I love the fresh hope that comes with a new specialist. It feels like a pro has been added to a team of amateurs. Expectations are raised to new heights.
We really did gain confidence in Rose’s treatment temporarily. Dr. T had expertise and experience. We felt we were in good hands. We were for a while.
Dr. T was very focused and proactive at first. Then her partner left. She had all the patients of the practice. I do not blame her for being scattered. She seemed distracted and even testy when we questioned what she was saying. My notes from our appointments confirmed the randomness of her recommendations.This ship was sinking.
It is really scary to switch specialist. A second opinion must be requested. A letter and records must be sent to an unknown doctor. It is like starting over.
It takes bravery, or at least desperation, to move to a new neurologist. There is that word again!
The uncertainty that comes with seizures requires constant bravery from everyone. Fear has to be met head-on. Hide it, swallow it, curse it, whatever it takes. Just do not let fear keep you with an ineffective doctor or ineffective drug. Listen to your gut. Your child’s future depends on your making good decisions. Based on facts NOT fears.
Next up: Chapter 8: Gilligan at the Lab on Saturday, June 19, 2021
Rose’s first visit to a neurologist was months after her first officially epileptic seizure. During the previous months she had tried one drug that failed and was on a second that was prescribed by her pediatrician. Many tests had been run including an electroencephalogram(EEG). She had experienced a second big seizure. We were anxious to learn everything we could from this appointment. Dr. T’s diagnosis was complex partial epilepsy. This meant that Rose’s seizures started in a certain place in her brain and then generalized to a full seizure know as grand mal or tonic clonic. This made sense to us because her febrile seizures started with chin twitching. Rose referred to these as a “tornado in her mouth.” She could not speak during these episodes, but she could point to her mouth. That little aura served as a warning that was so helpful in those early days. The “tornado” aura soon disappeared, so that we were all surprised by Rose falling to the floor. Since her seizures were lengthy, Dr.T advised us to get CPR training. She recommended that we call 911 for any seizure lasting more than five minutes. We knew that longer seizures meant danger to her brain and her life. Her dad, brother and I vigilantly watched her, but since Rose was a very active little girl, this was not easy. Our family started tag-teaming “Rose watch” duty. She always stayed within earshot of the person responsible for her.We made sure someone was always nearby and alert. The neurologist evaluated Rose physically and mentally with simple tests. She was extremely bright and was evaluated as entry-level first grade, although she was just entering her last year of preschool. Dr.T instructed us to watch for developmental backsliding and side effects involving Rose’s gums. After our experience with her first drug 1T we knew that such changes were plausible. We hoped that this second drug would do its job without the side effects. The plan was to stay on drug 2D for three years and then slowly wean down and off if no more seizures occurred. We were glad to hear that these childhood seizures might eventually diminish. Our new goal was three seizure-free years. We jumped through all the seizure-prevention hoops. Rose took all medications on time. She was encouraged to take afternoon naps even if it was just quiet time in her bed. We diligently watched for fevers and treated each immediately with a red or pink over-the-counter non-steroidal anti-inflammatory drug(NSAID).
Seizure Mama speaks to parents:
The term SUDEP(Sudden Unexplained Death from Epilepsy) was not coined at this point. We knew that during Rose’s first long seizure her heart may have stopped. We knew that the longer and stronger the seizures were, the more dangerous and life-threatening they were. This was always in the back of our minds. It is still in the back of our minds. Rose is twenty-six years old and away at college, but that fear still remains here. You must go on with your life despite this threat. Uncertainty is present in every life; you just got yourself a big ol’ dose of it to hide somewhere.
THEN and NOW will be posted on Wednesday, June 16, 2021.
Mama had to fight through a whole lot of fear to get to the brave side of the continuum. The fear is always there. The bravery has to be sought for and fought for. This was the hard part for me, but not for Rose.
Bravery is in her blood. Sometimes she reminds me of Lieutenant Dan in the movie Forrest Gump. She is perched atop the mast of her boat yelling at the storms and shaking her fist. That is her super power.
