Story #13: Rose Knows

We finally made it home from the hospital that Friday evening. Rose’s dad and grandfather headed back down the interstate in our truck to retrieve all my garden art from the booth of the show we had hurriedly abandoned that morning. Rose had been given a loaded dose of drug 3S in an IV. She slept on the way home. My parents came and stayed with me, my son and Rose so that we would not be alone after such a traumatic and exhausting day.
Rose slept for the first several hours. When she woke up and saw that it was dark, she realized that she was missing her friend’s birthday party and sleepover. She had been really looking forward to the event, even though we had warned her she could not spend the whole night. She cried about not being able to go to her friend’s house. I calmed her down and she went back to sleep. She slept in bed with me that night so I could keep an eye on her.
During the night, she woke up screaming “I want my lunch.”  Rose usually packed her lunches for school and got to take a special lunch that she picked out herself on Fridays. She had awoken and realized that her special lunch had been left uneaten at school and would be ruined by Monday. She loudly repeated “I want my lunch.” over and over again for almost an hour like it was a mantra. I tried to calm her, but there was no consoling her. By the end of that hour, Rose and I were both hysterical.
I always tried very hard to not let Rose see me upset. We kept a brave face during most of her seizures. This time, I was truly scared that something had happened to her brain. I tried telling her we would get her a new special lunch for Monday, but I knew what she really wanted. She did not really want her lunch back. She wanted today back. I wanted today back, too. Rose knew she had epilepsy again. That awful nurse was right: it had never left us.
The little girl who had the party and her mama came to visit us the next day. They brought Rose a bag of goodies from the party. I always appreciate gestures like this. They mean so much.

Seizure Mama speaks to parents:

Your hearts will be broken over and over again. You must keep going. You must keep living with this enemy. You cannot let it steal your the life from you, your family, and most of all your child. Yes, it will knock your baby down, but you must help him/her right back up. Getting up is what is important.
Do not let epilepsy keep them down. Do not let it have an extra second of your lives. Epilepsy may steal minutes from days, but you can fight for the rest of the time. Make that your life- the time between. Make that time the best you can make it.

Story #10: Expecting and Accepting

Rose enjoyed her year in kindergarten. Her first grade teacher was a delightful, experienced woman. I was the volunteer Rainbow Reader for Rose’s classroom. I enjoyed my time in her room with the students. I went to her class each week and read books out loud to her class. There was always a lot to do in her classroom. The teachers in early grades were expected to assess each child individually. This meant that support was needed for those weeks as the teacher performed the one-on-one assessments with students. I was a certified teacher, so I understood this and was glad to help.
Rose was a good student and an advanced reader. I am not sure whether she was making progress during this year or succeeding due to former learning. We did notice that her hands were shaking when she tried to do certain fine motor activities. Her crayon coloring did not stay inside the lines. Her drawings were sloppier than they used to be. She also had some hearing difficulties. Her hearing was tested and accommodations were made. When some test results came home saying she had reading issues, I had her retested with the evaluator sitting on the side of her “good ear.” The second test results were improved.
Second grade got much more difficult. Because standardized state testing began in the third grade, the second grade teachers were expected to prepare their students for this upcoming year. Rose had a hard time keeping up. The math quizzes were timed. Missed problems were to be worked out and copied over at home. Missed spelling words were also sent home to study. Rose became very frustrated fast. The timer made her nervous. I was not sure she could hear the spelling words. Things were falling apart.
I did not realize how bad things had gotten until report cards came out. It wasn’t her grades that concerned me. It was her tardies. Every morning her brother and she were let out of the car at the same time. He would get to class on time, but she would be late. When I asked her about this, She explained that she stopped to get water, or peek into the library, or walk by her former classroom. In other words, she wandered around the school until the bell rang. This was not safe for her. It was also a sign of her dreading to go to her classroom.
I understood Rose’s frustration. We were struggling with all her “re-do” work at home. But as a former teacher, I knew the pressures Rose’s teacher faced in pushing her students. I remembered Rose’s neurologist warning the we may need to adjust our academic expectations. The drugs were slowing her down, but I did not want to accept this.
I was finally pushed to consult the teacher when my wise father asked me if he needed to make an appointment with Ms.C. I requested a much needed conference with Rose’s teacher. We worked together to augment Rose’s assignments to include shorter spelling lists, and more time for math quizzes. This was the first step in accepting that our academic expectations for Rose had to be altered. It was not fair to Rose to push and overwhelm her.

Seizure Mama speaks to parents:

Pay attention to everything. Is your child happy to go to school? Does he/she finish lunch? Does he/she talk about friends? What does your child do during recess?
So many times I was alerted to problems by some random comment. It is hard to catch every detail when you are busy and have other children. Pause often and try to picture what your child’s day is like. Listen for clues. I still do this when Rose calls home from college.

