‘I heard an odd noise coming from my son. I looked over to see orange drool trickle from his mouth, his body rhythmically bouncing.’: Mom fights for answers to son’s undiagnosed seizures, ‘We will never stop trying’

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“Nobody wakes up one day and thinks to themselves, ‘Today is the day my world will explode. Today everything is going to change and I’ll never get over it.’ But sometimes, that’s exactly what happens.

In April 2016, I was 32 weeks pregnant with our third child and very much feeling the everyday pressures of motherhood. We had travelled the nearly 6 hours from our northern and isolated community to the nearest city for our oldest daughter to have an eye exam and to load up on groceries and baby items we would need. We stayed overnight at a small motel with plans to pick up Kennedi’s new glasses in the morning, and grab the last few necessary grocery items before beginning the long trek back home.

The day started out on a sour note when Garrett, then aged 3, fell out of bed and awoke in a very angry mood. His sour mood continued through breakfast where he cried and refused to eat, continued on to the eye doctor where we got Kennedi’s first pair of glasses, and he continued to be extra clingy and angry as we made our way through the store, grabbing bulk grocery items and diapers. Finally, back in the truck and ready for the long drive, I handed back some snacks and got myself settled in for the drive. The highway we had to travel was long, with only one tiny community about halfway home. There was no cell service, hardly any other vehicles on the road and nothing but trees, sky, and the occasional bear to see.

About an hour into the drive, Kennedi started laughing hysterically and initially I joined in with her. I looked over my shoulder to watch her as she threw back her head and laughed, pointing over at Garrett who was sitting in his seat behind me. Awkwardly, I twisted around in my seat to see him and felt the color drain from my face and my mouth drop open the second I laid eyes on him. His hands were drawn up awkwardly against his chest, his eyes were open and rolled back, his mouth was open and orange drool trickled down his chin. His whole body was rhythmically bouncing in his seat and an odd noise came from him. I stared at him for a second, not quite sure what was happening, and then heard myself yell his name, ‘Garrett!’

Over and over, I screamed his name, reaching back and smacking at his legs, trying to get his attention. He kept on twitching with only the whites of his eyes showing. I yelled for my husband to pull over and felt the truck slow down as we moved over onto the gravel shoulder. I righted myself in my seat, searching frantically for my boots somewhere in the rubble on the floor. Finding only one red boot, I hauled it on and opened my door as the truck came to a stop. I hopped out, my bootless foot landing in a wet pile of sand, and yanked Garrett’s door open. I remember fumbling with the car seat, unable to steady my hands to unbuckle it. A seat I had mindlessly buckled and unbuckled thousands of times before was now impossible to manipulate. Finally, I freed him from the straps and yanked him out of the seat. I wasn’t sure if he was choking or having a stroke. I had no idea what a seizure looked like, but I knew whatever was happening was not okay.

We had no cell service. There were no other vehicles on the road. We were alone, on a deserted Labrador Highway, with our child who was quite likely dying, and we had no idea what to do. I remember turning his body over awkwardly in my hands, his arms and legs jutting out at weird angles, his body still making that awful squeaking/sucking sound. I wondered for a second if I should do the Heimlich maneuver, but I couldn’t bend his body enough to do anything. I carried him to the back of our truck, where my husband put down the tailgate and I laid Garrett down on his back.

A truck was coming down the highway in the distance and my husband walked into the road to try and flag it down while I tried desperately to determine if Garrett was breathing. I searched frantically for a pulse and tried to listen for breath sounds, but the beating of my own heart was so loud I couldn’t hear or feel anything. I tried to will my body to be quiet so I could hear his, but it was useless. After what felt like forever, his body finally went still and I could clearly see his chest rise as he took a big breath. Wasting no time, I scooped him into my arms and made my way back to the cab of the truck and we raced to the nearest town, hoping to find a doctor who could tell us what had happened.