Where did this come from? Experience. Rose knows her storms are inevitable, so instead of going below to cower, she climbs her mast and dares it to destroy her. No where is safe. Might as well give epilepsy the finger.
Her bravery has been a surprise since she was small. Doctors expected to drug her for certain procedures. “No need.” I told them. She sat quietly watching or lay in the tunnels with her eyes on me as machines examined her insides. Her bravery was a blessing. It forced me be brave or at least pretend to be brave.
Reposting of Chapter 7: The First Neurologist will be on Saturday, June 12.
Rose had seizures everywhere. On these many occasions, I plastered a smile on my face and looked folks in the eye as they glanced down and walked by. What’s so unusual about a grown woman sitting on the floor/ground beside an unconscious little girl? Rose had a particularly dramatic series in an undisclosed, public location. As I was sitting on the floor in a hallway, a woman with healthy children walked by, patted me on the shoulder and said “Be brave” and walked away. I am on the floor. My child is unconscious, again. Be brave? Do you tell a person with cancer to be brave? Do you pat the shoulder of someone being wheeled in to open-heart surgery and whisper “Be brave.” to the patient? What choice do we have? Seizures disrupted ballgames, picnics, award ceremonies, bible school, birthday parties and dinners in restaurants. I am tired of being brave. How about sitting on the floor with me? Wait with me down here on the floor. Anchored to this spot until it’s over. Until Rose comes back to me. Stay and help us up.If you really care, don’t walk away leaving us to be brave down here alone and afraid. Seizure Mama Speaks to parents: Seizures may show up wherever you go. Please do not stay at home wondering and waiting. Other people cannot understand what you are going through if you do not tell them. Most folks truly want to help, but do not know what to say or do. Do not waste your emotional energy getting mad at others because of this. I do not know what to say to my grieving friends. I am always afraid of saying the wrong thing. But what does my silence say? Be brave!
Then and Now will be posted on Wednesday: June 9 2021
This story always brings back a lot of emotions. I am STILL tired of being brave.
Finding the right medication or combination of medications takes a lot of experimentation. We experimented for over twenty years. The drug that works for Rose had not been invented yet when we started.
You must be your child’s data collector. The doctor’s may keep records of the drug dosages, but you see the effects of those drugs. This is too important to leave to memory alone. Keep good records of mood changes, appetite changes, sleep issues and learning issues, as well as side effects and seizures.
This first chart is titration instructions given by her neurologist. This was helpful in filling Rose’s pill organizer. I could mark each day off as I filled the boxes.
This second photo is a chart we made of all the dosages tried and the results of each combination. As you can see, there were many changes. The side effects and seizures continued no matter the levels. This chart helped convince the doctor that this was not the drug for Rose. Keeping thorough records will prevent retrying combinations, especially if you switch neurologists at some point.
The last chart is a ‘Year on a Page’ that has all medical events for that time period. One of these is at the front of each year’s section in a series of notebooks we have on Rose’s treatments. I can glance at this page and then look through that section to locate specific events as needed.
PLEASE keep all your records together. You can sort them when the struggles diminish, but at least they will all be where you can find them when you need them. We kept everything in a cluttered file drawer. It is still a mess, but everything is in there…somewhere.
I am so glad we did this. I firmly believe our records helped get Rose to the right drugs. Only you can see the whole picture; medication dosages, side effects and seizures. Keep track of it all. It will make a difference.
Seized on an Island will be posted on Saturday, May 29, 2021
Rose’s first seizure medication was a chewable tablet we will call 1T. Now we knew that the cause of the seizures was always in her brain, not just showing up with fevers. The enemy was a resident, not a visitor. Our family was in a constant state of vigilance. I do not say this lightly. Our vigilance continued for decades. We were emergency-ready twenty-four/seven. Rose nicknamed herself 24/7 because of this. We all tried to play this down, but it was what it was. Epilepsy was the new center of our universe, but we tried to carry on as before. 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 big seizure? Her carefree childhood was transformed into a series of tests and medications and worried faces. 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 campsite was along the shore of a crystal-clear lake. Some friends with a daughter Rose’s age came to visit and spend a day with us out on the water. Rose had a lot of fun on this trip. She made her own little playhouse 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 in her sleep. Her face and neck were covered in drool. Her skin looked splotchy. The seizure was short. I laid 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 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 safety. We stopped by the doctor’s office and pharmacy on the way home. Drug 1T was not the right drug. 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, and sometimes 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 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.
