Story #12: Emergency Room Again

There was quite a crowd in Rose’s room at the ER when we arrived. We learned one of our good friends from the school had ridden with her in the ambulance. This was a relief to me because I did not want Rose traumatized by waking up in an ambulance among strangers. Her teacher, Ms. S soon arrived with her usual dramatic flourish. She had us laughing within minutes. Ms. S admonished her little “Turkey Toes” for leaving class early. Another friend who happened to be volunteering as a Rainbow Reader in the classroom next to Rose’s came to check on us. I stepped out in the hallway to cry with her. She knew how hard this had been on our family in the past and understood what this meant to our future.
I took notes about everything that was done on the backs of the forms and envelope from my art show. My notes were a mess by the end, crumpled and tear stained,but I was thankful that we had that paper. Things happened so fast and needed to be written down. When Rose’s dad or I left to go to the restroom, the other took over the note taking. We learned to do this in the beginning. That way her parents and caregivers all stayed on the same page in terms of her treatment.
A male nurse blatantly asked me why this seizure was so upsetting to me. I started to explain that we had hoped that Rose had outgrown her childhood epilepsy. He flatly stated that epilepsy is not something that can be outgrown. A kick while you are down is never a good thing. I will always remember his name and his face.
I know this nurse was puzzled by my extreme sadness when Rose’s medical chart clearly stated she had epilepsy. This is the same hospital where she went had gone status after her tonsillectomy three years earlier. The details were all right there for her doctors and nurses to read. I am sure I was expected to be a seasoned seizure mama by this point. I am not sure there is such a thing.

Seizure Mama speaks to parents:

What was not in Rose’s charts was how much we wanted to believe epilepsy was behind us, the seizures, the drugs, the side effects, and the fear. That’s not something medical workers can read in charts. They do not see the full picture. The quick parade of patients does not allow them time for reflective thinking. I know that those handling constant emergency situations have to think quickly on their feet.
It reminds me of my years as a teacher, when I had so many children I didn’t know what to do. I was never enough at school. Then I would come home feeling too exhausted and stressed to be a wife and a mother. I respect the workers on the front lines at the hospital. But they, like teachers, cannot know all the details.
That said, no one can expect to be handled with kid gloves in the Emergency Room. We have been there many times. The medical workers gather data, assess the current situation and decide on an immediate treatment. This is “life in the fast lane.” We parents must pay attention, write everything down, and be nicely but firmly proactive.

Story#11: Epilepsy Again

Rose made it three years without a seizure. An EEG(electroencephalogram)was done. It was normal. She was weaned off of drug 3S during the summer. She grew taller, quicker, and smarter. We felt epilepsy was behind us. We believed the seizures were due to all those ear infections and fevers. Rose was growing and thriving. We were all relieved.
Rose started third grade without much worry. Everyone involved with her care knew her history. As a precaution, Rose’s medical information was shared with her new teacher. This young woman was very funny and enthusiastic. Rose’s classroom was near the office. Rose was happy.
We were all getting into our own grooves. Our lingering fear had loosened its hold on our family. I restarted my garden art business and began scheduling shows. My son was now in middle school leaving Rose at the elementary school without her big brother. No worries.
In mid- November, I had a two-day art show in a neighboring town about forty-five minutes from Rose’s school. Anytime I was away from Rose I wore a beeper and carried a bag phone. I can confidently say that her father and I, both at once, had not been this far from Rose since her diagnosis five years ago.
The week of the show, Rose got another ear infection. She had hoped to go to her first sleepover at a friend’s house just across the road from our home. I was preparing for the show. Everyone was busy, too busy.
We kept Rose out of school on Thursday to recuperate and rest. She seemed to feel better. Friday morning was frantic. I gave Rose some over-the-counter NSAIDs(non-steroidal anti-inflammatory drug) and her antibiotics. I also sprayed her nose with a sinus spray as her ear specialist had recommended. We thought we had covered all the bases, but my gut was still screaming. This was too much at once; the two-day show, the sleepover and especially being far from Rose.
My husband and I delivered our two children to their separate schools. Then we headed to the town of the art show in separate vehicles. He was to help me unload my heavy pieces into my booth and immediately return home. As we were unloading my garden art, my beeper went off. I looked at the tiny screen. It displayed the number of Rose’s school with a 911 at the end. This was our agreed-upon signal to drop everything and run. I am so thankful we had this signal in place. I explained to the artists in the booth beside me that we had a medical emergency. They assured me that they would pile my art under the table and cover it. We jumped into our truck and my husband drove as I called the school.
Our friend in the office answered the phone. He said “It’s Rose. Get here quick.” I explained that we were headed up the interstate, but were forty minutes away. Our hazard lights were on and I was waving a white sheet of paper in the windshield. Still some people refused to pull over into the right lane. At one point we passed in the grass and lost a hubcap. The beeper kept going off. The calls kept coming: “What hospital do we take her to?” “How far away are you now?”

