A mother’s crusade to save child from pain

Lifestyle – Judy Murphy meets a woman who battled hard to identify her daughter’s condition that left doctors baffled

For years Jackie Ffrench was sick telling people, including those in the medical profession, that there was something wrong with her daughter, Misha. The usual response was that she was simply an overly protective mother.

One person even remarked that she had Munchausen’s Syndrome on Misha’s behalf – that’s a condition where someone pretends to be ill to get extra attention.

But Jackie knew in her gut that Misha, who is now 11, had a problem, something that was there from babyhood.  – she was so weak that she was unable to open the door of their house in Renmore, tie buttons on her clothes, or hold a pen properly when learning how to write.

“I was watching her slowly falling apart on me,” says Jackie over tea in their cosy living room. She and Misha’s father are divorced but have worked together to try and get care for their daughter, a happy, sociable 11-year-old.

They went to doctors and specialists who examined Misha and took blood for tests – all of which came back negative. The medics here in Galway were excellent and sympathetic, but no diagnosis was forthcoming.

Misha suffers from Juvenile Arthritis (JA), one of a 1,000 children in Ireland with the condition, which occurs when a person’s immune system starts attacking their joints. But the medics in Galway didn’t know that juvenile arthritis doesn’t necessarily show up in blood tests. They are used to dealing with adults and the process is different, says Jackie.

“When we look back, the signs were there for years but were left undiagnosed,” she recalls. “Misha was a slow walker and she didn’t crawl, she bum shuffled. She’d have unexplained accidents and constant pain but that was all put down to viruses.”

From the age of five, Misha had loads of injuries, with her left side being more problematic than her right. She is tall for her age, so some experts diagnosed ‘growing pains’. It wasn’t.

Her parents treated her with acupuncture and kept her diet dairy free, which helped with the symptoms. But the underlying problem was not being treated.

They were constantly “in and out of A &E with injuries and in 2012 Misha had a very bad fall in ballet”, recalls Jackie. “The doctor said it was a simple sprain and she’d be better after a few days. But she spent 12 weeks on crutches with torn ligaments.”

Just before that, Misha suffered a hairline fracture on her elbow and she damaged the elbow again shortly after her ankle had healed. One helpful person suggested that maybe she was “a bit clumsy”.

By then, Misha’s grandmother pointed out that the young girl was very like Jackie’s sister Bernie, who had suffered from juvenile arthritis. Still, there was no diagnosis.

On their 11th visit to A&E an observant nurse pointed out that there had to be an underlying cause. Misha’s bloods were taken again.  Again, the results were negative and there was no indication of inflammation, although she suffered from other illnesses, all auto-immune related.

From second class Misha’s handwriting had not improved. She had no energy and by last year, it took her two and a half hours to do her homework. At times she couldn’t sleep and at other times, she couldn’t stay awake.

In late 2013, Misha’s hand “was killing her and her toes were starting to turn in”. Jackie had had enough. She rang Merlin Park and spoke to an orthopaedic specialist. He examined Misha in November and suggested arthritis. There were more blood tests and an ultra-sound scan – again the bloods came back clear. However, the ultra-sound showed hotspots of active disease and scarring from previous inflammation. By then Misha was depending on Calpol, Nurofen and anti-inflammatory cream to try and keep the pain at bay. And not very successfully, despite her high pain threshold.

For more, read this week’s Galway City Tribune.