Story #6: Gilligan at the Lab

Rose’s drug 2D required periodic lab work to check blood levels. She has always been a passive patient. I did not expect her to resist any tests or treatments based on prior experience. So, I was surprised when we had a struggle getting some blood drawn at the local hospital.
We waited in the waiting room to be called. I thumbed through magazines, while Rose sat near the television. When her name was called, I picked her up to head back to a room. She squirmed, so I switched her to my other hip. The lab technician was a middle-aged man. Since she was small, she was positioned lying down on a table for blood to be drawn.
“No, wait!” she said. “But we need to get your labs done. It’s our turn.” said I.
“No, wait! ” she yelled. Rose began to squirm and cry and point at the door.
The man asked if he should tie her down to the table. Now, mama wanted to yell.
I explained that she usually did not resist labs. I also pointed out that if we “tied her to the table today”, we would have trouble just getting her in the room next time. I took Rose back out to the waiting room. I calmly resumed looking at magazines, she went back to the television. I nonchalantly told her to let me know when she was ready to get her labs done.
I kept peeking out from the magazine, watching her. What was different about this time? It was not long before she came and stood beside me. I glanced up from my magazine. “Ready.” she said.
I informed the receptionist at the desk that we were ready to try again. Her name was called. We went back into the room. She lay on the table. The blood was drawn without incident.
As we were walking back through the waiting room to leave, Rose pointed to the television and said, “No more Gilligan.”
She did not mean she wanted to “wait” to get the blood work done. She wanted to go back to the waiting room and finish watching Gilligan’s Island.
Seizure Mama speaks to parents.
All the tests and labs that may be required for treatment of epilepsy may be confusing to your child. You need to put up a good front. They will follow your lead if you act matter-of-fact about the procedures. Discuss what is about to be done. You may even want to draw a picture of the needles and wires. That way they will know what to expect.
I knew that if I let this lab technician tie Rose down to the table this time, that I could not even get her back into a room next time. She would, however, be happy to come back to the lobby to see Gilligan.

Story #4: First Drug Down

Drug “1T” was our first  drug. Now we knew that the cause of the seizures was always in Rose’s brain, not just showing up with fevers. It was a resident, not a guest. We were in a constant state of vigilance. I do not say this lightly. It would be a condition for us that still continued for decades, emergency-ready for twenty-four/seven. Rose nicknamed herself 24/7 because of this. We all tried to play this down, but it was what it was.
With the drug 1T, Rose became more active and hungry. She seemed hyper-emotional compared to her prior happy-go-lucky self. Was this change due to the new drug or an after-effect of the seizure? Her care-free childhood had transformed into a series of tests and medications and worried faces. There was a period of weeks after that long seizure in May that seemed like epilepsy was the center of our universe.
Our family planned a camping trip for mid-June. We hauled the boat and tent to a State Park for a week of fun. Our site was along the shores of a crystal-clear lake. Some friends with a daughter Rose’s age came to visit and spend a day with us out in our pontoon boat. Rose had a lot of fun on this trip. She made her own little play house inside a folded lawn chair. What an adventure.
Her dad and I had discussed what we would do if a seizure occurred during our stay here. We knew where the hospital was. We located the park office. There were officials around who could help, if needed. We made our plans in case of emergency. We had the bag phone. We were cautious, but brave.
During the night on Wednesday, I was awakened by unusual noises and motion beside me in the dark tent. I quickly switched on my flashlight. Rose was seizing. Her face and neck were covered in drool. Her skin looked splotchy. The seizure was short.
I lay back down on my sleeping bag, keeping a hand on Rose. I lay there thinking about what a crazy stupid mother I must be to have my baby here in the middle of nowhere, in a locked campground, in a tent, in the dark. This event was the beginning of one of my paranoid hopes of buying a house across the street from a hospital. That way we would always have medical help close-by.
When Rose awoke the next morning, she was scratching her neck. I pulled up her pajama top. A prickly red rash covered her torso and upper arms. Her lips were swollen. The bag phone was used to call her pediatrician. His diagnosis was that Rose had experienced an allergic reaction to the new drug, 1T.
Camp was broken. The tent was bagged up. Supplies were tossed haphazardly into the pontoon boat and the back of the truck. We headed back to civilization and supposed safety.
We stopped by the doctor’s office then pharmacy on the way home. This drug was not the right one. There were more to choose from. Lots more. Surely the next one would do the trick and stop the seizures without side effects. Seizures had been around for centuries. Surely there was an effective drug to fix this.

Seizure Mama speaks to parents:

A drug is a drug. It is a chemical compound, not a magic wand. It does what it does with the other chemicals in the body. Drugs are not dynamic substances. They work or they don’t. If a drug is not working, move on.
After trying several different drugs, we began to feel obligated to give each new drug more time. Determined to give each more chances than it probably deserved. We were afraid to damn each one for fear there was not a new drug waiting in the wings. Learn their names. Know their half-lives. Keep records of their effects and side-effects. When the evidence shows that the drug is ineffective, move to another or a new combination. Do not linger with a drug failure.
My charts of drugs and dosages, seizures and side-effects gave us confidence to move forward in terms of medications and treatments. It also eliminated “re-inventing the wheel” when we had to change doctors or go to a new clinic for tests.

Gifts from Epilepsy

The title is not a typo.

Yes, gifts from epilepsy.

Falling down over and over again forces you to practice getting up.

Shunning gives you thick skin.

All your friends are true, because the fake ones ditch you.

You get more grit than most people on the planet.

A huge, wide-open heart is acquired.

You get to be an expert at empathy.

You get really good at feeling the fear and doing it anyway.

Make no mistake, epilepsy is a foe not a friend.

It steals your freedom. It robs you of your peace.

But it does give certain gifts, whether you want them or not.

Gee, thanks.

 

 

 

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

 

 

Epilepsy Foundation 24/7 Help Line

https://www.epilepsy.com/living-epilepsy/247-helpline

I saved this link so that I could find it again.

Our newest issue is that our insurance wants to “encourage” switching to generic forms of Rose’s medications.

Generics are NOT the same as name brand drugs.

We have experienced two accidental switches in our twenty-three years, both times the results were terrible.

So here comes our next battle.  Not seizures…Insurance.

Seizure Mama