My one question was ”Is she still breathing?”

Seizure Mama speaks to parents:

Let’s play a different version of the terrible game we parents play, “Second Guess Yourself.” Only this time let’s change it from ‘What if I had…’ to “What if I had NOT…?”

Examining the events described above, what if I had NOT…

1. …let Rose’s teacher know that she had epilepsy.
2. …set up an alert system including beeper and phone. (This occurred before cell phones.)
3. …left an emergency bag in the office with emergency medications in it?

If I had chosen to hide Rose’s seizures to avoid the stigma, would she still be here?

Story #9: Mama Goes to Kindergarten

Rose and I started kindergarten together. The first two weeks were half days, so the teachers could make home visits in the afternoons. Our plan was for me to stay with Rose at school until her teachers came to our house for the home visit. They knew this plan and could have scheduled our home visit earlier. Rose and I were both known at the elementary school because Rose’s older brother was there. I had been involved in the Parent Teacher Association and volunteered often.
I will always remember those two weeks of constant action. Rose’s teacher and assistant were both amazingly patient and pleasant women. There was constant activity every minute of the day, even during nap time. I found it exhausting, but very entertaining. I felt really good about Rose being with these two women. I knew, despite their many responsibilities, they would take care of Rose as best they could.
The day of the home visit arrived. Rose served her teachers brownies and lemonade. We talked briefly about funny events that had occurred during the first weeks of kindergarten. Rose was happy to have her new teachers in her home.
They both sat on the couch as I demonstrated how to handle a seizure using Rose’s large stuffed cow, Lovey. I described how a seizure might start and then placed Lovey on her side. I opened Rose’s big red seizure bag that was to stay in the principal’s office. I put a rolled towel from inside it under Lovey’s head and pulled out Rose’s emergency medication and pretended to administer it to the cow.
After I finished the demonstration, I looked into the teachers’ faces and waited. Would they handle this for us? Could they do this? Were they willing to take this on? Most importantly, was I going to have to spend the year in kindergarten?
They looked at each other. Then looked back at us. Ms.J said, “We can handle this.” I couldn’t believe what I heard. Just because public school is obligated to make accommodations does not mean they gladly do it. Ms.S said they both knew how to handle seizures. One had a husband who had epilepsy, the other had seizures herself and was taking the same medication as Rose was. The principal knew all this. That’s why he put Rose in their classroom. I felt so blessed to have these two women be part of Rose’s team. What a relief and a gift. I will always be grateful to these two wonderful women.

Seizure Mama speaks to parents:

A “seizure bag” went wherever Rose went. In it were several towels, a change of clothes, wipes, paper towels, and a bottle of water. Her emergency medications came in packs of two syringes and were somewhat expensive. One was kept in the big red bag at school, the other one in my purse. These emergency drug syringes could not be left in the car. The drug could not get too hot or too cold, so the syringe stayed with me. This meant that I carried an over-sized purse for years. I rolled the sealed syringe in a bandanna scarf to protect it inside my cluttered purse and used the bandanna to cover Rose during a seizure. This is how you live with epilepsy on the go.

Story #7: Second Drug Down

Rose had many sore throats and ear infections from the time she was a baby. To help with these issues, she had a tonsillectomy and a tube placed in her left eardrum for drainage in December. She was five years old and in her second year of prekindergarten preschool. The surgery went as planned. We went home feeling like we were eliminating several health issues. We were relieved to have these two surgeries behind us.
Around 4:00 AM the night after the outpatient surgery Rose started vomiting. We hoped this was due to the post-surgery pain medications. Her vomit consisted of applesauce and white flecks. We wondered if the white flecks were pieces of drug 2D. The vomiting continued. We tried to intervene with a gel applied to her arm. The anti-nausea gel was our safety net for nausea. We kept syringes of it in the refrigerator.
The first seizure occurred about 10:00 AM. The first one was short. The one that followed was a bit longer. Then there were two episodes of stiffening of her arms. Any series of seizures is scary, but Rose’s body was under the stress of post-surgery and the after-effects of anesthesia. We knew we needed help.
We went to the Emergency Room at our local hospital. We made it clear that Rose’s neurologist must be contacted before any drugs were given in her IV. A large dose of drug 2D was administered without consulting Dr. T. When a blood sample was drawn later, the levels of drug 2D was really high, too high. No other drugs could be given.
Rose had four more seizures while at this high level of 2D. She was seizing while unconscious. Her emergency, sub-lingual pills could not be used due to her high levels of 2D. We watched helplessly, realizing drug 2D was not effective in preventing Rose’s seizures.
Rose was moved to a room on the pediatrics floor. I was comforted that her bed was surrounded by caring and attentive professionals. I was not comforted that they could barely hide their panic. I watched as they lovingly tried to help my unconscious little girl as if she were their own.
They were hovering around Rose’s bed, totally focused on her every move when a nursing assistant rolled some scales in to the room to attempt to get Rose’s weight. The group heard the squeaky wheels of the scales enter her room. They all turned from the bed to see the scales. In unison they belted out, “Not now.” It was such a ridiculous event that I laughed out loud.
Seizure Mama speaks to parents.

