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I have learned not to worry about Rose.

After twenty-four years of being Seizure Mama, it’s a necessity for my own survival.

I am very aware of the stress level of college students right now.

I used to teach college biology, so I understand that this part of the semester

is a race to the finish line for students.   Actually, there are four or five finish lines.

Add in spring fever, plans for summer trips and  a summer job

and you have a tornado of stress.

We know what that means.

I am thankful that Rose is an experienced student who does not procrastinate.

I count on her to make good decisions.

She is in charge of herself. My worrying will not do anything but harm me.

Still.   I plan to keep very busy these next four weeks.

Just in case I try to wander into the “Worry Maze.”

(That’s what I call it when the “What Ifs” try to sneak into my thoughts.)

STUDENTS with seizures: Take care of yourselves until the semester ends.

Good sleep, good food, good exercise, study in spurts. No 24 hour marathons.

PARENTS:  This is their ball game. Stay in the stands.

Seizure Mama

This is from my other blog which is usually about gardening.

The fairies only show up on holidays.

Just so you know. Rose was in the bed during the egg hunt.

She says she doesn’t play with fairies. Sigh!

Fairy Egg Hunt with a Hitch

Flower Roberts/Seizure Mama

Kidney stones in a ten-year-old girl are quite unusual, but this was an unusual girl. The kidney stone that blocked Rose’s ureter was surgically removed. The other was later pulverized by lithotripsy. Rose was sent to yet another specialist in another city. This urologist happened to be at the medical complex where Rose was now a regular as an epilepsy patient. We joked that she was like the character “Norm” in the sitcom Cheers when she arrived, “Everybody knows her name.” Our little sickly celebrity.
Rose’s trips to the specialist included bringing a jug of urine which had been collected with the help of a big “plastic hat” in the toilet. The jug was kept in the refrigerator. Urine in the refrigerator, hats in the bathroom – ours was not a usual home.
The chemical content of the removed stones would give us some indication of what might be causing them. We  would learn later that the culprit was our latest beloved drug 6Z. We wanted to keep Rose on this drug because it was actually working. Could we keep the drug, despite its causing the stones?
The urologist’s response to that question was that we would end up “shoveling sand against the tide.” He described the stint that had been removed after her kidney stone surgery as being completely encrusted with crystals. The stones were definitely a side effect of her medication. Seizures or stones. Those were our choices.
Now that we knew the cause of the kidney stones, we had to go back to her new neurologist to pick out a new epilepsy medication. Rose was weaned down on drug 6Z and drug 7Z was added to her daily cocktail. Would this new drug control her seizures? Would it bring new side effects? We never dreamed what would happen next. We were getting used to expecting the unexpected, but even I got blown away by this next event.

Seizure Mama speaks to parents:

We were way out of our league by this point. I knew nothing about kidney stones. I did not understand how an anti-epilepsy drug could cause them. It has taken me years of reading to know what I know, which is still very little. Drugs contain the compounds that perform certain functions and other parts that are in the mix for other reasons. I think of them as dirty drugs. The part that stops the seizures is the good part. The part that causes the side effects is the dirty part. You can keep asking questions of the specialists, but you probably won’t understand the answers. Do not get frustrated with them or yourself. Sometimes you just have to trust these folks that have spent years studying something that has just appeared on your radar.

