Our family took a three-week trip across the country to the Grand Tetons and Yellowstone National Park. Our son was in high school and Rose was in middle school. It was the perfect time to take such a trip. Our children were mature enough to handle the long hours on the road. I will always remember things about this trip that shaped our future. It really was a defining time for our family. There were obstacles. We handled them as a family. We drove our truck and tent-camped most of the time. When we arrived at our first camping spot, Flagg Ranch, we got out of the truck to see the most vivid double rainbow I have ever seen. We thought we had lucked in to the perfect campsite. We had two tents, one for sleeping and the other for all our supplies. We did not enjoy a restful time here, however. First, it was hard to sleep due to a park ranger’s loud truck circling the campground all night on bear patrol. When a rain storm came during the second night, we realized that our prime site was a gully. Both tents filled up with water. We were forced to move camp in the dark during the rain. We spent most of the night in the laundry building drying our sleeping bags. Other campers doing late-night laundry let us use up the remaining time on their dryers. This was on my birthday. It was amazing. We were an invincible team. We moved around quite a bit during this three-week long trip. I kept hauling an especially heavy bag of Rose’s in and out of the truck. Finally, I asked her what was in there. “ My shoes” she replied. “ How many pairs of shoes did you bring?” I asked. “ seven” she said. “ Why on earth did you bring seven pairs of shoes?” I asked. Her response was “ You told me to.” While she was packing for the trip she asked how many pairs of shoes she should take, I replied “ several,” but Rose heard “ seven.” This was one of those times when we suspected that a hearing aid was in her future. Our family toured around Yellowstone,the Grand Tetons, the Badlands and Devil’s Tower. The only health issue Rose had for most of the trip was hiccups. The hiccups spells would last for long periods of time. It was a side effect of one of her medications. Epilepsy did not show up until we got to South Dakota. We camped at Custer State Park after visiting Mount Rushmore. It was a lovely place, but nowhere near a hospital, or anything else. Rose and her brother were riding bikes around the campground while my husband and I fixed supper. We saw our son speeding toward us alone and knew that Rose had just had a seizure. (Pause here. We are in South Dakota, near nothing, letting our daughter with epilepsy ride her bike. Were we crazy? Were we foolhardy, negligent, stupid? No. We were living our lives. Epilepsy is like a terrorist waiting to attack. You can’t hide from it. It will come when it comes. We refused to keep sitting around waiting for the next seizure. Been there, done that.) We jumped in the truck and drove to Rose. We hauled her and her bike back to camp. We waited for her to come to. We were concerned about broken bones. She was wearing a helmet, so probably no concussion. She had gravel in her knees. I was scared to do anything until she regained consciousness. When she came to, we assessed the damages. No broken bones. Then it was time to deal with those knees. This part of the story always gets Rose a little mad. We had to carefully pick gravel out of her knees and bandage them. It was a painful process. She was upset with us that we had not taken care of this task while she was unconscious.
Seizure Mama speaks to parents:
We could have stayed home and waited for the next seizure. We could have forbidden Rose to ride her bike. She could have sat around the campsite watching her brother whiz past. But this is our life. Our family needed adventure and joy. We were going to live our lives to the fullest despite our fears. In those three weeks of wonder, we had one seizure and a lot of hiccups. That could have happened at home, but instead we got to see a spectacular double rainbow, Old Faithful, Mount Rushmore,a grizzly bear, and thousands of bison. Get out there. Pack this damn epilepsy and go. But leave those seven pairs of shoes at home.
We went back to our favorite medical complex for a kidney stone recheck about a year after the initial stone was found. At that point, Rose had been off drug 6Z. She had spent months drinking lemonade made from fresh lemons. She had been through various tests for conditions that might have contributed to the stone issue. All tests were normal. The new drug 7Z was not as great as 6Z, but that is a different story. We expected the “all clear” from the urologist after this visit. Rose and I went back to a room for the ultrasound. Her dad stayed in the waiting area to read and nap. We knew this would take a while. Rose got comfortable on the bed as she was slathered with warm gel. Another spa treatment with a hefty price tag. The technician began rubbing her wand around Rose’s midsection. I watched the gray screen of the monitor. The young lady would rub Rose as she looked at the screen and click on the keypad to take pictures and measurements. Rub and click, rub and click. Pause. The technician excused herself to us. She returned with her supervisor. The two discussed things on the screen quietly. They asked Rose to roll to a different position. Rub and click. Rub and click. The first young lady left and brought a doctor back with her. There were quiet discussions in front of the screen. About this time Rose’s sleepy dad appeared in the room with us. Someone had gone out to the waiting room to get him. We knew something was coming. More stones? Really? Making all that lemonade for nothing? No, it was not a stone. A mass had been found on her ovary during the procedure. The bad news was, it was about the size of a tin can. The good news was it looked hollow and was probably harmless. This is when Rose’s dad and I looked at each other and laughed. Crazy right? The poor child’s parents are laughing like a joke had just been told. Surgery was scheduled for the coming weeks. Same hospital. We hoped it was a benign mass. We hoped that the surgery would not cause damage to the ovary. There would be a big scar. No matter. We were once again among other parents with sick children. The other children had conditions that were much more serious than a cyst. We felt blessed to be in a good place to get this taken care of. We would get through this. Rose’s dad and I took turns staying with Rose. We would see the familiar faces of other parents in the elevators and hallways. We lugged supplies and laundry in rolling baskets and colorful luggage. You could recognize other caregivers by their luggage and tiredness, sleep-deprived sentries silently going about their duties. Rose saw the surgeon again for a recheck before we could be released. She lay on the examining table as he poked at her incision site. There was some swelling. He opened a new pair of scissors and made a hole in the stitched line in Rose’s abdomen to let the wound drain as Rose watched with fascination. That is the kind of patient she was. Watching and learning. Patient and student all in one.
