Watch for the warning signs
Helen O’Callaghan on arthritis in children with Down syndrome
WHEN Áine O’Sullivan got the call from her daughter Éabha’s teacher to say the child couldn’t walk in from the yard, the Longford mum already suspected something was wrong.
She got the call last September but over previous weeks, Áine had noticed a change in Éabha, now 11, who has Down syndrome. “She stopped cycling her bike, she stopped going for walks. It was hard to get her out of bed in the morning. When she went back to school, she couldn’t put her weight on her legs — she was walking on her toes.”
Explaining that children with Down syndrome can have a high pain threshold, Áine says Éabha would respond ‘I’m fine, Mom’ when asked how she was feeling. “She was obviously in pain but she wasn’t verbalising it.”
But when Áine got that phone call from the teacher, she immediately brought Éabha to her GP, who referred her straight to Our Lady’s Hospital, Crumlin. “When she got to Crumlin, she just sat straight into a wheelchair — she couldn’t put her legs under her.”
Almost four weeks in hospital and under the care of the rheumatology department, Éabha was diagnosed with Down’s arthritis. She was prescribed steroids and the medication Enbrel, which she continues to take.
One in 50 children with Down syndrome has arthritis, more than twice that previously estimated. This was reported recently by Irish researchers in a groundbreaking study, which found children with Down syndrome are 18-21 times more likely to suffer from the debilitating disease.
The first of its kind worldwide, the study is now being expanded to define what might be driving the disease. “If we understand why the disease is more prevalent in children with Down syndrome and what’s causing it, then we can begin to look at better treatment options and ultimately a cure for the disease,” says clinical research fellow Dr Charlene Foley.
Today, Éabha — who was part of the study — is in great form. “She’s swimming. She’s doing hip hop and she’s in a drama group. She’s totally mobile and loves school,” says Áine who advises parents of children with Down syndrome, if they see a change in mobility, to push for an answer.
“You know your child best.”
National Arthritis Week runs until Sunday, with Arthritis Ireland’s Annual Research Lecture taking place tomorrow, Saturday at Trinity College Institute of Neuroscience, Lloyd Institute, TCD, Dublin 2.
Dealing with diagnosis: Éabha O’Sullivan, age 11, has been diagnosed with Down’s arthritis.