The Epilepsy Monitoring Unit

Story #28 (October 2002)

It was past time to put all the cards on the table. We needed answers about where these seizures were coming from, why they were occurring, and what triggers were unleashing them in her brain. It seemed we had been trying to put together a puzzle without looking at the picture on the box. Would a stay at an EMU finally reveal the whole picture? Could we handle the whole picture when we got it?
Would this epilepsy monitoring unit give us the answers we needed? Would the electrodes finally locate the source of these electrical storms inside Rose’s brain? I felt like these hundreds of seizures were clearing pathways through Rose’s brain, so that the seizures could go farther and faster, like there was some kind of cumulative effect.
I was truly afraid of weaning her off her medications. Would these seizures be allowed to run unhindered through her young brain, or were they doing that all ready? All we knew was we were in the right place to get answers. We had faith in this hospital and its doctors and nurses. That in itself was a great comfort to us, even Rose. We needed expert help and now we were closer to getting it. Risks or not, this was no life for Rose. She needed fun instead of fear.
The technicians that glued the electrodes to her head treated it like a spa treatment. Rose emerged with a lovely, long ponytail of colorful wires. She felt pleased and pampered. A gauze cap had to be wrapped over her head to keep the electrodes in place when she lay down. No matter, her flowing ponytail was a hit. The other end of the electrodes were hooked to a box in a pack that she wore allowing her mobility.
During our week-long stay, Rose had six seizures. It took four days of weaning down on her medications to get them started. Those last days were scary. Once the data was collected, some medications were returned, but on low dosages. I knew these dosages were too low. I showed one of the doctors our chart which showed that Rose had experienced a long and strong seizure on the same particular mix and dosages that Rose was leaving on. Dosages stayed low so a long seizure followed shortly after we arrived home. Emergency medications were used. A call was made back to the EMU, dosages were then raised.
I am a doctor’s nemesis. I am the mom with the clipboard and pen. Once during our EMU stay, a senior doctor came into Rose’s room with a group of medical students. I rose from my chair as they entered, clipboard and pen in hand. “Oh no!” slipped from the doctor’s lips as he saw me. I stood in the circle with the young doctors as they discussed Rose’s case. Mama and the medical students formed a circle around her bed, all of us trying to learn-they to save the world, me to save my daughter. Bless us.

Seizure Mama speaks to parents:

Weaning off medications is a scary necessity in the Epilepsy Monitoring Unit process. Without the medications masking the brain’s electrical activity the electrodes can detect what is happening. In the Phase I process the electrodes are glued to the outside of the skull. These sensors show the brain’s activity as squiggly lines on an EEG. These external electrodes cannot detect activity deep in the brain. This Phase I process lets your team see what is going on in the brain as the patient is doing different activities, including sleeping. Do not be afraid of the electrodes and glue. The glue does wash out eventually. You may need to use an oily substance, like mayonnaise, to remove it.
Do not expect answers right away. The team must meet together and discuss the results before considering the next course of action. This may take weeks. Be patient. Take comfort that more trained professionals are trying to help your child.

What do you Need?

As I am putting the finishing touches on our book,

I keep telling myself to “remember my audience.”

I want our book to help parents of children with epilepsy.

I have honestly documented events in our lives.

I have added a “Seizure Mama Speaks to Parents” after each story.

A letter to parents begins the book.

An epilogue tells about writing the book and blog.

The last chapter is about letting Rose go it alone.

That was always the goal.

What else do you need parents?

I am thankful to have this blog,

so I do not TOTALLY feel this is our ONE SHOT.

I want to do this right.

HELP ME HELP YOU.

I need honesty from my “OTHER MOTHERS.”

Seizure Mama/Flower Roberts

Image by our fabulous publisher JAHBookdesign.  Just the beginning…

Afternoon Lessons

Story 26 (fall 2002)

