Our life with epilepsy
Lisa and her son Oliver, have ridden the rollercoaster ride of seizures since he was a baby. Here is her story.
How did you first become aware that there might be a concern about Oliver? What were the early signs that led you to seek a diagnosis?
Oliver was having breath holding spells from about 8 weeks of age. We knew this could be semi-normal for a toddler, and usually tantrum related, but certainly not normal for a baby his age. He would have these spells and that would be followed by what looked like a small seizure which would be followed by some sleeping time.
Can you tell us a bit about the diagnosis Oliver received?
Oliver was initially diagnosed with epilepsy after numerous consultations with specialists regarding his infantile spasms. These spasms are typically considered a medical emergency, requiring prompt treatment to prevent potential damage caused by the seizures. However, they can be challenging to identify, as the spasms often occur in clusters and can resemble the startle reflex.
Further investigations into Oliver’s epilepsy revealed cortical dysplasia on the right side of his brain, which was triggering different types of seizures. Despite trying several medications, Oliver was eventually diagnosed with refractory (drug-resistant) epilepsy, along with developmental delay.
How has the diagnosis impacted your family dynamics and daily routines? Have there been any specific challenges or adjustments you’ve had to make?
Oliver’s diagnosis has brought significant challenges for our family. He underwent a right-sided hemispherectomy, a procedure that disconnects the right side of the brain, in the hope of stopping his seizures. While he continues to have seizures, their frequency and severity have improved compared to before the surgery.
Oliver receives regular therapy, including speech therapy, occupational therapy, and physiotherapy. He needs assistance with most daily tasks and experiences developmental delays compared to his age. Balancing Oliver’s needs with parenting his sister, who doesn’t face the same struggles, is a constant challenge. We work hard to ensure she feels seen, heard, and equally supported.
What kinds of treatments, therapies, or interventions has Oliver been receiving?
Oliver currently receives occupational therapy, speech therapy, and physiotherapy. However, we’ve had to reduce the frequency of some sessions to find a better balance between family life, work, and ensuring he has downtime. It’s an ongoing process of reassessment as we strive to meet everyone’s needs.
As a parent, what are your primary concerns and hopes for Oliver? How can those around you offer support during this time?
Our main concern is what the future holds for Oliver. Our goal is to support him in becoming the best version of himself, whatever that may look like. We’re grateful for the emotional support and understanding of those around us–every bit of help is deeply appreciated. Parenting is demanding at the best of times, and adding these extra stresses into the mix definitely makes things more challenging and takes a lot out of you.