Seizure Mama speaks to parents:
You do not need to look far to find someone who has more problems than you do. Every time we went into a hospital, we left feeling lucky. Remember this if you feel the need to have a “pity party” with a stranger while in a hospital. As I was loading Rose’s clothes and games out of the hospital, I rode down in the elevator from the pediatric floor with another mother. She was obviously moving her child out, also. We had passed each other numerous times in the previous days. I looked at her luggage and exclaimed, “Hooray, we both get to go home.” “We are headed to hospice.” was her reply.
(Re-posting of Chapter 30 of Seizure Mama and Rose)
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 later would learn 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.
I was forced out into the world yesterday. Rose is home on spring break.
Before I even left the house, my wallet was emptied for a cut and color.
Rose came home looking like a million bucks for my money. (I have not had a hair cut in two years.)
Our first stop was supposed to be at an ATM to replenish my wallet. I discovered my bank of forty years had closed yet another branch, so I had to Google where to find my money.
Next, I sat in the car for over an hour during her doctor’s appointment. I scrounged for reading material in the pockets behind the seats. This is not my first stay-in-the-car “Rose Rodeo.” I have stashes of supplies.
To my dismay, I discovered a steno pad that was used to document the days that fate started killing my in-laws this very week last year. I wondered why it was in MY car? Then why it took me a year to find it?( In my defense, I have steno pads everywhere, because I write all the time. )
I read through these records in horror and counted the misspelled words.
I then studied an atlas and memorized all the countries bordering poor little Ukraine.( Poland, Slovakia, Hungary, Romania, Moldova, Belarus and, of course, Russia.
After finally finding my money in a lovely new BofA in the rich section of town, we stumbled upon a sweet little Mexican restaurant. Something beeped in the bathroom, but my bladder was too full to care if it was a camera.
I was stopped in my tracks by a portrait of a familiar face on the wall over the bar. This is when it finally occurred to me that the universe was talking and I wasn’t listening. ( Frida Kahlo. I remembered many details, but not her name.)
Rose and I had a delicious lunch. I ate only half of mine, so I could save the other half for my husband’s supper. (I had a sense I would not be cooking later.)
Something kept clanging around in the back of my car as we drove. I am distracted by noises, so we investigated at our next stop. It was the metal grave markers of my in-laws that we removed when we went to look at the new headstone over the weekend.
We then ventured to our favorite strip mall. I went in my first store, but my hip quit working. I made a slow semi-circle around the front of the store, looking longingly at the lovely bottles in the back left corner. I knew I could not walk back there. If I did, I couldn’t carry my cargo to the counter. I hobbled back to my car empty handed.
I pulled out the atlas again to study Africa. I put my finger on Rwanda in memory of Dr. Paul Farmer, my hero who died recently.
After almost an hour, I saw a stranger walking towards my car wearing Rose’s clothes. It was Rose but the new hair and extra pounds threw me off.
I continued to camp in my car. I texted weather reports to Rose periodically. I finally became concerned and called her phone twice…no answer.
I was trying not to panic by this point. She had just had a procedure done. But I had parked between two exits, so I knew if I entered through one, there was a 100% chance she would exit through the other. It was pouring rain by this time. (No need to get wet due to worry.)
After an hour and a half of people watching, I got an “I’m coming.” I texted which exit Rose should use and pulled her chariot to the wet curb.
I do not remember the drive home, only the relief of getting my hip and bladder into the house. Bathroom, bed, blanket over head.
What was the universe saying to me? I need to lose weight? I need to drink less? I am haunted? We are moving to Mexico? I am too old to be Rose’s mother?
I have no idea. But I am staying home on this quiet, rainy day. I will try to figure it out while Rose sleeps in.
( Re-posted Chapter 30 from Seizure Mama and Rose by Flower Roberts )
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 bed, 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.
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.
(Then and Now for Chapter 28: The Epilepsy Monitoring Unit)
Going to an Epilepsy Monitoring Unit will get more clues about what is happening in a seizing brain. We probably should have gone sooner, but the chaos with her first neurologist kept us undecided. I think we needed to feel confident about the doctor in charge before moving to this step. What we feared in the beginning was a source of hope at this stage in Rose’s struggles.
We had basically exhausted most drug options by this point. It was time to be surrounded by a trained team of professionals. We were hoping to find the source of seizures during Phase I of EMU. There were other ways to find out what was happening besides just the electrode leads glued to her skull. Rose also had many scans.
Our first experience with Phase I did not give us the information we needed, but guided us toward other tests. At least the EMU clues ruled out many possible causes which had kept me up at night, such as tumors or lesions.
Any patient who has failed many medicines needs this step. Even if you do not get definite causes, possible sources of seizures can be ruled out and better options for medications or treatments may be uncovered. You need the clues from EMU.
An EMU stay is time-consuming and expensive, but so are trips to the ER with broken bones. Your insurance should be encouraged to cover this as a preventative measure.You may need to be a pushy mama bear.
Seizure Mama and Rose 