as well give epilepsy the finger.

Her bravery has been a surprise since she was small. Doctors expected to drug her for certain procedures. “No need.” I told them. She sat quietly watching or lay in the tunnels with her eyes on me as machines examined her insides. Her bravery was a blessing. It forced me be brave or at least pretend to be brave.

Reposting of Chapter 7: The First Neurologist will be on Saturday, June 12.

Hot Diaper: Then and Now

I have replayed this memory many times, because it was the beginning. Would my handling it differently have lead us down a different path?

In my mind, I have watched my young-mother-self over and over. Young me panicking and running out of the house with hot little Rose, knowing only that I needed help. A mother and baby alone at home among the woods, down a long driveway, inside a locked gate.

What I see now is insecurity as a mother, fear as a care-giver and and a lack of confidence in handling a new problem. This is the surprise for me. I was a confident biology student and science teacher. Why was motherhood a game-changer?

My answer is that I am a person who has to be over-prepared to feel confident. I had years of training in biology and then additional years as a teacher. I felt prepared, so I was at ease in those roles. I did read books on parenting and talk to other mothers, but I never relaxed when it came to the childcare issues. I always second guessed my decisions, thus the “Blame Game.” Maybe I will be a confident grandmother after all this experience. Ha!

Now that I have had decades to reflect on my mothering skills or lack of skills, I have come to the conclusion that I did my best with the best intentions. No mom could love her children more than I love my two. Even though I could have handled this first seizure in many different ways, I always come back to the same conclusion…

that I am glad this event occurred in the pediatrician’s office where I had a nurse’s and doctor’s assistance for this first of many traumatic seizures.

So… Hi, Ho! Let it go!

Seizure Mama

Reposted Chapter 1: Hot Diaper

1 Hot Diaper

The warning came in the form of a hot diaper. I was sitting at the kitchen table with Rose on my lap. I felt extreme heat radiating across my thighs. I thought I had spilled a cup of hot coffee into my chair, but there was no coffee near me, only squirming and fussy Rose.
When I figured out that the heat was coming from her diaper, I panicked. How could her pee be that hot? All I could think of was getting her to her pediatrician. I knew the fever had to be really high for her urine too be this hot.
I grabbed Rose’s diaper bag along with my purse and headed out the door. I drove straight to the doctor’s office even though I knew it was their lunchtime. I pulled our van into the parking lot facing the door of the office. I paced back and forth outside the open van door while Rose sat quietly in her car seat. The nurse appeared to unlock the door. I removed Rose from her seat and hurried toward the nurse. I quickly explained why we were there without an appointment.
It was a relief to be ushered into the office and down the hallway toward the examination rooms. We stopped in the alcove where vitals were taken before going into a room. As the nurse put the thermometer in Rose’s ear, Rose stiffened. Her head tilted back and her eyes rolled up in her head. She was twitching and twisting so strongly that I could barely keep her in my arms. I screamed the doctor’s name. “She’s having a seizure!” I heard myself yell.
The doctor appeared beside us and cradled Rose’s head as we moved as a group into the nearest room. Rose was still jerking as we gingerly placed her on the padded examination table. Then she became eerily still and ashen. Was Rose still in there? I held my breath and waited for a movement or sound, some sign that this was over and Rose was back.
The doctor stayed with us, silently administering acetaminophen rectally. He sponged down Rose’s arms and legs with cloths wet with tepid water. Rose began to squirm. I remember taking a deep breath. She stirred some more, then looked around and sat up.
The doctor left to see other patients while I sat in the chair holding Rose. I was stunned at what had just taken place. Rose eventually got down on the floor to play with the toys on the rug as if nothing had happened. I couldn’t take my eyes off of her.
I had never seen a seizure in person before. I didn’t know anything about childhood seizures. Mama had some serious learning to do. This was not in all those parenting books, or maybe I had skipped those parts.

Seizure Mama speaks to parents:

After the shock wore off, I played the terrible parent game called “SECOND GUESSING YOURSELF.” If you have never played a form of this game, go on to the next story. The rest of you, here we go.

