This post covers the six months following Tarica’s epilepsy diagnosis. It was written back in September, so when I say “today,” I’m referring to the day I wrote it.

* * *

September 8, 2014

Six months have passed since that Saturday in March when Tarica put her fist into her cereal bowl. She continued to seize for several weeks after her hospital stay, but the seizures dwindled in number and eventually disappeared. We—her mother most of all—struggled to accept the child she had become on the anti-seizure medication.

In the early days following her diagnosis, the drugs made her so tired she was sleeping up to seventeen out of twenty-four hours, more than her baby brother slept. After some adjustments to the dosage, the sleepiness dropped to a more acceptable level, although she was still noticeably drowsy.

She had been an easy child, but no longer; this Tarica was more aggressive, more volatile, and more irritable, common side effects of anti-seizure medication. The day after she came home from the hospital, I saw for the first time what would become normal: She and Jenica fought like alley cats. Prior to epilepsy, Tarica had been too laid-back to stand up to her big sister.

I grieved the change in Tarica as much as I grieved the seizures. Between the seizures and the drugs, we had lost the girl she was supposed to be, and on the worst of days, the grief felt as real as a grave.

But the seizures were gone. If this was the price of living seizure-free, then so be it.

We spent May and June in relative calm.

Mid-July, the seizures returned. One, at first, followed by a second one a few days later. Eventually, they were occurring once a day, and I called the doctor. Over the next several weeks, we increased both her Keppra and Tegretol doses. The seizures kept coming until we were seeing them two and three times a day.

Dr. Thakkar prescribed Klonopin as a bridge medication for two weeks. This drug is so strong it can only be used for a short time. Dr. Thakkar hoped the Klonopin would suppress the seizures long enough to allow the Tegretol and Keppra to take hold. However, we saw no difference when she was on the Klonopin; in fact, the seizure frequency was escalating.

Near the end of August, Dr. Thakkar changed the liquid Tegretol to a slow-release capsule version of Tegretol called Carbatrol. This time, we saw an almost immediate effect on the seizures. Within days, Tarica was down to one seizure a day, and on August 31, we celebrated her first seizure-free day in over a month. Four more days followed, all with no seizures. I couldn’t believe how much lighter I felt. Gone was the watchfulness that had dogged my steps.

On September 5, the seizures returned. Three happened that Friday, followed by three on Saturday, one on Sunday, and two on Monday—today—so far. When she heard the seizures were back, Dr. Thakkar instructed me to take Tarica for bloodwork to check her drug levels, which I am planning to do tomorrow. If the levels are low enough, we will increase the Carbatrol.

Maybe that will be the answer.

The story continues in part two.

I hate drugs.

Yes, I have a daughter who is able to function because of two powerful drugs, but I still hate them.

When we drove home from Children’s Hospital of Pittsburgh that day in March with a bag of prescription drugs beside me and a daughter seizing behind me, I kept rolling options around in my head. The neurologists and my reams of paperwork both mentioned a diet known to control seizures in some children. I decided to look into it. Maybe we could put Tarica on the diet instead of the drugs.

When I researched the ketogenic diet, I learned that it was strict. Strict as in, weigh every gram of food. Strict as in, measure the carbohydrates in the toothpaste. I learned that the diet was high in fat, low in protein, and virtually nonexistent in carbohydrates. As I read, my heart sank. (I know that’s a cliche, but honestly, it best describes my feelings.)

I saw we had a problem.

When our first child was born, I intended to teach her—among many other idealistic goals—to enjoy a wide variety of foods. As soon as I started her on solid food, she slurped up pureed peas and beans and squash as if they were candy. As she grew older, she devoured lettuce salads and broccoli and many other foods frequently hated by toddlers.

Along came daughter #2. While my ideals had taken a hit with daughter #1, in food I had not wavered. What worked for the first child would work for the second, especially since this daughter was unopinionated and easy-going in ways our firstborn never was or would be.

I could not have been more wrong. Our easy-going, unopinionated second daughter stopped going easy and developed unshakable convictions when a plate was placed in front of her.

