Category: epilepsy

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

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/

 

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