Category: fear

Story #2: Fevers and Seizures

Rose had many ear infections that were usually accompanied by fevers. Unfortunately, these fevers sometimes caused febrile(with fever)seizures. We were vigilant about taking her temperature anytime she was sick. If her temperature was elevated, we gave her a children’s liquid form of an NSAID(non-steroidal anti-inflammatory drugs). We tried diligently to prevent her fevers from getting high enough to supposedly cause a seizure. We referred to her problem as a “faulty thermostat”. No fevers, meant no seizures… we thought.
Over the next three years after her initial seizure in the pediatricians office, Rose had eleven more febrile seizures. These were always scary. It seemed as though we just couldn’t prevent them, even though we tried to intervene with over-the-counter medications. We began to suspect that there was more to these events than just fevers.
I began wondering if this condition had a source that was always present, not just something that showed up with fever and illness. Was there something in her brain causing these? Maybe a lesion, tumor or chemical imbalance? When would this end? All children get sick, but most don’t have seizures accompanying illnesses.
I began to feel that the cause was lurking somewhere in Rose, waiting until she was weakened. I suspected that this was no visitor that showed up with illnesses and fevers. This was a resident. I constantly watched for flushed skin and chin twitches.
I did some research. I read all about febrile seizures. No one mentioned the word epilepsy. It crossed my mind, but not my lips. Not my child. It was these ear infections. If we could get them under control, things would be fine. An Ear, Nose and Throat specialist, that’s what we needed. Get some tubes in those ears so that they could drain, the infections would clear, the fevers would stop. Voila’!

Seizure Mama speaks to parents:

Later on there were some suspect incidences that did not involve fevers. Rose referred to them as “tornadoes in her mouth”.  I did not know anything about partial seizures. I had never researched epilepsy before. I did not want it to be epilepsy, so I ignored some signs. That’s called denial. Would my being more proactive have made any difference? No one can know that. I did the best I could with what I knew at the time. When there were undeniable signs of something more, I jumped into action. For now the diagnosis was febrile seizures, nothing countered that. I am not one to borrow trouble.

Story #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 to 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. As the nurse put the thermometer in Rose’s ear she 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 patient room. Rose was still jerking as we gingerly placed her on the padded examination table. Then she was eerily still and ashen. She didn’t look the same. Had something changed in those few minutes? Was Rose still in there? I held my breath and waited for a movement or sound. Waiting for 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 clothes that were 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 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 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 may 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.

Dear Parents

Introduction for Watching Rose Rise:

I wish I could claim that this is a “How to” manual for raising a child with epilepsy.  It is not.  This is the story of raising our daughter, Rose. We made many mistakes.  Our family did the best that we could despite our own fears and ignorance. We were never trained as parents, much less as medical specialist. Our job was to raise Rose, not to cure her. We found the best doctors and tried many medications, but treatment is not a cure. We did what parents do. We flew by the seat of our pants with our hearts wide open and breaking.

I do not recommend you follow this twisted trail of breadcrumbs that I have left here for you to read.  I only hope that you recognize your own struggles among these stories and realize that you are not alone. Someone else has been where you are now, as a terrified parent, and survived to tell the tale.

Just remember you do not get to be the superhero in your child’s story.

Yours is a supporting role.

You child is the star.

When they fall down, you help them up.

Eventually, they will not need your help to get back up.

Your job is to get them strong enough to rise alone.

The getting back up is the important part.

When they are strong enough, you can stand back with pride.

This is where we are now…

Watching Rose Rise

 

 

Another Mother

Rose and I had a lot of help during these years of struggle. Rose’s dad kept working through it all while I quit teaching part-time at the local college, then closed down my garden art business, later left my middle school job and lastly kissed that community college good-by for a second time. Rose’s dad has been the steadfast supporter, while I have fluctuated between fearless caregiver and emotional wreck. My husband is still working after thirty-eight years to keep our insurance. Hang in there Honey!