When I say she was picky, I don’t mean she turned up her nose at the usual toddler-shunned broccoli. I mean she abhorred apples, cake, grapes, potatoes, corn, peas, pumpkin, all types of beans and greens, carrots, various meats, pineapple, pizza sauce, certain kinds of cookies, rice, and innumerable other foods lost to the mists of frustration. She suddenly refused to eat meatloaf after enjoying it unreservedly, and it took us a year to learn that she started hating it after seeing me put a teaspoon of mustard into the sauce poured over it. She disliked every new food on principle, and if a hated food was put into her mouth, she gagged and retched.

Mealtimes were battles, and I was determined to win. But she was determineder. She went on hunger strikes rather than eat food she disliked or suspected she disliked. I soon learned that while I could sometimes get food into her mouth, I could not make her swallow. Punishments and consequences made no difference. Not even outright bribery worked.

We couldn’t live with the constant warfare, so I reassessed the field and found ways we both could compromise so peace could be restored. With time, she learned to like some foods she had hated, and I had many opportunities to practice patience (or not, I’m sorry to say).

And now this same daughter had been diagnosed with a disorder that could perhaps be controlled by a strict diet containing foods she hated and foods she didn’t recognize, none of which she’d eat willingly.

Could I drag her into such a diet? Could I turn our mealtimes into battles again? This time, the consequences of her refusal to eat would be, could be, staggeringly high. I would need her cooperation, but we had battled too long for me to hope she would suddenly change. She was only four, not old enough to understand the implications of refusing her ketogenic lunch, but old enough to be entrenched in her likes and dislikes. Ha. She was entrenched in her dislikes before ever I put a spoon in her mouth.

God, I said, You picked the wrong daughter. Jenica, now, she would enjoy the challenge of a unique diet. She would like most of the foods. She would cooperate. Tarica won’t. What on earth were You—?

The audacity of questioning God’s thoughts stopped me mid-scold.

God knew Tarica’s story before it began. He knew I would reach this point and ask these questions. He knew, but still He allowed her to have a palate as discriminating as the black-footed ferret’s. I had to trust He knew best, even if it made no sense to me.

Could I put Tarica on the ketogenic diet? No, I can’t, not until she is willing to cooperate at the table. Perhaps if she grows old enough to want seizure control more than her food preferences, perhaps if we run out of options, perhaps if God modifies her taste buds or her food-related stubbornness—perhaps then we may consider it. (At this point, we are hanging our hopes on brain surgery; if she qualifies and it is successful, then the diet will not be needed.)

I also learned that children on the ketogenic diet frequently are on seizure medication, too, so my idea of the diet instead of the drugs wasn’t a guarantee. In addition, only 10-15% of children on the ketogenic diet become seizure-free, so it’s not a miracle cure for everyone. I’ve read some amazing success stories, such as Autumn’s at Keto Joy. Stories like hers make me want to try it, but until my daughter and I can do it together, side by side, both fully invested in making it work, the ketogenic diet isn’t for us.

That didn’t stop me from demanding a sign from God, but that’s a story for another day.

Read part one, part two, part three, part four, and part five first.

This portion of the story opens the day after we received Tarica’s epilepsy diagnosis. She is still seizing, but now we know why. Sort of.

* * *

Friday began with purpose: to get Tarica’s seizures under control and to discharge us as soon as possible, given our self-pay status. Tarica was restless and irritable, wired as she was to a machine. She was also actively seizing.

As she ate breakfast, her head kept dropping to the side, her breathing would grow heavy, and her arm would lock into what had become her normal seizure posture. One seizure came after the other, and I looked at Linford, frightened. “Are we supposed to take her home when she’s seizing like this? I don’t know if I can do this.”

“I want to get out of here,” he said. “We need to get home. She needs to get home.”

I straightened Tarica’s pillow as she came out of a seizure and moved her tray closer. Her hand shook as she shoveled eggs onto her spoon. I moved away and spoke quietly. “I want to leave, too, but I’m the one who will be giving the medication and providing her care. It scares me. So much to learn. And what if she has another tonic-clonic seizure?” I rubbed my forehead. “I don’t know if I could handle it.”

“We have the emergency drug if a seizure doesn’t stop.” He eyed me. “Do you want to stay here until the seizures are gone?”

I shook my head violently, impatiently. “No. No, I don’t. It’s just…too much.”

