After years of thinking we didn’t want children, life changed and we began the journey of finally starting a family. I gave birth to a beautiful (and BIG) healthy baby girl in August 2018. She was finally here, and everything was perfect.
In January of 2020 the whole family came down with the flu and Piper had her first febrile seizure at 17 months old. Being in healthcare myself, I was well aware that children can commonly have seizures when fighting a high fever and ER assured us it was common and nothing to be concerned about. We were sent home with the knowledge that this may or may not ever happen again. Nothing happened, no more seizures with or without illness or fever… until her 3rd birthday. This is when things get interesting.
Piper crashed her own birthday party with a trip to McMaster Children’s Hospital and 2 seizures in one day. No fever this time, which resulted in a non-urgent referral to a Pediatric neurologist and EEG. Over the next few weeks & months, Piper had multiple seizures that progressively became more frequent and longer.
By October 2021 she was seen by Neurology and diagnosed with epilepsy. Our lives have forever been changed. Further investigation revealed a genetic cause, with a defect in the SCN1A gene commonly associated with Dravet Syndrome. Those first few months after her diagnosis were filled with fear, anxiety and many, many tears. She began anti-seizure medication, transitioned to a new daycare and somehow became seizure free for 7 glorious months. Since then her seizures have picked back up, occurring monthly on average, despite multiple medications with increasing dosages.
Piper has officially been diagnosed with GEFS+ (Genetic Epilepsy with Febrile Seizures +), which is found on the milder end of the SCN1A spectrum (much like how autism has a wide spectrum of severity). Her seizures are often prolonged (20-90 minutes), requiring an intranasal medication to be administered as soon as the seizure starts. Although she is of normal intelligence, we still encounter challenges and obstacles on a daily basis. Imagine your typical kindergartener being told to take 3 daily medications twice a day, medication side effects, frequent blood work to check medication levels, sedated MRI’s and outpatient EEG’s. She has undergone so much more than any child her age should have to, yet she wakes up each morning ready to conquer the world. Piper has taught us to live each day as it comes, to always be prepared and to live life to its fullest. I try to no longer let epilepsy rule my life, but instead understand that it will be with us everywhere we go.
I’ve been incredibly thankful to have met an outstanding group of women and mothers in the epilepsy/SCN1A community who have guided and supported me over the past 2 years since our diagnosis. Without a support system like them, along with organizations such as Epilepsy South Central Ontario, I don’t know how I would have gotten through the tougher times. We have had to educate teachers, instructors, coaches, child care providers, etc. on how to recognize, respond to and treat a seizure – a task that most certainly didn’t sign up for!
We’ve been met with nothing but compassion and understanding from everyone in our lives. We hope that Piper’s story can offer hope and raise awareness. She is now a VERY happy child who participates in dance, swim lessons and is a proud SK student who is currently working on improving her listening ears. Our future looks very different from how I could have ever imagined it would be, but we will continue to fight and are proud to be part of the strong and powerful epilepsy community!
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