THEN and NOW will be posted on Wednesday, May 26 2021
Seizure number thirteen was different. Rose was four years and three months old. Her first febrile seizure had occurred when she was eighteen months old. All her seizures thus far had been accompanied with illness and fever. This one was different. There was no fever. There was no illness. Rose was eating a brownie while sitting at her place at the table. Her eight-year- old brother commented that her mouth was too full. I looked over to see Rose holding a napkin in front of her face. I pulled it down to see chocolate drool leaking from the side of her mouth. Her chin was quivering. I leaned Rose over to the side to remove the chewed up brownie from her mouth. By now her eyes were blinking. I carried her to the nearby couch and placed her on her side. She tried to sit back up and pointed to the bathroom. I carried her there thinking she might need to vomit. Her arms went out stiff with her hands bent down at the wrists. I instead of entering the bathroom, I turned and carried her to my bedroom. The room with the phone. This was not the usual seizure. I dialed her pediatrician’s number and got his partner who was on call. I described what was happening to Rose. By this time her knees were bent up and her lips were blue. The doctor said if the seizure kept progressing, she may stop breathing. Her torso was now tense and writhing. She was in a twisting knot and turning blue. When the doctor instructed me to call an ambulance.I remember responding, “They can’t find us.” His emphatic reply was, “Get her to a hospital.” I hung up the phone and picked up my blue, baby girl. I carried her up the steps to the carport. As I strapped her into her seat, she vomited explosively. Then she slumped over and became still. I thought she had aspirated vomit and couldn’t breathe. I unbuckled her seatbelt and dragged her limp body across my thighs and beat on her back. Nothing happened. We had a bag phone back then. I got it out, unzipped it and instructed her brother to hold it as high as possible to get better reception. I dialed 911. What was my emergency? Where was I? How old was the patient? There were too many questions. I had to describe where our driveway was because there was no street sign. I had to tell how to open our locked gate to get into the driveway. In the country, out in the woods, no address, no neighbors. I was talking in words, but my mind was praying, “Give her back. Give her back.” Finally, the 911 operator began telling me how to help Rose. She was still and blue. “Put her on the floor of the van,” the dispatcher said. “Lay her flat on her back,” he instructed. “Start CPR,” he ordered. As I was getting ready to follow more instructions, Rose took a deep breath. I was relieved to see the blue in her face fading. Now my prayer was, “Let her be whole.” I finally took my eyes off her to notice it was raining. I looked at her brother standing as tall as he possibly could, holding the heavy bag phone over his head and shaking. Then I heard a car approaching. There had been no siren. It was a friend from church who was an EMT First Responder. As I started babbling about what had happened he calmly said,”Go change your clothes. I’ll watch her.” I noticed that I was covered in vomit. I was so relieved to have some help. I rushed back into the house to change my clothes and returned just as the ambulance and Rose’s father arrived.
Seizure Mama speaks to parents:
This event was an actualization of many recurring nightmares.
An emergency alone. No one to help me in my isolated location.
One of my children dying in my arms. My not knowing how to save my own baby.
Calling 911 and having no one answer. Or the answerer did not understand what I needed, where I was, etc.
Yes, this event was a cluster of calamities from my darkest dreams. I will never forget that helpless and hopeless feeling.
Yet I also remember my great relief when I saw Rose’s big breath,the familiar face of a friend coming to the rescue, and my pure relief and gratitude when I was no longer alone.
I would like to add two points to this topic. The first is that we later discovered that red dye #40 was a trigger for Rose’s seizures. We looked back at all the times we tried to prevent febrile seizures by using red, orange, purple and pink NSAIDs(Non-steroidal anti-inflammatory drugs).