* * *

Dr. Rajan prescribed Tegretol in addition to the Keppra. She and Dr. Katie went over the dosing instructions with me several times. I learned how to use the emergency drug, a nasal inhalant that would snap Tarica out of seizure if she had one that would not quit. They gave me reams of information—on epilepsy, on seizures, on medication—which I stuffed into a blue folder for a time when my head was clearer. If all went well, Dr. Katie said, we would be discharged that evening.

Sure enough, the EEG wires were removed that afternoon. For the first time, Tarica was free to climb out of bed. Her first steps were like a baby’s, and as she teetered and careered all over the room, I remembered vaguely that one of the early side effects of Keppra was unsteadiness.

After watching her rocket around and bounce off the walls, I volunteered to take her to the playroom next door while Micah (and Linford) took a nap. The first toy she claimed was a little car, so I took her on a few jaunts around the unit. We passed by many doors, most of them closed; behind each one, children had wept and slept, cried and died. I wished I knew the stories that had begun and ended here on floor seven. Perhaps those stories would take my mind off the unknowns in the story we were living.

In the playroom, Tarica raced from one toy to the next, as if they would vanish at any moment. There was a madness in her movements and in her eyes. And she never said a word. She was a silent bird trapped in a room, crashing blindly inside unfamiliar walls.

Unsettled, I looked through the game cupboard for something to occupy both of us. I pulled out a box. “Look, Tarica. Want to play Memory with me?” It was a test. She loved Memory and was able to match more pairs than I in nearly every game we played. Her ability had always astounded and confounded me.

She staggered up to the table and plopped into a chair. We flipped the cards upside down and started playing. As she began amassing a stack of pairs, the knot in my stomach loosened. Despite my best efforts, her stack grew faster than mine, and when she ended the game triumphantly, I was grinning nearly as wide as she was. Underneath the drugs and the seizures, she was still our Tarica, and her memory had survived intact.

A nurse informed us that the discharge papers were nearly ready to go, and we could start packing up. Linford began hauling suitcases and bags out to the van stashed somewhere in the bowels of the parking garage. It took multiple trips; where had all this stuff come from? He stopped at the hospital pharmacy to pick up a collection of drugs, the first of many prescriptions filled. I got Tarica dressed, but her hair, after four days of glue and wires, was a tangled, greasy mess, impossible to tackle at the time.

While she teetered around the room, I gathered odds and ends together and overloaded the stroller. Before we left Room 721 for the final time, I picked up a dry erase marker and wrote “Thank you so much. The Leinbach family” on the whiteboard. It had been a grueling four days, but we had been treated well. Even more, we had been given the knowledge and assistance we needed to live with an epilepsy diagnosis.

We stepped from the hospital into the parking garage, and as the scent of exhaust and wet concrete hit me, I realized that Tarica and I had not been outside since Monday, unless you count the brief space between house and ambulance, ambulance and hospital, on Tuesday. For four days, our world had shrunk to fit inside the brick walls of Children’s Hospital, and while others came and went, including her caregivers, we stayed and waited for a verdict and a plan. And we were just one family out of so many. I thought of all the people I had encountered in my treks to and from the cafeteria. All those parents of children, all those children suffering.

I wanted suddenly to just be home.

We pulled out of the parking garage around 7:00. As we threaded through Pittsburgh’s streets, I looked back to see Tarica had climbed out of her seat belt to stand, half-crouching, on her car seat. I muttered to Linford, “She’s acting crazy.” Turning in my seat, I sat her down and strapped her in again.

Linford asked, “Tarica, do you want to call Gram and tell her you’re going home?”

That pleased her—and distracted her from another escape attempt. Linford dialed his mom and handed the cell phone back to Tarica.

She had barely begun to speak when she broke off mid-word. I looked back to see her seizing. I rescued the phone and finished the conversation.

Within the next fifteen minutes, Tarica had seven seizures. What if…what if…? Fear leaned in and nudged me, along with disbelief. It wasn’t over. We were going to have to live with epilepsy. It didn’t fit into our world, our plans, our dreams, but we didn’t get to
choose. We could choose only to face it with courage in spite of fear and faith instead of doubt.

We would face it with God.

There was no other way.

This is a continuation of our epilepsy story. Here are the links to part one, part two, part three, and part four.

As this portion of the story opens, Tarica had been in the hospital for two days. We had not yet heard the results of the MRI and spinal tap. She was still seizing.

