You can get arthritis at any age. But if it starts before you turn 16 and doctors don’t know why, it’s called Juvenile Idiopathic Arthritis (JIA).
AS it does not happen often, it is understandibly difficult for most of us to relate when an “old man’s” disease affects a young child.
We are quick to assume that affected children have little more than a scaled-down version of the adult disease, even though, most of the time, their conditions are quite different from the adult disease.
Arthritis is one such example, and consultant paediatric rheumatologist Dr Tang Swee Ping wants to make sure her audience understands the difference.
“Arthritis is not just a disease of the elderly. It can also happen in children,” she says.
“(For instance), Juvenile Idiopathic Arthritis (JIA) is a group of arthritis conditions in children, but it is not a mini-version of adult arthritis. Arthritis is very different in children and in adults.”
Similar, yet different
Until recent studies convinced researchers otherwise, JIA, one of the most common forms of arthritis in children, was called Juvenile Rheumatoid Arthritis (JRA) because it was observed that children experience the same biological changes that occur in adults with Rheumatoid Arthritis (RA).
In both adults with RA and children with JIA, cells in the immune system mistake one of the linings in the joints – the synovium – for a foreign invader and attempts to remove it by attacking its cells with biological chemicals that cause inflammation.
The signs and symptoms are similar. A child with JIA or adult with RA will usually experience recurrent swollen, warm, and stiff joints. A lot of the time, these symptoms are more marked in the morning, just after they wake up.
The difference lies in the way arthritis affects children and adults.
In adults, arthritis (commonly osteoarthritis, gout, or rheumatoid arthritis) usually persist for life unless it is controlled with a healthy lifestyle or medications.
Children, however, have a 40-50% chance of growing out of childhood arthritis like JIA when treated properly, says Dr Tang.
“For some of them, the disease becomes quiet, or they don’t have attacks anymore when they grow up.”
Even so, without proper treatment, children’s bones and joints are more vulnerable to damage and deformities, as the inflammatory processes in arthritis can easily interfere with the structures that are still developing.
In the past, many were reluctant to treat their children because they thought they would eventually grow out of JIA, says Dr Tang. “But now we know that there are half of them who don’t, and there are long term implications on the child’s wellbeing, including their growth, psychological health, and employment opportunities.”
This makes it all the more important to detect and treat JIA early, though it is not always easy.
For starters, the early symptoms of JIA – joint pain, joint stiffness, and joint swelling – are not always indicative of arthritis. Other illnesses like Chikungunya infections and rheumatic fever can cause them too.
“For a child to be diagnosed with JIA, the swelling and inflammation must be there for at least six weeks,” says Dr Tang. So, if your child’s swollen joints subside after one or two weeks, you need not panic yet.
There are also instances where young children do not realise that the mild pain, swelling, and inflammation (often imperceptible to adults) is not something normal. “This is when they may cry a lot or become crankier than usual,” says Dr Tang.
Either that, or they might just opt to avoid using the affected limb or show signs of discomfort while using it. They may walk with a limp, return to crawling instead, or find it difficult to write.
“JIA is not the same for all children,” says Dr Tang. As there a few types of JIA, which progresses at different rates in children. Doctors could not tell parents what will happen to their children as time goes on. We’ll have to wait and see,” says Dr Tang.
Growing up with JIA
Although it is a debilitating disease, JIA does not affect that many. In fact it is rather uncommon. So far, doctors believe that one in 1000 children has it worldwide.
Children who have JIA often have to live with chronic pain, growth problems, and the depressing notion that due to their physical limitations, they could not participate in many of the activities their peers enjoy.
They often feel helpless and anxious, especially when they could not do the things their friends could do with ease – like run around and play, says Dr Tang.
Even things most people take for granted, like hanging their clothes up and wearing a hair clip, can be difficult.
Consultant psychologist Paul Jambunathan, who sees JIA patients mostly for pain management issues, says not only do children with JIA have to deal with their physical limitations, they need to deal with a lot of psychosocial issues as well.
When compared to their friends, they may take a longer time to do everything – from finishing their meals to completing their homework, says Dr Tang. “With time, some of them may develop a ‘sick-person’ mentality and think ‘I am sick, so I can’t do all these things’.”