We made it to the small clinic and Garrett was still unresponsive, but they assumed he had had a seizure, likely febrile, and was having an unusually long postictal state. We were air lifted to Goose Bay and then later air lifted again to the nearest children’s hospital, the Janeway. Garrett underwent a CT scan, bloodwork and an EEG, all of which came back normal. I remember laying in the hospital bed with him while the doctor told me it was likely a febrile seizure, all his testing was normal, it wasn’t anything to worry about. I remember not feeling confident in his words, but also feeling so desperate to get home that I accepted them. When Garrett was discharged a couple of days later, we flew back home to Labrador, ready to get on with life.

Little boy lies in a hospital bed after suffering through a febrile seizure
Courtesy of Stacey Doctor

10 days later, he fell down over our stairs and suffered another seizure. And six hours after that one, he suffered his third. All tonic clonic (Grand Mal) seizures, all horrifically traumatizing to watch. After his third seizure, he was diagnosed with Epilepsy. As the word hit me like a slap in the face, I distinctly remember thinking back on the doctor who had told me his testing was all normal. There was nothing to worry about. How was it possible that now we were being given an Epilepsy diagnosis?

Garrett began his first anti-seizure medication the next day, and that’s when life began to get worse. The first 3 medications we tried made everything worse. I watched my bright and happy little boy become sullen and quiet. A little boy who could climb and run and ride a bike now needed help with everything. He could barely walk, he couldn’t speak clearly, his eyes became dark and empty. He slept most of the days away and suffered new and worse seizures with every medication we tried. Within six weeks, we went from having a healthy little boy to watching him suffer upwards of twenty seizures a day, of mixed types. He endured side effects from each medication that were at times even worse than the seizures themselves. He was falling to the ground constantly and endured multiple injuries to his head and face as we searched desperately for answers.

Young little boy in a white polo and blue hat smiles while swinging in his backyard
Courtesy of Stacey Doctor
Little boy suffering from unknown seizures sleeps in a hospital bed while snuggling a stuffed animal
Courtesy of Stacey Doctor

In June 2016, I gave birth to our youngest daughter, Sadie, in the middle of our Epilepsy nightmare. She was the sunshine in the darkness, and the thing that kept me focused and moving forward. She was my bright light of hope and the reason I continued to get up most days. Each morning I would put Garrett’s medicine into apple sauce or yogurt, sneaking it into him, hoping it would help but knowing it wasn’t doing anything, only adding to the struggle. I spent my days with Sadie strapped to my chest in a baby carrier, holding Garrett’s hand to hopefully protect him from falling and hurting himself, and obsessing about how we could fix whatever had gone so horribly wrong. I called the neurology nurse daily, begging for more testing, more answers, more information. She tried her best to console me, urging me to try and accept this new reality. I refused. I logged every medication, seizure, food and activity into a notebook, hoping to eventually find a link that would explain his relentless and drug resistant seizures.

At night I would lay awake, my mind racing. I would roll out of bed in the early morning hours while the rest of the house was asleep, take the baby monitor with me down to the family room and sit at the computer staring into the screen, searching for answers. What causes Epilepsy? Intractable seizures in 3-year-old? Causes of sudden onset to Epilepsy? Terrifying information came back with every search I did. Progressive Epilepsy, Lennox-Gastaut Syndrome, Doose Syndrome, poor prognosis, life long disability, cognitive impairments, loss of skills, regression.

I switched gears a couple of weeks after Sadie was born, and instead of trying to figure out Garrett’s Epilepsy on my own at 3 a.m. in the glow of my computer screen, I instead began looking for different doctors and hospitals that might be better equipped to diagnose and help our boy. One day after Garrett’s 4th birthday, when Sadie was just 4 weeks old, I flew to Toronto with them both, leaving my husband and 5-year-old behind in Labrador for an unknown amount of time. I was desperate to figure out what was going on, and determined to exhaust all possibilities before I would ever consider accepting this as our new normal.

