March 26 is World Purple Day.
Lisa and her son Oliver have ridden the rollercoaster ride of epilepsy since he was a baby.
Here is her story: Thankyou Lisa for sharing your Source Mama story with us.
1. How did you first become aware that there might be a concern about your child’s health or development? 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 not normal for a baby this age! He would have these spells and that would be followed by what looked like a small seizure that would be followed by some sleeping time.
2. Can you tell me a bit about the diagnosis your child received? What does it mean, and how does it affect your child’s life?
Oliver initially received a diagnosis after many attempts with specialists of infantile spasms. This is deemed usually as an emergency and requires treatment as soon as possible to negate the damage these seizures can do. It is a difficult type to pick up as the seizures are spasms that come in clusters that can mimic the startup reflex.
Oliver’s epilepsy diagnosis led to a diagnosis of cortical dysplasia on the right side of the brain, causing different seizures. After trying several medications, a diagnosis of refractory epilepsy along with developmental delay, was given.
3. How has the diagnosis impacted your family dynamics and daily routines? Have there been any specific challenges or adjustments you’ve had to make to support your child?
We have major challenges due to the diagnosis Oliver had a right side hemisphereotomy disconnecting the right side of his brain in hopes to stop the seizures. Although he still has regular seizures they have improved on what they were. He has very regular therapy including speech, OT and physio. Requires assistance with most tasks and is delayed in his age. This leads to the balancing what we do with him and how we have to parent his sister who doesn’t have his struggles making sure she feels attended to and seen/heard!
4. What kinds of treatments, therapies, or interventions has your child been receiving? How have these approaches helped your child’s development and well-being?
He currently gets OT, Speech and physiotherapy. Some we have had to compromise to be less often as trying to get the balance of family, work and also giving him time out has been something we are always assessing!
5. As a parent, what are your primary concerns and hopes for your child’s future in light of their diagnosis? How can those around you offer support during this time?
Main concern is what the future holds for him! We aim for him to be the best he can be in life whatever that ends up being! People around us help with emotional support, understanding and all help is appreciated it’s a hard gig parenting in the best of times adding these stresses into the mix definitely makes things more challenging and take a lot out of you.