To help children overcome these physical and psychological challenges, Paul says the goal is to make them competent – competent in overcoming life challenges with a positive state of mind, and – most of all – recognising their potential and limitations yet make the best out of both.
“You have to find out what you can do for your child’s mind that will boost her self esteem,” he says. Focusing on what she can do rather than what she can’t is a good place to start.
“Communication is also very important,” says Charlie Tan, an occupational therapist who works with children living with JIA.
It is only through communication that children with JIA and the people around them – their parents, siblings, teachers, doctors, therapists – can be on the same page when it comes to managing emotions and expectations. Just take for example the occasional flare-up or what Tan calls a “bad day”, ie when a child’s joint pain or stiffness worsens.
It is normal for children with JIA to have their good days and bad days, but not all of them are able or willing to complain to their parents or teachers, Tan explains.
This is when parents and teachers should pick up on non-verbal cues like tantrums or sudden crankiness and help them ease their discomfort.
“Plan activities to conserve energy but give them a choice, because when they are too tired, flare-ups can also occur,” Tan suggests.
To treat and to teach
Despite its rarity, consultant rheumatologist and Arthritis Foundation Malaysia president Dr Amir Azlan Zain is often amazed at the tremendous amount of effort rheumatologists and parents need to put forth in caring for a child with JIA.
“I’m always struck by the need to strike the balance between getting the medical intervention right, as well as getting everything else – the child’s development, his family etc – right,” he says.
The earlier treatment starts, the better the prognosis will be. “First, we should try to control their disease optimally to prevent short and long term complications,” says Dr Tang. This means the children must take their medications and follow their doctors’ instructions.
“Don’t delay your child’s treatment just because he or she appears to be able to walk, because there is a window of opportunity (about one to two years after the onset of symptoms) where interventions can effectively make a difference – after that, it is a little harder to get the disease under control,” she explains.
Besides drugs that reduce inflammation and modify the course of the disease, sometimes children will be prescribed steroidal drugs to control the disease.
This often worries parents, particularly when steroids have the notorious (but perhaps a little overemphasised) side effect of stunting growth in adolescents.
Dr Tang stresses that getting the disease under control should come first. “Generally, slow physical growth can happen due to an active JIA disease, and sometimes due to the steroidal drugs given.
“But the message is: if the disease is active and the child goes without medications, the child will not grow well too. With the disease under control, growth will resume,” she says. “We need to strike a balance between (prescribing) the least medication (to achieve) the least JIA activity.”
Treatment does not stop there. Children with JIA should also be taught appropriate exercises and daily living skills so they can be independent when they grow up. If you need some help with that, occupational therapists are the people to go to for advice.
Tan has three general tips to help protect your child’s little joints. First, avoid positions that foster deformity. Maintaining certain positions of the limbs and digits for long periods of time, like writing with a pencil or eating with a slim handled spoon, puts extra stress on the finger joints and increases the likelihood of their joints being deformed in the long term.
You can help your child by teaching her how to use pencil grips and eat with cutlery that has thicker handles (so she can grasp them without gripping too hard).
Second, make daily tasks easier for her by modifying the tools she finds difficult to use. For example, opening doors with small keys and cupboards with little handles can be tough when your child’s joints are affected. “You can give her larger keys and use bar-type cupboard handles to make the cupboard easier to open,” says Tan.
Third, teach her the virtues of good posture. The same applies for everyone, but for children with JIA it is especially important to prevent or limit deformities and maintain their range of motion.
You’re normal, you’re special
“A normal special child.” This is the message experts believe is best for children living with chronic diseases like JIA.
However, it is one of the most difficult messages for parents to convey. Just how do you convince your child that he is otherwise a normal young person, when his life with a chronic disease is so markedly different from that of his peers?
Dr Tang offers this advice, “Don’t be overprotective. We must encourage them to do things and try not to limit them. Also, we should teach them the skills they need to cope and empower them.”
With appropriate care and encouragement, every child with JIA can live a normal, special life.
This article was published in www.thestar.com.my on 7 February 2010.