Elise’s Story
Purple for Elise
I will never forget Elise’s first seizure at the age of 3 and half. It was a cold January day in 2013, Elise and I were walking to go pick up her big sister at the bus stop. Elise clasped to her knees and started to cry that she couldn’t see. I picked her up, wiped her tears and I recall the blankness in her eyes. I realized she was having a seizure. I sat in the snow, called my husband quickly to grab our oldest at the bus stop, then 911. Elise was in a status state. The amazing team in the Kelowna ER department was in contact with BCCH and did everything they could to try to manage the clusters of seizures that were happening. After many tests, CT scan, EEG, spinal tap, swabs, blood work and MRI we received a diagnosis. Elise has a diagnosis of a rare neurological disorder, Subcortical Band Heterotopia. We were relieved, but also felt very lost as there wasn’t a lot of information in regards to this diagnosis. What we knew is that while Elise’s brain was being developed in the fetus, her neurons didn’t migrate to the next stage of the brain development or they migrated to other areas of the brain where they didn’t belong. These neurons are still active, they send constant signals, which causes her seizures. SBH causes intellectual and developmental delays as well as drug resistant Epilepsy.
Elise has failed many anti seizure medications. To a time where she was taking 3-4 different types of anti seizure medications to help try managing her seizures. Elise fought many types of seizures daily and constantly. She had drop attacks, tonic clonic, clusters of myoclonic seizures, focal seizures and absence seizures. Seizures were getting out of control, to a point where she would have a change in colour to her skin, her lips would go blueish gray, her hands and feet where very clammy and she would stop breathing during a seizure, it was so heartbreaking and terrifying. We were scared of losing our daughter. She was disappearing. She was a frequent patient by ambulance to the ER department in 2017. Our amazing team at BCCH were able to determine that Elise qualified for surgery. After many tears, difficult conversations, Mike and I agreed that the best gift we can give Elise for a chance at life and a better quality of life is to go ahead with the surgery. In May 2019, Elise had a ⅔ corpus callosotomy. They split her brain ⅔ apart, we decided not to do a full separation because Elise had her speech and we didn’t want to risk losing that. This surgery was a blessing; it managed her drop attacks, significantly decreased her tonic clonic seizures. Her daily medications were reduced as well. Sadly, SBH makes managing seizures a challenge. Other seizures surfaced more frequently. Elise continued to battle daily clusters of focal seizures and myoclonic seizures. After more EEG monitoring, BCCH said that Elise qualified for a Vagnus Nerve Stimulator surgery. We decided to go ahead with this option, we wanted to give Elise an opportunity to help manage her seizures and continue to help provide her with a better quality of life. In March 2022, Elise had her VNS implant. This procedure has given Elise a break in constant seizure clusters. It has decreased her daily seizure activities and her psot seizure recovery is better. VNS has also helped manage the myoclonic clusters. Despite all the things we have in place, her diagnosis of SBH, still causes daily battles with seizures, but life with Epilepsy is at a better place than where she was pre surgeries.
Epilepsy does not define who Elise is. She has an Epilepsy diagnosis. Elise is kind, creative, strong, helpful and able. She loves music, arts and crafts, nature, animals, puzzles, board games, sensory toys, camping and sitting by the beach.
Yes Epilepsy upsets us, discourages us, disappoints us, makes us feel so helpless, interrupts moments, knocks us down. I hate Epilepsy so much. It can impact Elise’s day to day life, but she is always smiling. Epilepsy has impacted her sibling's life. It interrupted and hijacked our time from her, as it constantly came crashing without warning. We are parenting two completely different worlds. We can't do it without our village of people. Thank you to everyone who has been a part of our family's journey. You have all made an impact in our lives and we are forever grateful.
My wish is that by sharing Elise’s journey, it helps educate others, it shines a light on Epilepsy, connects us with other families and hopes to inspire someone. Everyone knows someone who has had a seizure, who has Epilepsy. I truly feel it needs more attention and awareness to help with research in hopes to find a cure for Epilepsy, even better a cure for drug resistant Epilepsy.
#purpleforelise
Carole, Elise's mom
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