Rose was in the hospital for about a week due to her kidney stones. I stayed with her most of the time, only going home to shower and do laundry. Days spent in the hospital are trying, but the nights are torture.
I had to sleep in a malfunctioning recliner beside Rose’s bed. It would remain stretched out if I kept my back straight and applied force against it. If I shifted the wrong way during the night, it shot back to the upright position, giving me quite a rude awakening.
The other issue that prevented a good night’s sleep was the nurse parade that came in at random times to check the IV machine. If Rose moved and pinched the IV line, an alarm would sound to summon a nurse.
None of these irritations compared with “Mary and her Damn Lamb.” Across the hall was a patient who was supposed to be confined to his, so the bed alarm in his room was turned on. Every time he got up, the bed alarm played the tune of the children’s nursery rhyme “Mary had a Little Lamb” to alert the nurses that the patient was being non-compliant.
Rose’s room was on the pediatric floor of the hospital. This story might make you smile, but there is a sinister twist to this tale.
While trapped in the hospital for days, I would sneak out of Rose’s room while she slept to see different scenery and search for snacks. During one of my silent forays down the hallway, I heard the nurses discussing this patient across the hall.
He was not a child. The hospital had no room for him in the psych ward. Until a space opened up for him upstairs, he was to wait in the room across the hall from my Rose.
So every time I would hear “Mary Had a Little Lamb” I would wake up and watch Rose’s door prepared to catapult myself from my dysfunctional recliner to protect my Rose from the psycho.
Sleepless Seizure Mama speaks to parents:
Staying in a hospital for long periods of time can send you to the edge of the “crazy cliff.” My husband and I learned to take turns for overnight stays. I packed my little blanket and sleep mask. It is almost impossible to get good sleep in a hospital. The nurse parade during the night is a necessary evil. Sometimes I would awaken to see a concerned nurse looking at me crying in my sleep, something I did not allow myself during the day.
There are far worse ways to be awakened in a hospital however, like when a “Code Blue” announcement is sounded. My heart would pound for minutes after these alarms, as I prayed with all my heart for the patient in crisis and the brave professionals rushing to try to save them.

On October 27th Rose started vomiting. It continued for hours despite applications of the anti-nausea gel to her forearm. I finally packed her up and headed to the pediatrician’s office. He did not seem as alarmed as I was. He asked what I thought should be the next course of action. I replied that the next time Rose vomited, we were going to the emergency room. I knew something was really wrong with her. My “mama gut” was screaming. This doctor had known us for years now. He knew Rose’s history and he knew I was not an alarmist. He decided to send her on to the hospital to be admitted.
We were quickly checked into a room. The nurses tried to start an IV. They could not get a needle in because Rose was so dehydrated. The IV supervisor was called to get one started. It was at this point that I realized that Rose’s face looked wrong. Her lips were too big and her eyes looked sunken. This is why I felt panicked. Her face was deflated due to dehydration.
The vomiting continued. They asked Rose her pain level on a scale of 1 – 10. She calmly replied 8. The nurses were startled by her response. She had not mentioned being in pain. She remained stoic through all the poking, prodding and x-rays. The suspected culprit was an intestinal blockage. To everyone’s surprise, two kidney stones were discovered instead. One was blocking a ureter. It needed to be removed immediately. A local urologist was called to perform the surgery on Halloween Eve.
When Rose heard that she was going to miss trick-or-treating, she broke down. This brave ten-year-old patient boo-hooed like a baby. The nurses felt so sorry for her that candy and gifts began to show up in her room. Folks at our church were alerted. A giant bag of assorted candy was collected from the Trick-or-Trunk event. She got more candy than ever.

Seizure Mama speaks to parents:

First, I would like to say that you must trust your “mama gut” even when you do not consciously know why you are alarmed. That instinct is like your hard drive. Even though the information is not on your “screen of consciousness” you still get a vibe of alarm. Although I was not medically trained to know the signs of dehydration, I recognized that something was physically wrong with Rose.

It was later determined that one of Rose’s anti-seizure medications had caused the stones.  That medication was discontinued.  She has had no more kidney stones in the sixteen years since this incident.

I would like to add that the following Halloween, Rose dressed up like a witch and delivered packs of candy to the pediatric floor of that hospital. The nurses were thrilled. They, of course, got to share in the spoils. Rose remembered how sad she was to miss last Halloween. She wanted to make sure the kids stuck in the hospital this Halloween did not feel forgotten. This is what the seeds of pain can do. They can grow into love and bloom with kindness.

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 were finally 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.

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.