PROFILE
4
EPILEPSY AWARENESS IS THE ANSWER,
so ask the questions
Raising children is stressful at the best of times, add to that a diagnosis at eight weeks old and it raises more questions than anyone can answer at that point in time. ANNA MCGUINNESS spoke to one mother whose search for answers and support led her to become an epilepsy advocate at HeR woRst, Lockington teenager Kaitlyn Lewis was suffering through 120 seizures a day, with no reprieve. Not even her parents could tell when one stopped and the next one began. Kaitlyn was born with a rare brain condition — agenesis of the corpus callosum — meaning the nerves that connect the two sides of the brain never formed, leaving her non-verbal and unable to walk. Her mother Carolyn knew something wasn’t right before the doctors delivered the diagnosis at eight weeks old, she was having trouble feeding and Kaitlyn wasn’t putting on weight. Carolyn’s first reaction was shock. What was this condition, and what did it mean for the rest of Kaitlyn’s life? Now 16, Kaitlyn is epileptic — one of many affects of the agenesis. She suffers through seizures triggered by
MARCH 2020
anything from tiredness to feeling unwell. “Her first seizure was when she was 12 months old, by the time she was three she was having 120 a day, we lived with it all that time,” Carolyn said. Kaitlyn has intractable epilepsy which means the seizures cannot be controlled by medicine, however a particularly bad run led to doctors finding a way to make them less frequent. “In 2009 we got a new neurologist after she’d been airlifted to hospital in Melbourne, she spent a week having seizures and they couldn’t stop them,” Carolyn said. “The neurologist put her in an induced coma for three days to stop them and came up with a cocktail of epilepsy medications. “Since then we’ll usually get three seizures a week, apart from the odd day where she might have a lot.” Kaitlyn experiences generalised tonic-clonic
seizures which don’t last long but can be continuous, the risk is she vomits when she comes out of a seizure, which can put fluid on her lungs and becomes life-threatening. The condition has had a profound impact not only on Kaitlyn but also her family, including her five older brothers, something Carolyn is very aware of. “My kids have missed out on so much, with school there’s been times when I haven’t been able to buy their school books for them because Kaitlyn’s been so unwell and we’ve had to go to hospital,” she said. “They’ve been kept in at school because their readers haven’t been done or they didn’t have books, and even mentally, Kaitlyn was in ICU when my son had his VCE exams. “My husband had to take time off work to look after the kids and sometimes we’d be in Melbourne for a month at a time.”