* * *

Thursday morning dawned, two days, two weeks, two years since we found Tarica unconscious. What is time when your child is in the hospital? It’s merely the intervals between discovering another piece of the puzzle.

Our pastor Jason and his wife Christine arrived mid-morning, accompanied by Linford and Jenica. We had decided to pull Jenica out of school for a day so the girls could see each other and so we could briefly be together again as a family. Tarica was happy to see Jenica, who brought a stack of cards from her classmates, and the gift and balloon from Jason’s. But she drew her greatest joy from the smallest visitor. Jason and Christine had brought their infant son along, and Tarica begged to hold Trent. Christine helped Tarica cradle him for a little, and she briefly glowed with her old joy. This had not changed. She still loved babies.

Not long after the visitors arrived, Dr. Rajan, one of the neurologists seeing Tarica, stopped in with the MRI results. It was odd, to sit beside my daughter waiting for the verdict, knowing that what is going to come out of the doctor’s mouth will change our lives. To think: I should be horrified and shaking, but I’m calm and resolute. Perhaps anything, even a terrible diagnosis, was better than not knowing.

With the ease of practice, Dr. Rajan laid out the facts. “The spinal tap came back clear. No sign of any infection causing the seizures. Good news.” We nodded. Yes. Good news. “The MRI, it looked good—except one tiny speck of abnormality, so small you almost have to imagine you see it, on the right side of her brain, near the division between the two halves.” The doctor touched the top of her head. “We don’t know why it’s abnormal. It could be caused by the seizures, or it could be causing the seizures. Perhaps she had it from birth. We don’t know.”

“What does this mean?” Was it Linford or I who asked the question?

“Epilepsy.”

* * *

In eight letters, we entered a new world. It wasn’t so very different from the one we left behind, but for a profusion of strange words—complex partial seizures, status epilepticus, tonic-clonic—and a boatload of new fears for our daughter. Epilepsy is, despite the medical knowledge and technology of the twenty-first century, a disorder with many unknowns.

With the diagnosis, the hospital staff began focusing on managing the seizures with the right combination of medication, as well as educating the patient’s parents. So much information—my head felt like it would split.

I drew great comfort from one fact: Dr. Rajan reassured us that the seizures had caused no brain damage. During that endless first night in the hospital, I feared a brain tumor and I feared brain damage. I thanked God over and over that neither existed.

After several hours, Jason and Christine left, taking Cassondra and Jenica with them.

The night did not go well. Tarica was restless with frequent seizures, but it was easier to face an enemy that had a name.

Epilepsy.

* * *

A quick update on the arm: Tarica has a fractured elbow.

When the doctor asked her what color cast she wanted, she eyed him narrowly. “What colors do you have?” she asked.

“Well, we have red and blue and green. Oh, and purple.”

She frowned. “But do you have pink?”

He did, and she is now wearing a neon pink cast. She could stop traffic and indigestion with it.

Which we will undoubtedly be grateful for when we get the bill.

* * *

Read more in part six.

This is part four of our epilepsy story. Read part one, part two, and part three here.

Where we are in the story now: It’s early, early Wednesday morning at Children’s Hospital of Pittsburgh. Tarica has been irrational, hallucinating, and fighting ever since mid-afternoon on Tuesday. We still don’t know why she is seizing.

* * *

Around 2 a.m., Tarica fell asleep. Linford and I lay down. My muscles shook, and my knee throbbed. Sometime in the last twenty hours, I had bruised it badly, probably while I was wrestling with our daughter.

Tarica woke with seizures throughout what remained of the night, thrashing and fighting in her bed, although she was more easily subdued than before. I stumbled between her bed and mine, and when Micah requested his breakfast before seven, I felt as if I had not slept at all. I fed him, amazed that I could still do this. Yesterday had wrung me dry in all ways but this one.

Linford and Tarica were sleeping, but they wouldn’t stay that way long if I turned Micah loose. I crept out of the room with him and my Bible to the window-enclosed lounge at the end of the hall.

Dawn was breaking over Pittsburgh. Micah pushed his nose against the glass, hands braced on the radiator, and watched the headlights track back and forth seven stories below us. I curled up on the slippery couch in the corner and opened my Bible. The words of Micah 7:7 jumped off the page: “Therefore I will look unto the LORD; I will wait for the God of my salvation: my God will hear me.”

