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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-seizure 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 drug roulette regimen made everything worse. Rose was not herself before a seizure nor after a seizure. She was lethargic, floppy, and dopey. She moved from her bed, to a chair, to another chair, and back to her bed. The seizures came with us wherever we went. She seized in restaurants, at birthday parties, at Brownies, in the yard, watching television, in a big box store while shopping for a helmet, at a family reunion and even in swimming pools.
We took a plastic Adirondak chair with us on outings. The chair reclined slightly, so she could seize in it without falling out. For us every party was BYOC(bring your own chair), and of course the seizure bag went with us everywhere. We evaluated the risks of each outing. Should we go eat at this restaurant? No, it would be too hard to carry her out through the gift shop. She we go to a ballgame? No, seizures in bleachers are too dangerous. Should we go? No. Eventually, we stayed home waiting for the next seizure. I really wanted to buy a little wheelchair, so we could go places, but was advised against it by other family members. Rose would look handicapped and feel handicapped. Yes, but she would be safe.
We walked everywhere linked arm in arm with her. A fall could come at any second. We went up and down our stairs as a unit so she would not fall. We called this method ‘stair pairs.’ To go down Rose would put her left hand on the person in front’s shoulder and her right hand on the handrail. The front person would put their left hand on hers and also hold the rail with their right hand. Going up would be reversed with her escort behind her. Rose would announce when she wanted to go up or down and someone would stop what they were doing and escort her. We made it a point to not say no to her requests to use the stairs. There was so much she could not do at this point; at least she could be free to move about in her own house.
When no one was in a room with Rose, her father, brother or I would whistle two notes and she knew to echo the two notes back. We whistled instead of calling her name so she knew we were just checking on her instead of needing her to come to us. We whistled to her about every three minutes. It got to be so much of a habit that I would catch myself whistling notes when Rose was not with me. She slept with me during these terrible months. Sometimes she would whistle in her sleep. We referred to this as “echo whistling.” If she did not repeat our two notes we would call her name. If she did not answer, we would rush to find her. Sometimes she was just too busy to answer, but a few times we would find her unconscious, leaving me feeling feel guilty about leaving her alone. Negligent for three minutes. Shame on Seizure Mama!
Take a chair, echo whistling, stair pairs. This is how we kept her safe as the seizures took over our lives.

Seizure Mama speaks to parents:

You need to devise methods like ‘echo whistling’ and ‘stair pairs’ as part of your everyday routine to keep your child safe. We used two notes for ‘echo whistling’ because Rose had complex partial epilepsy and could do repetitive automations, even at the onset of a seizure. She could probably whistle during these periods, but could not echo the two notes from someone else.

We had felt good about the first neurologist in the beginning. The doctor was observant and thoughtful. We had previously left each of our appointments with several written plans of action in case the first option did not bring the results we hoped for. If plan ‘A’ did not work, we also had plans ‘B’ and ‘C’ if needed. Now we felt like Rose was part of a chaotic experiment without planned strategies or goals.
Rose had a long and strong seizure the day before this appointment. She slept on the way to the doctor’s office and wouldn’t hold her head up during the visit. The doctor seemed not to notice Rose’s lethargic condition. Instead I was scolded for the numerous calls I had made to the nurses. The doctor mentioned wanting another EEG(electroencephalogram) and mentioned the possibility of VNS(vagus nerve stimulator) placement.
We were taken aback by these suggestions. We thought we had come for a much needed plan for our next trials with different medications. Instead it seemed that we were at the end of the medication regimen and headed for surgery. Our instructions were to stay on drugs 3S, 4L and 5Z. Stay on these three drugs? What we were doing was not working. Why were we not doing something different?
Here was our nine year old daughter slumped down in a chair, pale and unresponsive and we were supposed to continue on with these same drugs and dosages. We left the appointment and went downstairs in the building to eat lunch at one of Rose’s favorite restaurants. Rose’s hand was so shaky that she couldn’t use a fork. I had to feed her the slaw. I was feeding my nine-year-old because she could not feed herself, but there would be no change in her treatment? This was unacceptable and infuriating.
We all went back upstairs to the doctor’s reception area. I was so shaken that I could barely speak as I explained to the receptionist why we were back. We had to wait until all the other families finished their appointments before the lunch break. It was interesting watching the other struggling families while we waited. The parents were anxious while the children were bored and restless. One father was irate and loud about a mistake that was made by the receptionist.
Finally we got to speak with the doctor again, and before we left we had a new plan. I had the doctor write it down. I still have the paper. Rose was to go down on 4L, off of drug 3S go up on drug 5Z and add a new drug 6K. Was this a plan or a punishment? This was like playing a game of roulette using strong drugs on a young child. Was this new plan better than no change? It gets worse from here.

Seizure Mama speaks to parents:

You must be politely proactive. Although different dosages and a new drug made things worse in this circumstance, sticking with the same regimen would have prolonged the process of finding the right combination. Months later we concluded that 4L was the drug from hell. We never found the therapeutic dose. The effective window was so small that we shot past it and Rose eventually went toxic on this drug combination.
Keep good records and write down everything. Things got so bad that I couldn’t think straight. I was a wreck during these months. We felt damned. Maybe you know how that feels. God help us all.

Please forgive me, but I must step away as Seizure Mama for a break.

I have been pushing too hard. It has taken its toll.

It was hard enough loving one person with epilepsy.

Now there are dozens of you. Your stories, your sorrow…

I could not stop crying this morning… this afternoon…

So I am going to step back and just be Flower the garden blogger

just for a week or two.

You know where to find me.