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.

Toxic with a Timer

Story # 23 (August 2002)

Rose’s latest drug combination became a recipe for disaster. Now she was constantly dizzy and nauseated. She was limp and barely moving or responding. She was silent. She was being poisoned.
We put her on the couch so we could all keep an eye on her. At this time, she was on three drugs,one of which was an extended release form. One drug must have amplified the affects of the other two. Her nausea and vomiting soon turned to dry heaves and bile. Her seizures were clustering. We knew she was in danger.
We called the on-call neurologist at about 11PM. The doctor’s foreign accent made our conversation difficult. My husband and I were both on the line listening. We thought the doctor said to use the emergency drug if Rose had another seizure and then take her to the Emergency Room if she had another seizure after that. Was that really what the doctor said? Two more seizures and then the ER?
The next morning Rose was very pale, weak and, listless. She barely moved. We tried desperately to get her to eat and drink each time she woke up. She was fading before our eyes. I called the doctor’s office as soon as it opened to report Rose’s condition. I cried as I explained that she seemed poisoned by these three anti-convulsant drugs.
The wise nurse calmly told us to get a timer. She said to set it for twenty minutes. Every time it went off, we were to wake Rose up and make her sit up, and sip some water. We set and re-set the timer all day long. For hours we watched her and waited for the timer’s bell to ring, over and over.
Hours later she began to improve. The poison was being diluted. Rose was re-hydrating. The color came back in her face. She was safe. No trip to the Emergency Room required.

Seizure Mama speaks to parents:

We kept gel in the refrigerator to put on Rose’s arm for nausea. There were several times when her vomiting led to seizures because she had thrown up her medication. We began sifting through her vomit if it occurred soon after a dose of medications. I know this seems gross, but you need to know whether a dose needs to be replaced or not. Doubling a dose may be worse than missing a dose. You need to be sure which to do.
This particular situation was the exact opposite of seizing due to lack of medications. Rose was sick and seizing before ever throwing up. Her dosages were too high. The combination was too much. She was listless and unresponsive. I still distinctly remember this because I was so afraid.
Know your child’s dosages and drugs. If you go to the Emergency Room, drawing blood and checking drug levels may be an important piece of information for the doctors involved in the treatment.
We wrote down all dosages on a calendar and used a pill organizer. There was no guessing about the medications that were taken. We also recorded how the dosages affected her. This information was used to convince the neurologist that she needed a different drug or combo. Do not count on your memory. Write it down.

The Forgotten Fob

We moved Rose back to the university yesterday.

She did all the packing. We just helped load and unload the truck.

Just before we left, as an afterthought, her dad suggested I check the medication drawer.

I did it just to make sure a bottle of medicine had not been inadvertently left behind.

What I found instead made my heart stop.

She had forgotten her fob.

IMG_8323

Her necklace with all her epilepsy information and a fob with emergency pills in it.

This is her lifeline.

(I had to pause while typing this and take a deep breath.)

I took the box with the necklace, tag and fob in it to where she was

and held it out for her to see it.

I told her “If you have a seizure and no one knows what to do you could die.”

She nodded and looked down guiltily. Her response was “I did die.”

“Yes,” I replied “but I saved you. I will not be there next time.”

She has had her helicopter mama all summer. Maybe she just forgot where it was?

Maybe she wants to believe epilepsy has left her.

It is a nice dream.

But she must be prepared for the next seizure, even if there never is one.

This epilepsy belongs to Rose now.

I hope she will not forget the fob again.

Seizure Mama = standing down.

 

 

 

The Emergency Delivery

Story 16:

Rose was busy playing in our workshop, which has a concrete floor. Her dad and I were both busy with our own art and construction projects. Rose was making something of her own while standing at my workbench. She suddenly seized and fell to the floor between the workbench and the sink. Thankfully there was a large, but dirty, rug under her on the floor.
The first dose of her emergency medication did not stop the seizure. We waited a few minutes and then used the second syringe. Finally the convulsions stopped and she lay still on the floor. Our relief was short-lived. We realized that we now had no more emergency medication and it was a Friday afternoon.
I called our friend at the pharmacy and explained why we needed more of Rose’s emergency medication as soon as possible. Unfortunately,this particular drug was not kept in stock because it was very expensive and had a short lifespan. It also had to be protected from temperature extremes. The pharmacist explained that the drug would have to be ordered and then delivered, which would take time.
He knew, just as we knew, that we may not have that kind of time. We could be in the middle of a status situation with nothing to save Rose. The pharmacist was thinking out loud when he offered that maybe he had some of a “dead girl’s medicine” at the other pharmacy. A dead girl’s medicine? We needed a dead girl’s medicine to save Rose. I was so stunned that I hung up the phone before I started crying.
We knew that Rose’s emergency bag with more medication was in the principal’s office. It was 4:30 on a Friday afternoon, but maybe someone would answer the phone. When I called the school’s office, the assistant principal answered. She and the guidance counselor were there wrapping Christmas gifts for needy children and their families in the community. We told her what we needed and that one of us would immediately come and get the big red bag. She offered to deliver the bag to us, so that we both could stay with Rose.
Here was one good person taking her time to do something helpful. What a blessing. We could relax. The drugs were on their way. Rose would be safe now. What a gift that was.

