Author: Flower Roberts

Reposted Chapter 26: A New Neurologist

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. It 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.

Reposted Chapter 25: Dinner for Two

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.

THEN and NOW to follow. I recently found photographs of this event. Such a sweet gesture by a sweet sister-in-law.

I am an analytical person. I look at things and immediately see potential for improvement. (This is a nice way of saying that I see what is wrong.) Of course my next step is to try to fix or improve the subject that I am observing. Sometimes it becomes an obsession.

I trim, I paint, I rearrange, I replant, I move things and remove things. This seems to be a harmless habit until the subject is something I have no control over.

That’s when the “shoulds” show up. That should be done this way. This should not have happened. Somebody should fix that.

Do the “shoulds” change anything? Can I change everything? NO FLOW!

I am in the midst of a “Should Storm” right now. I am surrounded by things that are not what I expected, or wanted, or needed. I could drive myself insane obsessing. I could butt in to business that is not my own and interfere, but since no one has seen fit to pronounce me Queen of the World I must stand down.

I must be patient. I must hold my tongue. I must accept these unwanted happenings and unwelcome changes. This is not my usual mode of operation. I usually move in and take charge.

Have I given up and given in? I hope not.

I am hoping this is wisdom. It is about time some of that showed up.

Mama Flow

I have learned to truly appreciate kindness as I get older. I have watched how important being kind to one another really is as the world has gotten more political and divisive.

As a mother, I always tried to teach my children to be kind. I encouraged gentleness with all living things. I guided them to be quiet and respectful with old people. I wanted my children to make the world a better place.

Meanwhile, I modeled something quite different. I am angry. My plans for myself and my daughter have been high-jacked by epilepsy. My career was side-tracked. My retirement was greatly reduced. I became a prop in Rose’s world. This was my doing. I thought that if I gave up more…she would have more. But that is not how the world works.

My anger seeped out while Rose was watching, since we were always together. It was usually not directed and her, but I feel somehow she knew that my rage was related to her. We were tethered together for months at a time while the seizures were at their worst.

I modeled meanness. I yelled at other drivers. I growled under my breath in stores. I threw things. I used profanity.

Rose was watching and listening. I had mentored my children correctly, but my modeling was horrific. Do as I say, not as I do?

Rose is a good person. She is kind. When she spews anger, I see myself and I am ashamed.

Do not do as I have done, Another Mother.

Mama FLOW

Reposted Chapter 24: Kind Kids

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.

MAMA has a lot to say about this one.

(Reposted Chapter 23: Toxic with a Timer)

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.