Arthritis in children
Published on 01 October 2009
It’s difficult to predict how childhood arthritis will pan out. Arthritis Today looks at new research which could improve prognosis, and talks to the parents of three youngsters whose arthritis is at very different stages.
When a child is diagnosed with arthritis, their parents are desperate to know the answer to the questions: “What will happen to my child in the future? Will the arthritis spread to all her joints? Will she ever be able to lead a normal life?”
Unfortunately, doctors can’t currently give worried parents they answers they crave because there is no way of predicting at the time of diagnosis what the likely prognosis will be.
Dr Madeleine Rooney, a paediatric rheumatologist at Musgrave Park Hospital in Belfast, knows only too well the frustrations that this can cause for both parents and clinicians.
Dr Rooney says:
"Not knowing how the disease will progress leads to uncertainty, which is very distressing for children and families who have to wait, perhaps for years, to see how their arthritis develops. It is also very difficult for doctors who have to wait before they can start the most effective treatment. At the same time it would be wrong to treat all children with powerful treatments if their disease would not need it in the future.”
Juvenile idiopathic arthritis (JIA) is an inflammatory form of arthritis affecting one in a thousand children and teenagers, between the ages of 6 months and 17 years.
The difficulty is that there are many subtypes of the condition. The classical features of JIA are joint swelling, with pain and stiffness, and sometimes severe anaemia and tiredness. For other children only a few joints be affected, while for others the disease gradually spreads to affect many joints within months of the disease starting. In time a number of these children will develop significant joint destruction, which is irreversible.
While drug treatments such as methotrexate and anti-TNF therapy work well in most children doctors are understandably cautious about giving young children such powerful new drugs if there is a chance that they don’t actually need them. By the same token, though, waiting to put the children on those drugs means that those with severe disease will suffer unnecessarily.
Now Dr Rooney, who is also a senior lecturer at Queen’s University, Belfast, and a team of researchers, believe they might have found a way out of this dilemma.
With funding of £282,175 over three years from the Arthritis Research UK, they are hoping to develop a new way of predicting the outcome of disease with a simple blood test.
“In a pilot study we identified a number of proteins in the body fluids of children measured at the beginning of the disease that can correctly predict disease outcome at two years,” Dr Rooney explains.
“The purpose of this study is to confirm these findings in a large group of children in Northern Ireland and also in a group of children from the US. If we confirm our findings we will be able to start better treatments earlier.”
The team will look to see whether these proteins are present in the joint tissue, which they believe is an important site where inflammation begins. They will also examine the blood of affected youngsters. If they can find these proteins in the blood they can develop a simple blood test to predict the outcome of arthritis.
Up to 80 children in Northern Ireland will be recruited and a similar number from the US to take part in the study, which has just started.
The study was instigated by doctors asking parents of children with arthritis in Northern Ireland what were their main concerns about their child’s condition.
Several expressed concerns that their child had to have steroid injections under general aesthetic as their child was frightened of the anaesthetic, and hoped that they would not have to undergo that too often. Parents of children with many affected joints wanted to know whether they would response to powerful drugs such as anti-TNF therapy, and whether their child’s disease would stay settled if the drugs were stopped, as their child did not like taking the drugs, and and parents feared the side-effects.
Dr Rooney is hopeful that these feared will be allayed and their questions answered more easily if their research bears fruit.
"Our study could minimise the stress on families, and cut the costs to the NHS by reducing visits to specialists, theatre time and stays in hospital,” she adds.
The teenager with severe arthritis
For 11 of his 14 years Christopher Waite from Tonypandy in South Wales has known little but a life of pain.
Diagnosed just after his third birthday, Christopher’s JIA is so severe that despite the advent of numerous new therapies, his doctors are still struggling to control the disease. Christopher has been in a wheelchair for the past 6 months, and has only managed to attend school for one day so far this year.
He is one of the unlucky few whose condition cannot be controlled by any of the anti-TNF therapies, although when he was six, infliximab held the disease in check long enough for him to go to school almost as normal for a year. But almost overnight its effects wore off and he was back to square one.
He is currently taking tociluzumab (RoActemra) which is yet to be officially licensed. It’s a mark of the severity of his condition that doctors have been forced to try this brand new treatment, and so far the signs aren’t good; it’s not working very well and Christopher’s liver is becoming affected.