Rose stayed home from school during the first semester of the fourth grade,since she was having several seizures per week. They were not like clockwork, so we stayed poised and ready at all times. No one ever really relaxed. Every loud sound sent us running toward it. I helped her wash her hair before letting her have a few minutes of privacy behind the shower curtain. I sat on the toilet while she washed. When the curtain opened, I wrapped her in a towel and quickly dried her hair. We avoided both hot and cold extremes, since we thought her seizures might be triggered by temperature fluctuations. The bathroom floor, which was ceramic tile, was covered by numerous rubber-backed rugs in case of a fall.
At this point we rarely left her side. She seized everywhere doing anything. When we went places we held on to her. She got in the habit of walking everywhere arm-in-arm with another person. We carefully picked where she sat. Was the chair stable and sturdy? If she fell, what would she hit? I am sure other parents were puzzled by our behavior. Observers could not see anything wrong with our lovely Rose. We must have seemed like over-protective, hover-smother parents. We got looks and sometimes inquisitive comments. These meant nothing to us. We knew we had to protect Rose from gravity. A hard fall meant a hurt face, or shoulder, or arm. She could be thrown down with great force at any second. There was no place to go where there was no gravity, so we were there to stop the falls. If the seizure/terrorist did not show up today, and we had not seen it yesterday, then it was coming tomorrow.
So we spent most of our time that year alone in our seizure-ready home full of rugs and pillows. Few folks came to visit. We did not want much company. We disappeared off everyone’s radar. It was just us, Rose, and the epilepsy, trying to get through each day safely.
The elementary school sent Rose a teacher. He would arrive in the afternoons. Our library room would be straightened and dusted, readied for his visits. The table in the center of the room was cleared and polished. The ceiling fan would be turned on low. A snack would be prepared for presentation to Rose’s guest. I would meet Mr. F at the door with a smile. Rose would be dressed and ready for her lessons.
These afternoon lessons were a blessing to me and Rose’s brother, as well as to Rose. The teacher acted as our back-up Rose-monitor. I could retreat to the kitchen to fix supper, within ear-shot. I could not discern what Rose and her teacher were saying, but I could hear the steady rhythm of her teacher’s voice, punctuated by Rose’s laughter. She loved Mr. F’s visits. Sometimes he was the only non-family member she saw during the week.
My son enjoyed these afternoons as well. He got on his bike with a walkie-talkie attached and rode through the woods surrounding our house. He knew he could be called back home if needed. Mr.F was there, so he could relax. These afternoons were a respite for him. He loved riding his bike and he felt peace in the forest. All was well during the afternoon lessons.

Seizure Mama speaks to parents:

You cannot do this alone. Being on edge every minute will poison you. It will poison your whole family. Get some support. All of you need some relaxation and rest. You are playing a long game here. Do not put your life off until this is over. This is your life now. Things may change for better or worse, but now is what it is. You all have to survive and thrive together.
These afternoon lessons let my son be a little boy for a few hours. Being a big brother is a huge responsibility when the little sister has seizures. At these times he could be free to ride fast and dream big. He would later become a mountain bike racer. He and his dad enjoyed this sport together. Those seeds of passion were planted on those afternoons when he could just be himself. I will always appreciate Mr. F for the gift he gave to both my children.

Female Fights for an Accurate Diagnosis

I appreciated this honest memoir Brain Storms: An Electrifying Journey by Kate Recore.

She did a great job of conveying her years of struggling with epilepsy.

Unfortunately she also had struggles with bad doctors also.

She was misdiagnosed by a male neurologist who diagnoses her issues as mental and emotional NOT physical.

He was forced to change this opinion after a second EEG confirmed seizures.

Insurance HMO’s did not help in Kate’s quest for help.

I got the sense of her maturing as the book chronicles her young adult years of trying to become independent.

She fells that sharing her story will help other young women dealing with sexist or paternalistic physicians.

I am super proud of Katie Scarlett Taylor for blazing a trail for young ladies like my Rose.

Thank you Kate Recore!

 

 

A New Neurologist

Story 26 (September 2002)

After the toxicity scare, we no longer had confidence in neurologist #1. The doctor’s responses to our questions seemed short and unfocused. The drug and dose changes that she recommended seemed random. Our chart of drug changes was full of changes in dosages and seizures.
We asked for a second opinion. This first neurologist sent a letter of introduction for Rose to another neurologist in a different city. The letter described Rose’s condition and drug trials and requested a second look at Rose’s possible treatments for the future. I bet neurologist #1 was happy to pass hot-potato Rose off for some re-enforcements. I appreciated that a second specialist was going to have input into Rose’s care.
Our first visit with neurologist #2 took hours. He was very thorough and reassuring. He wanted to nail down the type and source of these seizures. He felt that Rose had been prescribed too many drugs on too small doses to rule them out as an effective treatment. He wanted Rose in an Epilepsy Monitoring Unit(EMU) to get a video-EEG. He said he felt we had been yawing around the pond of treatment choices.
This was a relief for us. We felt the same way. I was like Rose had been part of a badly designed experiment with too many variables. We were now going to get some hard data we could use to get better results. We finally felt hopeful.
We felt like this doctor heard what we were saying and understood what we were feeling. We didn’t just want to try something new. We wanted what we did next to be the right choice, not just a random change. We needed all the cards to be put on the table. It was time. Rose needed to learn and grow, not fall and fail.