Mom of 3 takes a selfie with her middle child while on a walk through wheat fields
Courtesy of Stacey Doctor

During the 4-hour flight, Garrett suffered 7 tonic clonic seizures. I hovered over him, kept his blanket around him, blocking him from view of other passengers as best I could. I did not ask for help. I did not alert anybody to his medical situation. I didn’t want the plane to make an emergency landing; I needed to get to Toronto. We landed and headed straight to the ER of Sick Kids Hospital. Garrett was eventually admitted and the plethora of testing and medication changes began. He underwent an MRI, multiple EEGs, a spinal tap, genetic testing, allergy testing, x-rays, cognitive assessments, and even eye exams. They came up empty handed. No explanation for his relentless seizures, no encouragement, no hope on the horizon.

We stayed for an entire month in the Toronto area, returning to the children’s hospital nearly everyday with new and worsening seizures. We eventually weaned two medications that seemed to be causing way more harm than good and we did see a change in his seizures. He began having less daytime seizures, but instead was now having seizures overnight while he slept. After six weeks, my husband and oldest daughter came to join me in Ontario, and in September we began to make the long drive home to Labrador. Our hearts were shattered, life felt heavy and unbearable. I couldn’t believe this was our reality.

Little boy sleeps in a hospital bed in Toronto during a 6-week stay for various testing
Courtesy of Stacey Doctor

As we drove through Montreal, Garrett suffered his worse tonic clonic seizure to date. I gave rescue medication but it failed; I tried everything to get it to stop and still his body kept seizing. We made our way to the Montreal Children’s hospital, and by the time we got there he was lifeless. His body was limp and clammy as I carried him into the emergency department. As soon as we were spotted he was whisked out of my arms and down a hallway into the trauma department. He was placed in Red Zone room 1. Code blue was called over the PA system and the room immediately filled with people. I stood there, watching my child seize, wondering if this was it – is this the seizure that takes him from us?

Garrett was eventually stabilized, but we spent the night in Red Zone room 1. At this point my newborn had spent more nights in the hospital with her brother than she had spent at home. I was exhausted and sad, and Garrett was so unlike himself I had a hard time recognizing him. We were admitted for the next couple of nights, where a new doctor took a swing at Garrett’s Epilepsy and this time we had some success in getting his Epilepsy under better control. A new, fifth medication was added, Rufinamide. It was our best fit up until that point and it successfully extinguished all of Garrett’s daytime seizures. We are still left with the frequent nocturnal seizures and have been unable to control them for the last 5 years.

Garrett is now 9. He still continues to struggle with nightly seizures and the side effects that come with them. In recent years, we have added steroids for brief periods, monthly IVIG infusions, and CBD and THC. Although he has some significant cognitive struggles, he continues to make small, slow, but meaningful progress. Even the tiniest steps forward are progress to be celebrated. He loves to play video games, build Legos, and snuggle his mama. I don’t complain about the snuggles – I hope he never outgrows them! Last year we added a seizure response dog, Freedom, to the mix and he has been a true blessing. Although trained to alert to Garrett’s seizures, he is so much more than a medical device. He is a bestfriend, a constant source of love and support without judgement or criticism. He is constantly at Garrett’s side, attends all medical appointments with us and helps to reduce the anxiety that comes with procedures and new situations.

Little boy with epilepsy snuggles his seizure response dog, a white poodle named Freedom
Courtesy of Stacey Doctor

It has been over 5 years since Garrett’s Epilepsy diagnosis. He remains undiagnosed – meaning we have no idea what the root cause to his seizures are, why we cannot get them controlled and we have no way to predict what his future may look like. This is by far the hardest part of the journey for me as a mother. Although none of us know what the future holds, it is particularly hard to know your child has a disorder that appears progressive in nature and to know everything we do is merely trial and error – a guess – a stab in the dark that may or may not make things better or worse. We will never stop looking for answers and solutions. We will never stop trying to control Garrett’s Epilepsy in hopes of giving him the best quality of life we can.”

Little boy with undiagnosed seizures smiles while in a hospital bed
Courtesy of Stacey Doctor

This story was submitted to Love What Matters by Stacey Doctor. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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