I stopped reading and swallowed hard. I looked from the words of the prophet Micah to my son who bore his name to the wall of windows. The headlights and brightening horizon were unfocused blurs beyond the tears. My God will hear me, and He is my salvation. I could no longer see to read, so I prayed the sun up and my fear down until little hands tugged at my skirt and a parent holding a crying child walked in.

As I returned to Tarica’s room, I thought about that parent’s weary face. Could the nurses tell at a glance which parents were still waiting for answers? Did we wear our shock and grief on our faces?

Tarica woke and demanded food and water, which we could not give. Her MRI, according to the nurse, was scheduled for 11:00. Linford’s mom returned and resumed care of Micah, so we could focus on Tarica, who did not handle her fast well. She begged and pleaded, bucking on the bed, for her sippy cup, for “eggies,” for anything, and I wept with the strain of saying “no, not yet, just wait, sweetie, I know it’s hard, just sleep for a little,” over and over again.

Under the influence of the drugs, her vision doubled and tripled. She looked at Linford holding Micah and thought her daddy had two heads and was holding three babies. When Doctor Katie came in to see how she was doing, Tarica, lucid for the moment, squinted at her. “One…two…three…four…five… six,” she said, the words blurred. She laughed. “You have six eyes.”

In the light of a new day, it became evident that the Fosphenytoin given to Tarica had created the nightmare. Her dose at two in the afternoon did not allow her to sleep until two in the morning. We requested that Tarica not be given that drug again. We could not survive another twelve hours of insanity. She was then put on a drug called Keppra.

My parents and sister arrived. Cassondra hugged me, and for a moment, I mentally sagged. Oh, to not be brave for just a little. Tarcia summoned up smiles for them, but they were shadows of her usual ones. I saw their tears at the sight of her hooked up to machines, eyes glazed and heavy.

Around noon, the EEG wires were removed in preparation for the MRI and spinal tap. Sometime later, the MRI team came for Tarica. Linford went with her. Everybody else took Micah down the hall to the lounge while I lay down for a nap.

I had slept for maybe twenty minutes when the door opened, as doors frequently do in a hospital, and a nurse peeked in. She disappeared without a word, but the damage was done. I rose, took a shower, gratefully climbed into clean clothes, and went to find my family.

My parents and sister accompanied me to the cafeteria where I forced myself to eat a full meal, my first in a long time. We talked as I ate. “My greatest fear,” I said, staring past my father into an exterior courtyard dripping with rain, “is that her brain will be permanently damaged. What if—” I choked back tears and poked at my green beans. “What if she’ll never be our Tarica again?”

Nobody said anything for a long time. Micah jolted in his stroller where he was sleeping but didn’t awake. The buzz of the cafeteria faded, and we sat in a cocoon of silence.

We returned to the seventh floor and waited until Linford and Tarica arrived. She was groggy from the anesthesia and desperately thirsty. When I handed her a sippy cup, she drank without stopping until it was nearly empty. We discussed food and ordered it, giving her graham crackers while we waited for the food to arrive.

A woman from the EEG department showed up to reattach two dozen wires to Tarica’s scalp. It didn’t go well. We were running out of distractions, and the food inconveniently appeared after it was over.

The day fell away. My parents left, taking Linford and his mom with them. Cassondra stayed to help me with Micah, but she also occupied her still-distraught niece when my attempts failed.

That night, thank God, we all slept as well as can be expected in a hospital. The EEG captured continual seizure activity in Tarica’s brain, but she slept undisturbed most of the night.

To be continued, in part five.

This is part three of our epilepsy story. You can read part one and part two here.

Summary of the story so far: Tarica is in the ER at Children’s Hospital of Pittsburgh after having a grand mal seizure on Tuesday morning. We still don’t know why she is seizing repeatedly. It is now Tuesday afternoon.

* * *

The nightmare started as restlessness. What child wouldn’t be restless, stuck in a bed all day? Her brain was the problem, not her body. And she was hungry. She was thirsty. The IV—she picked at it, and I eased her hand away. I distracted her with a toy a nurse had brought in to entertain Micah, but it didn’t last long. She tried to climb off the bed, and when I pressed her back onto her pillow, she fought me.