When you take your child to a hospital, you are no longer in charge. They have their rules and protocols that they must follow. You must be assertive, yet patient. I am not good at either of these things, but I have had to practice. You and your child will have to live with treatments received in the Emergency Room long after the doctors and nurses have moved on to the next emergency. Keep all your medication information and doctor contacts with you at all times. These medical professionals need all the information they can get, fast, so they can make the right decisions quickly.

Story #4: First Drug Down

Drug “1T” was our first  drug. Now we knew that the cause of the seizures was always in Rose’s brain, not just showing up with fevers. It was a resident, not a guest. We were in a constant state of vigilance. I do not say this lightly. It would be a condition for us that still continued for decades, emergency-ready for twenty-four/seven. Rose nicknamed herself 24/7 because of this. We all tried to play this down, but it was what it was.
With the drug 1T, Rose became more active and hungry. She seemed hyper-emotional compared to her prior happy-go-lucky self. Was this change due to the new drug or an after-effect of the seizure? Her care-free childhood had transformed into a series of tests and medications and worried faces. There was a period of weeks after that long seizure in May that seemed like epilepsy was the center of our universe.
Our family planned a camping trip for mid-June. We hauled the boat and tent to a State Park for a week of fun. Our site was along the shores of a crystal-clear lake. Some friends with a daughter Rose’s age came to visit and spend a day with us out in our pontoon boat. Rose had a lot of fun on this trip. She made her own little play house inside a folded lawn chair. What an adventure.
Her dad and I had discussed what we would do if a seizure occurred during our stay here. We knew where the hospital was. We located the park office. There were officials around who could help, if needed. We made our plans in case of emergency. We had the bag phone. We were cautious, but brave.
During the night on Wednesday, I was awakened by unusual noises and motion beside me in the dark tent. I quickly switched on my flashlight. Rose was seizing. Her face and neck were covered in drool. Her skin looked splotchy. The seizure was short.
I lay back down on my sleeping bag, keeping a hand on Rose. I lay there thinking about what a crazy stupid mother I must be to have my baby here in the middle of nowhere, in a locked campground, in a tent, in the dark. This event was the beginning of one of my paranoid hopes of buying a house across the street from a hospital. That way we would always have medical help close-by.
When Rose awoke the next morning, she was scratching her neck. I pulled up her pajama top. A prickly red rash covered her torso and upper arms. Her lips were swollen. The bag phone was used to call her pediatrician. His diagnosis was that Rose had experienced an allergic reaction to the new drug, 1T.
Camp was broken. The tent was bagged up. Supplies were tossed haphazardly into the pontoon boat and the back of the truck. We headed back to civilization and supposed safety.
We stopped by the doctor’s office then pharmacy on the way home. This drug was not the right one. There were more to choose from. Lots more. Surely the next one would do the trick and stop the seizures without side effects. Seizures had been around for centuries. Surely there was an effective drug to fix this.

Seizure Mama speaks to parents:

A drug is a drug. It is a chemical compound, not a magic wand. It does what it does with the other chemicals in the body. Drugs are not dynamic substances. They work or they don’t. If a drug is not working, move on.
After trying several different drugs, we began to feel obligated to give each new drug more time. Determined to give each more chances than it probably deserved. We were afraid to damn each one for fear there was not a new drug waiting in the wings. Learn their names. Know their half-lives. Keep records of their effects and side-effects. When the evidence shows that the drug is ineffective, move to another or a new combination. Do not linger with a drug failure.
My charts of drugs and dosages, seizures and side-effects gave us confidence to move forward in terms of medications and treatments. It also eliminated “re-inventing the wheel” when we had to change doctors or go to a new clinic for tests.

Halloween in the Hospital

Story # 25 : Halloween in the Hospital

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 told him that I knew something was really wrong with her. I did not know how I knew, but 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 in to 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 spotted. 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 Now

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. Even though I was not trained enough to know the signs of dehydration, I still 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 Halloween. She wanted to make sure that the kids stuck in the hospital did not feel left out. This is what the seeds of pain can do. They can grow into love and bloom with kindness. Just like my Rose.