Seizure Mama speaks to parents:

Saved by the bag again. I cannot stress this enough. You must always be prepared for a seizure. It is the only way your family can carry on responsibly and safely. You have no choice about where the seizures occur, but you can make the choice to always be prepared.

I want to add here that SUDEP or death by seizure will always be in the back of your mind if your child has the tonic clonic/grand mal type of seizures. Hearing the pharmacist offer a dead girl’s medicine, first sent my mind to her poor family and then to the possibility of Rose’s death. No one wants to have these thoughts. There is no point in dwelling on such sadness.

Yes, living with epilepsy is like living with a terrorist or a time bomb. But none of us knows what will happen in the future. Your life is now, with this precious child of yours, so live it now. I call it “nower.” It means the power of now. That’s all anyone has. Live now. Whatever will be, will be.

Story #34: Down in the Band Room

When Rose started to middle school, Mama went, too. There was an eighth grade science teacher opening which I applied for and got. There was a collective sigh of relief from all of our family and friends. The middle school was too far away from our house. I could not get there fast enough if there was an emergency. The route there was all two lane roads. What if there was a tractor, a train, a wreck…?
So Rose’s mama went to middle school. It was a good thing I did. There were sicknesses and seizures that had to be dealt with. The entire staff knew that Rose’s mama was only an intercom call away. I would hear my name followed by “Get to the gym.” or “Go the nurse’s office.” I would take a deep breath and run toward Rose as someone met me in the hallway heading toward my classroom to watch my students during my absence.
Adjacent to my classroom, I had a storage room for science equipment. We kept a fold-out cot with pillows and blankets in it for Rose to sleep off her seizures after being rolled to my room in the closest available rolling chair. It was a comfort to Rose and me that I could peek through my back door and check on her without missing a beat teaching my students.
This is how we handled her emergencies during those years. We were still searching for the perfect combination of medications. She had some learning issues and hearing issues. Then there were several surgeries. Rose needed support. I was the “mama in residence” again, there to make sure she was taken care of.
On a particularly hectic Friday, I was called over the intercom to the band room. There was a band concert. Rose played the trumpet in it. I ran to the band room to find her unconscious on the tiered floor among scattered chairs and music stands.
(Please pause here to envision this setting. A stair step type floor plan, rows of chairs on each level and tall, black, metal music stands everywhere. Lord, could we not have this seizure somewhere else?)
Two other staff members stayed with us in the band room until Rose woke up. Instead of her normally docile self, she woke up swinging. I could tell she did not know where she was. Sometimes she is blind after a seizure. I kept trying to talk calmly to her, but it was as though she did not recognize my voice. I tried not to panic as several music stands were knocked down, which caused more to fall. There was a domino-effect. More crashed to the floor. It took quite a while to get Rose calmed down. The band students were waiting outside the door. They needed to put their instruments back in their cases. It was time for school to let out. They needed to come in and get ready to go home.
Rose’s dad and brother came to help us. I made a call to the our neurologist. Drug 8K dosages would be increased. No one lost her head. The show must go on.

Seizure Mama speaks to parents:

I was very fortunate to get to work at Rose’s school. It got us through those years. They were not easy for any of us. I was a trained high school biology teacher with community college experience. I would not have chosen to teach middle school. I loved my students and my peers, but the stress slowly took its toll on my health. I knew this was not going to end well, but I had to make it through seven years.
The high school was right across the road from the middle school. If I did not get a job there when Rose went to high school, I would just remain the sentry across the street, only a phone call away and a quick drive across the road. The drive over would be followed by a panicked run to a designated location. I could endure seven years in eighth grade to save Rose. I could do that. I thought…
So what does this mean to you? There will be many sacrifices made for your fragile child. Do not let your own health be one of them. I lived through my time in middle school, but damage was done. I am better now, but there were times when I was truly terrified for my own well-being. I am very protective of myself now. I have to survive Rose’s seizures, too. Rose needed me whether she liked it or not. We were tethered together by her epilepsy. If one of us went down, we both went down.
Take care of yourself, too. United we stand.

Story #28: The Epilepsy Monitoring Unit

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 Rose’s 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 to 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. The 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.

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.

Story # 18: 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 home bound 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.