There was no way we could backtrack in our records to see if there was a relationship here. There was however, a way to check when red antibiotics were used to see if febrile seizures resulted. I was relieved to find no correlation between the red dye in her liquid antibiotics and the occurrence of febrile seizures. We hope that this was also true of her colorful over-the-counter treatments for fevers.
My second point is that I eventually did research into febrile seizures and read that repeated febrile seizures should be treated like epilepsy. I drove a note, complete with references, to her pediatrician’s office. I did not follow up on this. He may never have gotten the note.
Neither the note nor a reference to it was included in Rose’s records that were eventually sent to a neurologist. I won’t kick myself for this either. If her doctor had put her on anticonvulsant drugs sooner, she would not have had those early years of unimpeded learning. Those first years are very important.
Rose had many ear infections that were usually accompanied by fevers. Unfortunately, these fevers sometimes caused more febrile(with fever)seizures. We were vigilant about taking her temperature anytime she was sick. If her temperature was elevated, we gave her a children’s liquid form of an NSAID(non-steroidal anti-inflammatory drugs). We tried diligently to prevent her fevers from getting high enough to possibly cause a seizure. We attributed her problem to a faulty thermostat. No fevers, would mean no seizures… we thought. Over the next three years after her initial seizure in the pediatrician’s office, Rose had twelve more febrile seizures. These were always scary. It seemed as though we just couldn’t prevent them even though we tried to intervene with over-the-counter medications. We began to suspect that there was another cause of these events than just fevers. I began wondering if these seizures originated from a source that was always present, not just something related to or caused by fever and illness. Was there something in her brain causing these? Maybe a lesion,or tumor, or chemical imbalance? When would this end? All children get sick, but most don’t have seizures accompanying illnesses. I began to feel that the cause was lurking somewhere in Rose, waiting until she was weakened. I suspected that this was no visitor that showed up with illnesses and fevers; this was a resident. I constantly watched for flushed skin and chin twitches. I did some research. I read all about febrile seizures. No one mentioned the word epilepsy. It crossed my mind, but not my lips. Not my child. It was these ear infections. If we could get them under control, things would be fine. An Ear,Nose and Throat- specialist, that’s what we needed. Get some tubes in those ears so they could drain, the infections would clear, the fevers would stop. Voila!
Seizure Mama speaks to parents:
Later on there were some suspicious incidents that did not involve fevers. Rose referred to them as “tornadoes in her mouth.” I did not know anything about partial seizures. I had never researched epilepsy before. I did not want it to be epilepsy, so I ignored some signs. That’s called denial. Would my being more proactive have made any difference? No one can know. I did the best I could with what I knew at the time. When there were undeniable signs of something more, I jumped into action. When the doctor’s diagnosis was febrile seizures, nothing countered that. I am not one to borrow trouble.
Fevers and Seizures: Then and Now will be posted on Wednesday, May
I have replayed this memory many times, because it was the beginning. Would my handling it differently have lead us down a different path?
In my mind, I have watched my young-mother-self over and over. Young me panicking and running out of the house with hot little Rose, knowing only that I needed help. A mother and baby alone at home among the woods, down a long driveway, inside a locked gate.
What I see now is insecurity as a mother, fear as a care-giver and and a lack of confidence in handling a new problem. This is the surprise for me. I was a confident biology student and science teacher. Why was motherhood a game-changer?
My answer is that I am a person who has to be over-prepared to feel confident. I had years of training in biology and then additional years as a teacher. I felt prepared, so I was at ease in those roles. I did read books on parenting and talk to other mothers, but I never relaxed when it came to the childcare issues. I always second guessed my decisions, thus the “Blame Game.” Maybe I will be a confident grandmother after all this experience. Ha!
Now that I have had decades to reflect on my mothering skills or lack of skills, I have come to the conclusion that I did my best with the best intentions. No mom could love her children more than I love my two. Even though I could have handled this first seizure in many different ways, I always come back to the same conclusion…
that I am glad this event occurred in the pediatrician’s office where I had a nurse’s and doctor’s assistance for this first of many traumatic seizures.