Seizure Mama speaks to parents:

No one doctor knows everything. Each has his/her own training and experiences. It is always good to get a second opinion. Do not be afraid to ask for one. It may be just what you need to get a better result. Your current, struggling physician may appreciate your nicely worded, respectful request.
Do not, however, bounce from one specialist to the next in hopes of finding a quick fix. Patience is needed when trying out drugs and doctors. Do not secretly sneak around because each physician needs to see all your child’s records to make informed decisions and avoid repeating failed treatments.
I would also advise getting a second opinion for any surgical procedure. Even though installing a VNS(vagus nerve stimulator) may be a simple procedure, the device is permanent. You are making decisions for your child. Do it carefully and wisely. Get as much input as is reasonable.

An Inspiring Memoir

If you feel your epilepsy is holding you back, you may need a dose of Jon Sadler.

I was amazed by his tenacious nature over and over again.

He became an engineer and then earned a masters in counseling.

He sailed boats alone and hiked the Grand Canyon.

He was a scout leader for his sons’ troop.

He kept going through seizures and surgery.

This book will be a confidence booster for any adult with epilepsy.

Jon Sadler shares his amazing history in Sailing Through the Storms of Seizures.

His “no excuses” attitude is catching.IMG_0032

 

Dinner for Two

Story 25: February 2002

When the seizures were relentless, we never left Rose. EVER. This is no exaggeration. I stayed with her almost one hundred percent of the time, even when her dad was at home. I was a scared steadfast sentry. Once every few weeks I would go out shopping by myself. It seemed strange that the world was going on as if nothing was wrong, while we stayed home waiting for the next catastrophe.
On one of my rare outings, I ran into a mother of a boy who was on my son’s former coach’s pitch ball team. I had not seen her in years. She was wealthy with a healthy son. She proceeded to bend my ear about all her problems. They had to clean their rental condo at the beach themselves. Her parents needed her to drive them to doctors’ appointments. She continued to list her problems for many minutes. I do not know why I did not walk away. This was my brief period of time out in the real world and I was standing in a store listening to an acquaintance complain.
Our world was tiny and tense. Rose’s dad and I were not a couple, we were a tag team. Somebody had to work. Somebody had to shop. I was holding down the fort single-handedly while my husband and son went on and went out. This was a tough time in our marriage. We were Rose’s parents and protectors. We were mom and dad, not mister and missus. There was never a chance to be alone together. We were on duty twenty-four/seven.
We expected Valentine’s Day to be more of the same- the four of us, at home alone. But my sister-in-law had different ideas. That evening she and my brother-in-law and nieces appeared at our door. She had cooked a romantic dinner for two and brought pizzas for everyone else. As they ate pizza in our library, Rose’s dad and I sat at the kitchen table alone, enjoying a delicious meal. It was hard to know what to say to each other. Our conversations were always about the children, planning the next doctor’s appointment, discussing drugs and side effects, planning a school project, or scheduling our son’s transportation to races.
What does one talk about during the eye of a tornado? We mostly enjoyed our silence as we listened to the chatter in the next room. We were thankful to have family and happy to be together but not alone. That romantic dinner was a shot in the arm, a booster to keep us going as a couple while we struggled as a family.

Seizure Mama speaks to parents:

First, do not be that woman in the store. While you are standing there bombarding someone with all your issues, they may be silently suffering with more problems than you ever dreamed of. Don’t be a “Debbie Downer.”

Second, you are not just your fragile child’s parent. You have other children, siblings, parents, friends, and coworkers. These people need you and you need them. Let them know how to help you. They want to, but are not sure what to do. When Rose’s seizures occurred frequently, the families in our church took turns bringing us meals. We loved seeing our friends and doing a little less cooking and shopping. Rose got to see folks other than her tense family.

Lastly, a divided house can not stand. You need to stay married. Don’t keep your child as a barrier between the two of you. Someday your baby will grow up and move on, and two strangers will be sharing your house. You are not just modeling parenting; you are also modeling a marriage.