“Can you grab her legs?” I said to Linford. “She’s trying to kick me.” I clasped Tarica’s free hand tightly so she wouldn’t yank out her IV line. With my other hand, I held her down on the bed while Linford cuffed her ankles in his hands.

A pair of neurologists came in. The CT scan looked clear. An MRI would provide a more detailed picture of her brain. I found it difficult to concentrate on their words; Tarica twisted and arched continuously under my hands.

The afternoon wore on. One of us—and sometimes two—sat beside Tarica, trying to keep her still and on the bed. She became disoriented. “Are we at Beth’s house? Are we at Sophia’s house?” she asked over and over again. “Who changed the room?” Her words became slurred, her thoughts murky.

When they wheeled her upstairs to the seventh floor, I sat on the stretcher, holding her, holding that determined free hand, one of my legs pinning hers down.

As we entered Unit 7A, she became even more agitated. I tried to distract her. “Look, there’s a frog on the nurse’s desk.”

The stretcher moved, and the frog disappeared behind a pillar. She nearly bucked off the stretcher. “I wanna thee frog. Where ith frog?”

I lashed her down with my arms. “Just wait. The bed will move again, and then we will see it.”

The bed moved; the frog appeared. “Look, there’s the frog.” She relaxed, but I couldn’t. What awfulness had invaded our sweet little girl’s brain?

In room 721, Tarica was transferred from the stretcher to a bed, more space to fight and thrash, enough room for one of us to lie beside her and hold her down. We learned the MRI wasn’t happening until tomorrow, so she could eat now. Now? When she was nearly insane and completely unreasonable? But starting at midnight, she could have no food or drink until after her MRI and spinal tap were done on the following day. She had to eat now.

Food arrived, and like the frog, it became a distraction of debatable value. She would cram a bite into her mouth with shaking hands, but then she would writhe and scream and try to climb off the bed.

The hallucinations began. Bugs crawled on the walls. She became hysterical—oh, her eyes, her eyes—screaming that a man was trying to get her. She reached out and tried to grasp hold of objects dancing in the air before her, or tried to bat them frantically away.

Sometime in those unholy hours, she cranked her head my way. “Who are you?” she asked.

My mouth went dry. “Don’t you know who I am?”

“No,” she said, studying my face in a detached manner.

“I am your mommy.” I tightened my hand around hers.

She stared at me blankly.

Our Tarica was gone. In her place was a savage child. I held her against me on the bed, my arms and legs restraining her flailing limbs, and prayed. “God, please let her fall asleep. Please, God, please, oh, please.”

* * *

The hours bled into each other. I looked at the clock, but the hands said nothing that mattered to me.

A nurse came in, masked and gowned. Tarica was under isolation, according to a red sign hanging outside the door of her room. Sometimes a brain infection can create seizures, and until we knew if she carried something contagious or not, every nurse and doctor donned pale yellow gowns and masks before entering.

“Can’t you,” I said to the nurse, “please sedate her? She’s been fighting for hours, and she’s exhausted. We’re all exhausted.”

No, sedation isn’t an option. Just keep her as calm as possible.

I wondered what the nurse would do if we would throw our hands into the air and collapse. What would they do if we allowed Tarica to yank out her IV line, climb off the bed, rip the wires off her head? Would they find someone else to hold her down? Would they sedate her then?

One of the nurses—I cannot remember which one; all distinctive features except for eyes were hidden behind masks—was surprised when Micah babbled from the floor by the sofa. “Oh, I didn’t know you had a baby.”

Another nurse with familiar eyes said, “He’s been such a good boy, you’d never know there was a baby in here.”

Thank You, God, for one small blessing.

The evening blurred into night. We hung on grimly to our daughter. Micah fell asleep in his Pack-n-Play, despite Tarica’s ruckus, waking only at midnight. A quick feeding settled him again.

The hospital settled into the quiet hum of the wee hours, and still she fought. Despair clawed at us. How long would this last?

Tarica laughed, surprising us. “I thee…I thee…baby Jesus,” she said, reaching out her hand, lost to a world only she could see.

Linford and I looked at each other. The hours hung haggard on his face. “I can’t take this any longer,” he said. “If this is what she has become, maybe it would be better—”

I pressed my face against the gauze cap that covered the bristling wires on Tarica’s head. I couldn’t stop the tears.

* * *

The story continues in part four.