This form of the game is called “What if I had..?” It involves a kind of scientific twist like forming an if/then hypothesis and guessing the various outcomes. In the game you get to be the cause of every calamity. It’s a great game to play at night, in the dark, when you should be getting some much-needed rest.

I will demonstrate.

  1. IF I had changed Rose’s diaper and given her a cool drink instead of rushing to the doctor’s office, THEN she might have cooled off and never had that seizure.
  2. IF I had changed Rose’s diaper and clothes to a cooler outfit, THEN…
  3. IF I had given Rose a dose of an NSAID(non-steroidal anti-inflammatory)drug and a cool drink, THEN…

The possibilities of these variations are endless. You can lie awake and play all night if you wish.

What is the point of this game? Blame of course. You are in charge of your world, so this seizure must be your fault! I know, that sounds crazy right? Then quit thinking that way about yourself. Bad things happen. Maybe things could have been done differently. Maybe there would have been a different outcome. But you don’t know that. So when you catch yourself playing this terrible game, pat your tired self on the back and roll over and get some sleep.

Hot Diaper: THEN and NOW will be posted on Wednesday, May 5

Dear Parents: Then and Now

I wrote the letter to parents last. I wanted any parent who picked up this book to immediately sense empathy. I wanted them to know that we as parents recorded our experiences honestly and even ignorantly. We did not have all the answers. Nobody did.

I wanted to send a message of hope to anyone desperate and scared enough to read a book with the words seizure and epilepsy on the front cover. I hoped our stories to be like a remote friend that had been where the reader was, having conversations about our common experiences.

This is not pleasure reading, it is desperate, panicked reading. I remember when I started looking for anything that might help us. We were grasping for any straws that might lead to a better treatment. No drugs had worked. We had many side effects, but no progress.

I also wanted to let the parents know that a cure may not be in the cards. This was a giant pill for us to swallow. We kept searching for a magic drug only to discover there were bad drugs and worse drugs and possibly no drug that would control Rose’s seizures. Our search for an effective combination took twenty years.

We were fortunate to find the right treatment only because we never stopped searching and we had a neurologist who refused to give up on Rose. If you have not found the right neurologist, keep searching. Giving up gets you nowhere.

This may take over your life for a while. Save a tiny part separate. For me, it was my garden. It was always waiting for me to shed my role as Seizure Mama and return to being the Flower. My garden has saved my soul and sanity over and over again when everything else fell apart.

Get yourself a little life raft to hold on to and keep you busy during the storms. A purposeful hobby that your troubled mind can escape to., to take your thoughts somewhere else besides epilepsy. I have sewn hundred of masks through the pandemic to curb my fears. I could not stop the virus, but I could help protect people I knew from getting it.

I want to highlight that your role as a parent is a supporting role. You do props and costumes and stay behind the curtain. You do not have epilepsy, your child does. Make them face it. Make them handle it. Make them own it.

They will need every scrap of strength and perseverance to get through this life with epilepsy. They must practice being tenacious and tough. They must develop their superpower of going it alone and fighting their own battles.

Getting back up is the tough part, but that is when the magic happens.

Seizure Mama

The Missing Stories

The folks who know us best will notice omissions in our book.

There are missing stories.

I see no point in sharing them with our fragile and frazzled audience.

Some are painful while others are pointless.

There are stories of folks doing the wrong thing or nothing.

Why should I shame people for trying to do what they think they can do

or not trying to do what they know they cannot do.

There is so much forgiveness in my heart that I even have some left over for myself.

I am not a doctor, nurse or pharmacist. I am only a mother.

My job was to be there and care.

That’s what I did.

So friends, if you wonder why those events that you witnesssed  have been omitted from our memoir, keep in mind…

the point of our book is to help not to harm.

My ‘Other Mothers’ need stories they can learn from.

We want to stand on the edge of the crazy cliff with them,

not shove them over it.

That’s why we are here.  To stand together.

Seizure Mama and Rose

 

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