Story 24: June 2002
Of course epilepsy came on vacation with us. Rose had three seizures during our week at the beach. Two occurred while she was swimming in the pool. She always wore a life jacket in the water and someone stayed an arm’s-length away. I knew it was risky to let her swim, but she loved it so much. We live on a lake so our family and friends swam a lot. We could not forbid Rose from participating in something we all enjoyed together. If she seized in the water, we just held her until the seizure ended and carried her out to a lawn chair to sleep afterward. We suspected extreme temperature changes triggered seizures, and so we tried to avoid the water in the mornings when it was cooler. We also covered Rose with a towel when she got out so she would not get chilled.
Rose also loved the ocean,but swimming with her among the waves made me a complete wreck. I was afraid we would both go under if she seized in the ocean. She was content to go in for only a few minutes and then play in the tidal pools with her shovel searching for little fish and shells, and building sand sculptures.
One day Rose and I had just walked down onto the beach and picked our spot on the edge of a tidal pool. I set down our bags and towels just as Rose fell face first into the sand. I placed her on her side to seize, as I tried to wipe off some of the sand that stuck to her face. A nice lady nearby offered me a bottle of water to wash her off. The seizure soon ended, but Rose was covered in wet, sticky sand. I swaddled her in a towel and sat close beside her to wait out the thirty minutes or so it would take before she woke up. My family could see us from the porch of the condominium, so I knew help would arrive when someone spotted Rose lying still under a towel.
While I was sitting quietly beside Rose, two boys about her age walked by. They were carrying a surfboard, table-fashion, covered with an assortment of shells and seaweed. They both glanced at Rose as they passed, but soon put down their board and walked back to me. They asked what was wrong with Rose. I explained that she had had a seizure but would be fine when she woke up. I asked about the treasures they were carrying on their board. I shared that Rose would have loved to see their haul from the sea if she were awake. They walked back to their board and one returned carrying a giant pin shell. “Give her that when she wakes up” he said. We still have this treasure.
Seizure Mama speaks to parents:
There will be many children who do not understand seizures Some children will be afraid of your child after seeing him/her seize. There will be a stigma. It will be harmful and painful.
There will also be children with great kindness, who will be protective of your fragile child. They will be loyal friends. Relish the memories of the kind kids. They are the angels of this broken world.
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.
Story #22 (Most of 2002)
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, in a funeral home 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 technique 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.
I had just returned from a trip when Rose called to report her sickness.
I left my suitcases packed. I left my phone on all night. I did not sleep.
I was back in Mama Mode.
I was ready to jump in my car and speed to the rescue.
Rose assured me she would be fine. She just wanted advice.
I wanted her to call 911 if she vomited. Imagine that. Ridiculous!
She texted the next morning that she “woke up perfect.”
I got to unpack my suitcases and take a nap.
I keep my helicopter gassed up and ready to hover.
Painting the Whole Picture by Joshua Holmes tells the whole story of life with epilepsy.
I was amazed and impressed by Joshua’s family’s efforts to help him overcome his cerebral palsy and epilepsy. This is a book for families. It’s a good model for how to help children by making them do things for themselves instead of enabling. Determination was modeled and encouraged.
Joshua shared his various struggles during grade school, college, careers and living independently. These events were not sugar-coated. He let us see the process of resolving problems.
I admire his tenaciousness and courage. I liked that the book included photos of his family and his art. It made me feel like I know him as a whole person.
This book is another great resource for folks with epilepsy and their families.
Joshua Holmes has written other books. You may want to look him up.
Seizure Mama/Flower Roberts
I will be putting this book on Rose’s desk for her to read while she is home.
Speedbumps: Living with Epilepsy by Jonathan B. Dodson is his voice telling his story.
The book chronicles his life from his first “speedbumps” and seizures to being an adult.
The book is easy to read and divided nicely.
It does not get bogged down in medical details or side-stories.
His tale is streamlined well so that young readers can read it over a weekend.
This would be a great resource to put in the hands of teens struggling with epilepsy.
I appreciate Jonathan and his family for putting together such a useful book.
Seizure Mama/ Flower Roberts