Caring for Caden

Research offers hope to children transformed by epilepsy  
by Dana Kelly

At 15 months old, Caden Taylor was a happy, affectionate little boy who loved to play. He showed few signs, if any, of the condition that would soon take over his brain and his body.

“When you have the first seizure, it’s very frightening,” recalls Shaun, Caden’s father. “We thought it would be just a one-time febrile seizure, but it wasn’t.”

These seizures, the first signs of the form of epilepsy that would define the young boy’s life, gradually escalated to the severe end of the epileptic spectrum, sometimes occurring up to 100 times a day. His body often collapses on the ground in convulsions, which has resulted in head injuries, broken teeth and countless scrapes and bruises.

Shaun says he and Caden’s mother Angela would often lay awake at night listening to Caden breathe. Sometimes they can settle his seizures with medication; at other times, they need to rush him to the emergency room.

“You are surprised you can cope with it,” Shaun says. “It doesn’t get easier. You just get better at it. You can work on very little or no sleep.”

Caden’s condition has had an impact on every aspect of the Taylors’ lives. They lived in Salmon Arm but eventually moved to the Lower Mainland because they spent so much time at BC Children’s Hospital, visiting up to 100 times a year. They slept at the hospital, sometimes for days on end, while doctors worked to stabilize Caden.

“BC Children’s is the best place to be in when the worst things happen because the level of care is exceptional,” Shaun says.

Dr. Mary Connolly, who heads the Epilepsy program at BC Children’s Hospital, says she believes Caden suffers from Dravet syndrome, a rare genetic condition caused by a mutation in sodium channels associated with behavioural problems and intellectual impairment.

“Seizures have a huge impact on the developing brain, especially when they start in the first few years of life and if they are difficult to control,” Dr. Connolly says. “Abnormal brain electrical activity interferes with brain development. It impacts learning, attention, language development and memory.”

Epilepsy is a common but complex neurological disorder that affects one in every 100 Canadians. It is defined by recurring seizures, which happen when neurons – the nerve cells in the brain that communicate through electrical messages – are disrupted. There are several different types of seizures and many causes: abnormalities of brain development, scars from head trauma or infections, and genetic factors such as mutations in a person’s genetic makeup. 

Caden is now 18 years old but functions at the level of a three-year-old. His vocabulary and cognitive abilities are extremely limited and he must be supervised 24 hours a day. Complicating matters further, Caden is among the 30 to 40 per cent of people with epilepsy who do not respond to conventional treatments, including anti-seizure medication, a high-fat diet, vagal nerve stimulation and brain surgery.

However, Dr. Connolly believes advances in genetic testing and the development of new therapies may help to improve his quality of life.

She recently embarked on an innovative research project with neurogeneticist Dr. Michelle Demos and other colleagues at BC Children’s research institute. The team is analyzing DNA in children whose cause of epilepsy is unknown, to identify more gene mutations associated with the disease. So far, they have discovered a genetic cause in 40 per cent of the children tested.

“When you know the cause, research on new treatments will be more specific for that disease,” says Dr. Connolly.

The Epilepsy program at BC Children’s Hospital already offers comprehensive care for patients like Caden, but Dr. Connolly says monitoring them will be easier once the new Teck Acute Care Centre (TACC) opens next year.

Shaun Taylor is also looking forward to that day – and not just for Caden’s sake. As the new general manager of the TACC, he believes staff will be able to deliver the same exceptional care, but in a building designed with patients and families in mind. The 640,000-square-foot, eight-storey structure includes 231 private rooms and family zones to allow parents to stay close to their children during treatment.

“It’s a stressful time when you’re taking care of a sick child. You’re the caregiver and you need to take care of yourself and that’s what this facility will help you do,” Shaun says. “And all of it would not be possible without the generosity of donors.”

Donors contributed $150 million to the construction of TACC through BC Children’s Hospital Foundation. The facility is scheduled to open in November 2017.

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