I did not realize at the time that this was a turning point for our family in many ways. My role as a mother expanded. My independence diminished. Our hopes for a quick fix for Rose evaporated. This was when we accepted we were running a marathon, not a sprint. The plans for our future began to shift and adjustments began to be considered.
Our family had to make decisions about who would take hits for the team. It could not be Rose. She was dealing with epilepsy and drug transitions. Rose was growing and developing. Epilepsy had taken too much all ready. This was when I had to step up and be her back-up. I could have played the role of the outraged mom with the child being treated unfairly. I could have been angry or resentful. These preschool folks were our friends. They were scared for Rose, not scared of Rose.
I have played the role as cushion over and over through the years. It is not a starring role but an essential one. This role is a balancing act between running block for Rose and staying out of her way. Sometimes I do too much of one and not enough of the other. I still make errors, but now Rose calls me on them.
Another reason this event was a turning point was that we began to understand that doctors, even specialist, had to search for the right treatment for each patient. That’s why it is called “practicing medicine.” I guess her struggles knocked down our faith in drugs and doctors to a more realistic level. We realized Rose’s answers would not be quick or easy in coming.
This was the beginning of Rose and me being tethered together. It has been difficult. We are both head-strong and this situation required quite a bit of compromise, usually by me. I must add a warning here. There is a difference in making sacrifices for your family and being the sacrificial lamb of your family. I have had to demand time for myself and defend my rights as an individual. Rose spent years considering me her servant and wallet. She learned this from my actions and enabling tendencies. She had to be forced to unlearn this as a teenager. It was a tough lesson for me to teach and for her to learn.
Wherever your family is on this epilepsy journey. I hope you carefully pause and reflect along the way. Think of your family as a pie-graph. During the hard times your child with seizures will take up much of the family pie. The goal is to keep the slices as balanced and fairly divided as possible. Don’t let your child be a “pie pig.” Your whole family is in the same pan.
After the series of seizures in the hospital, drug 2D was weaned down and replaced with drug 3S. This new drug was sprinkled onto pudding or peanut butter. The new set of side effects to watch for were hair loss, increased appetite, and learning issues. Well, at least her gums were safe now! Rose’s birthday is in October so she was either going to be older than her classmates or much younger. Since she was small and had health issues, we had chosen to keep her in preschool an extra year before starting public school. We were glad that we had done this in view of all these ear infections, drug transitions, and seizures. I wore a beeper on my belt at this point. I would drop her off at preschool and go walk at a park down the road or visit grocery store located just across the highway. I was never more than two minutes away. Rose and I were tethered together out of my fear. These Mother’s Morning Out days of preschool were our only break from each other. Our family loved this preschool. We knew all the teachers well since Rose’s older brother had attended there a few years earlier. The one person on the staff who was not my friend at the time was the director. She was gruff and blunt. She said what she thought without any sweet Southern filter. When Ms. B heard about Rose’s surgery and the following series of seizures, she phoned us. She informed us that the church preschool could not be responsible for handling medical emergencies. The teachers were not trained for these. Rose was a liability risk. This was hurtful to us, but I also understood it. Rose’s teachers truly loved her and if anything happened to her on their watch, they would have been devastated. By law, public schools have to accommodate students with special needs, but churches do not. Our options were to pull Rose out of her preschool or have me stay in the building every day while she was there. We were not going to tell Rose at the tender age of five that she was not welcome back into her beloved preschool because of her seizures. Instead I simply stayed at the church every day. The staff knew that I was upstairs in an empty room near the director’s office. I was only a shout away if needed. I read books and studied. Other mothers and teachers dropped by for visits. The director came by to check on me. I began helping her out with needed tasks. Then I cataloged all the children’s books and repaired them. I even substituted when other teachers were sick. The experience was good for all involved. Rose got to stay in school and her teachers did not need to worry because I was close by. The director and I became good friends. When Ms. B would drop by to check on me everyday, sometimes I shared my worries. Once when I was obsessing about an upcoming event, she said, “Don’t cross the Fox until you cross the Fox.” She then went on to share that this was some advice from Abraham Lincoln. Apparently there was a Fox River. As folks traveled toward the river they worried about whether the river was up too high or moving too fast to get across. Lincoln was reminding folks to wait and “cross that bridge when you get there.” Once Ms. B caught me crying. I was overwhelmed by all the hoops we were having to jump through to get help for Rose. She looked into my eyes and asked, “How do you eat an elephant?”and then answered, “One mouthful at a time.”
Seizure Mama speaks to parents:
Forcing the responsibility for your child’s safety onto others is not fair to them or to your child. If your child’s seizures can be dangerous or even life-threatening, you want a willing and competent person in charge of his/her care. You must be an advocate and an assistant. People fear what they do not understand. You must educate the people around your child about epilepsy. Yes, there is a stigma. There will be some shunning. But if you confidently share information with others, there will be no surprise,or public revelation to dread. We were always open about Rose’s epilepsy. This is so much better that trying to guard it like a secret. Be brave and honest. Would you hide your child’s asthma or diabetes? Of course not. Then do not hide this condition. There should be no shame. If your child senses your shame, he/she will feel ashamed of it,too. Do not hand them a handicap.
