Watch for the warn­ing signs

He­len O’Cal­laghan on arthri­tis in chil­dren with Down syn­drome

Irish Examiner - Feelgood - - Parenting -

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.

Newspapers in English

Newspapers from Ireland

© PressReader. All rights reserved.