A few years ago he had a fracture in his spine as a result of the high-dose steroids, and because he didn’t grow for four years he needed to take a growth hormone to boost his stature. When the youngster was 10 he asked his mum to saw off his leg because it was hurting so much.
Despite the severity of his condition, Christopher’s mum Julia says her son is a “brick,” and it is obvious that as well as a life of pain, his life is also filled with love.
“He makes it easy for us to cope,” says Julia, who with husband Mark has two other younger children. “He never complains even though he has been through so much. Everyone loves him at school and in hospital.
"No-one knows what the future holds, and we try and take each day as it comes. But when Christopher is bad I can’t touch him because he is in so much pain. That’s one of the hardest things – I can’t be a mam to him.”
The newly diagnosed child
It’s still early days for 8-year-old Kray Milnes, diagnosed with juvenile idiopathic arthritis at the end of last year, to the astonishment of his parents Kelly and Gary.
The football-mad youngster from Sheffield had just signed up for a local under-9’s team, and his dad had only days earlier registered him for Sheffield United’s summer football camp.
All that is now on hold as doctors try to control the arthritis that continues to rack the young boy’s wrists, ankles, knees and hips.
As well as being in acute pain, Kray doesn’t really understand why he can’t play sport any more, and why his friends, who don’t understand either, accuse him of “wagging it” when he has to miss lessons.
His mum Kelly, who has three other children aged between 1 and 4, says that at first the diagnosis of arthritis, which came about 6 weeks after he developed a severely swollen knee, was a huge relief. But since that first reaction she says the diagnosis has turned her family’s world upside down.
“To be honest when we first left A&E at Sheffield Children’s Hospital, where we’d taken Kray when he was first ill, I was thinking it was leukaemia, and didn’t sleep a wink,” remembers Kelly. “Until we got to see the rheumatologist I got more and more panicky, so when arthritis was diagnosed it was a bit of a relief because it wasn’t life-threatening. It wasn’t until I got home, it began to sink in and I started to read up on it when I hit rock bottom. I was devastated. He’s such a lovely little boy. He is up most nights squealing with the pain in his joints. It is so, so hard for him.”
Kray has so far been on steroids but as more and more of his joints are being affected he is due to start taking methotrexate which his rheumatologist Dr Sue Wyatt hopes will start to control his condition more effectively. In the meantime Kelly has thrown herself into organising a football five-a-side competition in aid of Arthritis Research UK. Both Sheffield’s football teams, United and Wednesday, have donated raffle prizes, as have the local ice hockey team the Sheffield Steelers, and the local ski village.
“Arthritis Research UK’s booklets really helped me though the first couple of weeks, when I needed to find out more about JIA, and I’m also hoping the tournament will help to raise awareness of the fact that children get arthritis too,” says Kelly.
I get lots of people coming up to me and saying, ‘How can he have arthritis, he’s only a child?’ That needs to change.”
The 16-year-old leading a near-normal life
Earlier this year millions of TV viewers tuning in for the BBC’s Tonight’s the Night talent show saw Emma Dorée accompany singer Mick Hucknall on the cello, as the singer serenaded her mum Sally.
Emma nominated Sally to appear on the show as a way for the 16-year-old to say ‘thank you’ for the years of love and support that has helped her to get through the tough times endured since being diagnosed with juvenile idiopathic arthritis at the age of 4.
After years of treatment, Emma, who has just taken her GCSEs and is planning to stay on at school to take A levels, is leading a relatively normal life and has followed her mother, a music teacher who plays the piano and cello – in learning to play the piano and cello!
Emma, from Middlesbrough, was on etanercept for nearly eight years and switched to adalimumab last year, so far with good results. Although she has limited mobility, and is still much smaller and gets tired more easily than her contemporaries, she has coped remarkably well with the pain and fatigue of JIA.
Sally, who gave up work to look after her daughter and only returned to teaching two years ago, is full of praise for the youngster’s courage in facing up to her disability.
“She’s an old head on young shoulders but she’s rarely without a smile,” says Sally, who has been a regular supporter and fundraiser for Arthritis Research UK over the years. “I once said to her: ‘you seem really well and happy today.’ She said: ‘Mum, I’m in pain every day, it’s just some days are better than others.’ She is maturing into a lovely young lady and although she still has ups and downs I think we have come out on the other side. We wouldn’t have got nearly as far on as we have without Arthritis Research UK.”