Toxic with a Timer

Story # 22: Toxic with a Timer

Rose’s latest drug combination became a recipe for disaster. She was dizzy and nauseated. She was limp and barely moved or responded. She was silent. She was being poisoned.
We put her on the couch, so that we could all keep an eye on her. She was on three drugs. One was an extended release form. One drug must have amplified the affects of the other two. Her nausea and vomiting turned to dry heaves and bile. Seizures were clustering. We knew she was in danger.
We called the on-call neurologist at about 11PM. The conversation was difficult due to the doctor’s foreign accent. 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. Then we were to take her to the Emergency Room if she had a seizure after that. Was that really what the doctor said? Two more seizures and then the ER? Really?
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 that she woke up. She was fading before our eyes. I called the doctor’s office to report her condition. I broke down as I explained that we felt she was being poisoned by these three anti-convulsant drugs and still seizing.
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 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 NOW

We kept gel in the refrigerator to put on Rose’s arm for nausea. There were several times when her vomiting lead to seizures because she had thrown up her medication. We always sifted through her vomit if it occurred soon after a dose. 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 that missing a dose. You need to know.
This particular situation was the exact opposite. Rose was sick and seizing before 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 do go to the Emergency Room, drawing blood 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.

 

SEIZUREMAMA

The Seizure Cycle

The drug roulette regiment made everything worse. Rose was not Rose before a seizure or 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 Walmart shopping for a helmet, at family reunions 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. Every party was BYOC (bring your own chair). 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 is too dangerous. Should we go? No. By this point, we basically 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. She would look handicapped. She would feel handicapped. Yes, but she would be safe.
We walked everywhere attached to 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.’ When no one was in the room with Rose, the person in charge of her would whistle two notes and she would echo the two notes back. We whistled about every three minutes. It got to be so much of a habit that I would catch myself whistling notes when she was not with me. She slept with me during these terrible months. Sometimes she would whistle in her sleep. We whistled so we would not have to keep calling her name. 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, she would rush to find her. Most of the time she was too busy to answer, but sometimes she was unconscious. It was these times I would always feel guilty about leaving her alone. Negligent for three minutes.
Take a chair everywhere, echo whistling and stair pairs. This is how we kept her safe as the seizures took over our lives.

The Painful Appointment

This is story #19 in the book.

We had felt good about this neurologist in the beginning. This doctor was  cordial, observant and thoughtful. We had previously left all our appointments with several written plans of action in case the first choice did not bring the results that we hoped for. If plan ‘A’ did not work , then we also had plans ‘B’ and ‘C’, if needed.  But 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. Rose 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 neurology nurses. The doctor mentioned wanting another EEG(electroencephalogram) and the possibility of a 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 regiment and headed for surgery. Our instructions when we left the office were to stay on drugs 3S and 4L. Stay on these two drugs that do not work? 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 these same drugs and dosages.

We left to office 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? Absolutely not!
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 had their appointments before the lunch break. It was interesting watching all the other struggling families while we waited. One father was irate and loud about a mistake that was made.
Finally, we got to speak with the doctor again. There was a new plan when we left. I had the doctor write down. I still have the paper. Rose was to go down on drug 4L, off of drug 3S, re-add drug 5K and add on a new drug 6Z. Was this a plan or a punishment?  This was like playing a game of random roulette with strong drugs on a young child. Was this new plan better than no change? Hang on. It gets worse from here.

Peeling Off A Drug

Every SEIZURE MAMA post I have written so far has been about the past.

This one, however, is occurring in “real time.”

I wanted to share a tiny part of our twenty-four-year journey with you,

so you could get a sense of our anticipation and anxiousness.

(I DO NOT WANT FEEDBACK ON THIS. You are an observer only.)

 

Rose has been on this particular drug for twenty-one years now.

It has been her friend and her enemy.

When all other combinations failed, she went back up on this one.

It helped with the seizures, but there were costs.

Everything slowed.  It was sort of like changing water to molasses.

Why now?  She is working and driving.

Her grades were good for her first semester away from home EVER.

Good is the enemy of great.  Things are good, but the struggles are still here.

Think of it as always having to walk uphill…never on level ground…never downhill.

So STARTING TOMORROW, we will be peeling off this friend/foe drug.

It will not be coming back for various reasons.

If there is a seizure, one of her other drugs will be increased.

It is a tiny dose, not even in therapeutic range.

But it has been her security blanket medication.

Rose’s brain has had this molecule for twenty-one years of her life.

She is scared and excited.  She needs this.

Damn she is brave!

SEIZURE MAMA