Rose’s big brother missed having a care-free childhood because he had to be strong and serious. I still send him silly photos on his phone to make sure he laughs once in a while. He is like his daddy. He will carry the load and stand straight up doing it. He has been there for Rose over and over again. Playing the role of goofy protector to keep her safe and laughing. I hope he surrounds himself with fun and joy as a man.
Our whole family has traveled with us on this journey; two aunts, four grandparents, a beloved uncle B and two cousins. Coming to parties and throwing parties. Showing up wherever we were with food and gifts. Calling to check on Rose. Taking her shopping.  Playing games with her. Doing what families do.
Our church has been a blessing through it all. It is like our second home. We went there during the terrible times when we did not go anywhere else. Rose got to be around familiar folks. The other children knew about her seizures. These families supported us through the tough times. Our church friends brought in meals for our family and toys, games and coloring books for Rose. Three older gentlemen made it a point to call us every couple of weeks. “How is our girl?” they would ask. Ronnie is still around. Phillip and Blake are no longer living. Rose loved them dearly and took each one’s passing especially hard.
Rose has some friends that have stayed loyal through the years. Leigh Ann, Peter, Ingrid, Aly, Erick and Christina are still her support team. These kids are like family. We are so grateful to them for helping us raise Rose. These peers were especially important through the teen years when Rose’s parents were so ignorant.

All these people gave all kinds of support, but what I really needed was another mother. I needed a mother who had raised a child with epilepsy to tell me how the hell I was going to get us through this. I did not want that other mother to be going through her journey along with me. I needed a mentor. Someone who had lived through all the trials and tribulations and had acquired the skills to stay afloat. Someone with stupid stories and anecdotes. I just needed one other mother to reassure me that we could come out the other side of this terrible tunnel. I needed to see the light.
My forays on the Internet got me drug names and possible treatments. I did not understand most of what I read. I had no medical training. I wasn’t a chemist. I did not need all that jargon. What I really needed was another mother.
That is why started the blog, Seizure Mama and Rose. I was determined to be that other mother. So that some scared mama who was going through that tunnel in real-time could glimpse what life might be like at the other end.

When Rose calls home from the university,  I tell her where our views have been.  I say, “Another mother has found us.”

Hang on “Another Mother”, Rose and I are right here.

SEIZURE MAMA

The Jacksonian March

This is not the name of a military drill.

This term describes the progression of a focal seizure up the motor cortex of the brain.

The seizure slowly spreads along what I call the “motor strip.”

I do not need to look at a diagram to remember the order of its areas.

That is because Rose’s first big, thirty-minute seizure involved

a Jacksonian March.

I watched as the chin twitch turned into, blinking eyes.

Next,  her hands pivoted down at the wrist.

Then her little arms pulled in toward her chest.

Her torso began rhythmically writhing .

Her legs bent up toward her body.

She was in a tight knot.

Even her toes were curled up.

Then she started turning  blue, because she could not breathe.

The doctor on the phone instructed me to get Rose to a hospital, FAST.

I carried this knot of a girl to the car.

When I placed her in her seat, she vomited and went limp.

The Jacksonian March was over.

Rose was four years old at the time.

This was the dramatic beginning of our journey with epilepsy.

She is twenty-six now.

She is the strongest person I know.

I pity the fool that makes fun of a person having a seizure if Rose is around.

I just hope she lets them live!

Seizure Mama

https://www.epilepsy.com/release/2018/12/epilepsy-foundation-issues-statement-indiana-basketball-player-living-seizures?fbclid=IwAR38FYNbl6LRLxX19SBTZ10OzPg-HvO2y9SmfW_4emyd6nUnzac9wbSwU9c

Revelations

My sister and I rushed into the Emergency Room to find our parents. We located them in one of the cramped, curtained rooms. My parents’ young neighbor had awaited our arrival. We thanked her as she slipped out. My mom was in the bed, 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 for a few minutes before 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 there had been delays. 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 end her suffering. I peeked out of the curtain to see her stumbling to the restroom with a specimen cup.
That’s when I saw the policemen. There was a swarm of blue right outside my mama’s curtain. I knew we were in a big city, but so 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 circled the source of the sounds. It was a young man in ragged clothes with matted hair. One of the officers was talking calmly to this desperate person. He was almost cooing to him.  It was like one calming a scared wild animal. The other officers were young men and women in uniform. Their faces showed concern for the source of the scream. 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. There was only a curtain 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 encircled stranger who was at the end of his rope, broken and alone.
Those officers, they were heroes. They  were forming a barrier between this crazed young man and the rest of us. When you are looking for angels in this 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 blessed I was. I am a slow learner, but I eventually figure it out.