Sometimes wisdom comes in unwanted ways. The learning curve gets painfully steep during medical crises. There is trauma mixed with desperate love for a heart-breaking combination.
I am adding some things here that I have learned while my father was in the hospital with cancer. These were hard lessons. These situations may arise with your family as you navigate serious medical decisions. Let’s hope you never get to this point.
The first difficult situation is when all decision makers do not agree on the next course of action. Different personalities handle emergencies differently. This can cause friction within your frazzled family. A hospital social worker may need to get involved to get a clear idea of what the patient wants and what the doctors advise. Sometimes it is only a matter of miscommunication. Sometimes one person’s expectations are unrealistic. Other times fear blurs logic and makes a loved one afraid to have any treatment tried despite the necessity.
The second difficult situation involves Covid-19 protocol. Some hospitals allow only one family member to be with the patient. Who will that person be in your family? We tag-teamed and texted constantly to keep everyone in the loop. It was still lonely and stressful. Other hospitals do not allow any visitors under some conditions. This is horrible for everyone, especially the patient even though it may be necessary. This pandemic has effected the lives of everyone, even those who have not had Covid and are fully vaccinated. Hopefully this will end in the coming year or two.
My family left a notebook in the hospital room so that everyone could record what happened on their watch and left notes of love and encouragement in it for the other members of the team. Near the end of daddy’s life, we wrote down his every word and movement so that the information would be there to share with the entire family.
Maybe some “If- Then” discussions and role playing ahead of time will help prepare your family before you are trapped with these hospital protocol dilemmas. It is always better to be proactive than reactive.
Lastly, I would like to add that PTSD may be in your future. When it finally makes itself known, get some support and/or medication. The whole family is affected by the serious illness of a loved one. Self-care of the care-giver is very important. That’s YOU Other Mother. Your family needs you healthy and whole to play your role.
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.
Then and Now will HOPEFULLY appear on Wednesday July, 14, 2021
We are struggling here. We are doing our best. That’s all anyone can do…including you Other Mother. My dad’s memorial service is Saturday. It has been a year since he left us. I still cannot use the d-word. I am still in a sling. My garden is full of weeds. My son moved into his first house. Not all struggles are bad.
Please know my heart is with you even when I take breaks from our blog.
It is time to perfect your parent “poker face.” Your child will face many unfamiliar tests and procedures. They will watch you to gauge their response. If you are cool, they will be cool. If you grimace or flinch they will notice. If you show fear in any way through body language, they will not hear your words.
Children learn body language before words. They still rely on it heavily, especially when they do not understand the words. Terms used by medical folks mean nothing to them. If electrodes are referred to as a “pretty wire ponytail” they will not seem like something sharp or dangerous.
Patience is required for young patients. NEVER force or rush a procedure. If you do, there will be more issues down the line. Fear will never be your friend…or theirs. Prepare them as thoroughly as possible BEFORE the appointment.
The book All Eyes on Me by L. Brandon Magoni will help ease fears before an EMU stay. Brandon’s book tells about his time at an Epilepsy Monitoring Unit and includes photos of himself and his family during his stay there.
You may be scared out of your mind, but SHOW NO FEAR. Their eyes are watching your face and body, they are doing the real talking while your lips are moving and making noise.
Rose’s drug 2D required periodic lab work to check blood levels.She has always been a passive patient. I did not expect her to resist any treatments based on prior experience. So, I was surprised when we had a struggle getting some blood drawn at the local hospital. We waited in the waiting room to be called. I thumbed through magazines while Rose sat near the television. When her name was called, I picked her up to head back to a room. She squirmed, so I switched her to my other hip. The lab technician was a middle-aged man. Since Rose was small, she was positioned lying down on a table for blood to be drawn. “No, wait!” she said. “But we need to get your labs done. It’s our turn.” I reminded her. “No, wait! ” she yelled. Rose began to squirm and cry and point at the door. The man asked if he should tie her down to the table. Now, Mama wanted to yell. I explained that Rose usually did not resist labs. I also pointed out that if we tied her to the table today, we would have trouble just getting her in the room next time. I took Rose back out to the waiting room. I calmly resumed looking at magazines and she went back to watching the television. I nonchalantly told her to let me know when she was ready to get her labs done. I kept peeking out from the magazine, watching her. What was different about this time? It was not long before she came and stood beside me. I glanced up from my magazine. “Ready,” she said. I informed the receptionist at the desk that we were ready to try again. Her name was called. We went back into the room. She calmly lay on the table. The blood was drawn without incident. As we were walking back through the waiting room to leave, Rose pointed to the television and said, “No more Gilligan.” She did not mean she wanted to “wait” to get the blood work done. She wanted to go back to the waiting room and finish watching Gilligan’s Island. Seizure Mama speaks to parents. All the tests and labs that may be required for treatment of epilepsy may be confusing to your child. You need to put up a good front. They will follow your lead if you act matter-of-fact about the procedures. Discuss what is about to be done. You may even want to draw a picture of the needles and wires. That way they will know what to expect. I knew that if I let this lab technician tie Rose down to the table this time, that I could not even get her back into a room next time. She would, however, be happy to come back to the lobby to see Gilligan.
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.