Two Down One Night

The day of Rose’s college graduation finally arrived. She was super excited. There were over four hundred graduates and she was leading the line. 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 that 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 paraded past. I knew hundreds of these students. 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, aunt, uncle, cousins, brother and her other set of grand parents. 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 lead 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 marching across 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 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 stopped by my house to pack a few things before heading to the hospital. I was rushing around my room tossing clothes in a bag when 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 to finish charging. 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. Carol called back minutes later to tell me that 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 most 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 and run back up the street to the college to be with Rose. Her dad got on the phone and told me to go on and head to the hospital to take care of my mama. My sister drove that hour to the hospital 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 NOW

This is the last story I will post on Seizure Mama.

There are two more. The blog will not get those.

Rose will have to write the sequel to this book herself.
This mama is done.
I began with Rose in a “Hot Diaper ” and ended it with her in a cap and gown.

What’s next is up to Rose. I can’t wait to see where she goes.

We’re tough, real tough!

Rose’s Mama

The Hard Parts

Since I am writing this for other mothers, I must be totally honest.

There are parts of Rose’s story that still make me weep.

To write this book, I have most of her medical records. Now that she is an adult, she must get some that are missing from our files.  There are some gaps that need to be filled in.

We have thousands of pages and hundreds of films from scans. We have calendars and charts and spread sheets. We were desperate to keep every shred of information in case it held a clue to her cure.

I refer to these records before I write a story. I do not put in all the details. It would be cumbersome to read.  I do not understand much of the terminology. It was a constant struggle to take in all the information.

Sometimes, when I read these pages in the records, it is like I am seeing it for the first time.  I guess I just could not process everything while all the trauma was going on. I read  from her last tests on Friday afternoon. I read them until I could not see through my tears. I had to walk away from the desk.  It was like all the light left the room.

I bet you know what that’s like.

Rose is so brave. She marches straight toward the future with unwavering courage. I must be brave too. Not for me, but for you, Another Mother is your name.

I have to see this through for you. So I will keep going. You may need us.

So I will return to 2002 and  2012. I will finish what we have started. It gives us purpose. I promised Rose that I would write down her stories to share them.  Her job now is to get on with her life. She is fearless, so I must be, too.

SEIZURE MAMA

The Same, but Different

Any medication change brought its own changes in Rose. Sometimes she got lethargic. Other times she got aggressive. Some medications caused headaches Some 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. You remember what kicked you while you were down. 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 had them, the medication choices get more and more limited. We had all ready tried the main anti-convulsants 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 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!” that she would probably respond ” No. My room won’t burn.”

I was with her almost all of 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 her disposition or get worse with some side-effect. I got my wish. Things did start to deteriorate, but we held the line because we knew we did not have many options left.

Right about this time our insurance changed. We could no longer go to the small pharmacy 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 “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 all ready.”

I put the new bottle in her medicine basket with all the other bottles. This drug was one that the pills could be cut in half. 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 afternoons.

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 before the refill. I just put two halves in the compartment instead of a whole.

Things began to change as soon as I started filling in 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 lost her spunk.  The changes in Rose were gradual, but noticeable. I was pondering on 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. Otherwise, her dad and I would have been clueless. I sat down at the kitchen table to refill the 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 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. The old bottle name ended in “-al” the new bottle 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.

Generics drugs are not the exact same. We had been here before. Not only can they 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 imposter generic could have caused serious injury to my precious patient.

SEIZURE MAMA