Updated 19 January 2017

Hidden pain: juvenile arthritis

Joint pain in children may not just be growing pains, but an often-misdiagnosed disease – juvenile arthritis.


By KARENA DU PLESSIS for YOU Pulse magazine

Many children suffer unnecessarily from the pain and deformity of arthritis – either because they’re not diagnosed in time, or because they’ve been given incorrect medication.

Shané’s story
She was three years old when she began to complain of sore ankles. Soon the pain in the toddler’s joints got so bad she’d often burst into tears. Shané Kleynhans’ parents took her from GP to paediatrician to GP. Numerous tests were carried out but doctors were baffled.

Then a paediatric rheumatologist diagnosed Shané and finally the Kleynhans family of Durbanville in the Western Cape knew what they were facing: arthritis.

The older kind of arthritis drugs helped only up to a point and the little girl’s knees were so sore and swollen that she couldn’t get up from the floor or out of the bath on her own.

“Shané was treated with methotrexate and cortisone – the standard arthritis medication – but she struggled with side effects,” says her father, Carel. “It’s difficult to explain to a child she has to continue taking something that causes nausea and makes her vomit. But we struggled along.”

Breakthrough treatment

Then when she turned nine her whole life changed in the blink of an eye. Within a month after an arthritis specialist prescribed a new and expensive drug known as Enbrel, her joints stopped aching. Soon the swelling around her knees disappeared - Shané could move around with ease, and once again play outside with other children.

Best of all, Shané started growing again after stopping the initial drugs. She has grown more than 10 cm in the past year and at almost 11 she’s now the same height as her friends.

“This has been a huge boost to her self-esteem,” Carel says. “We recently went to the awards evening at her school and she was one of the top 20 students. We were thrilled.” Shané is a shining example of how arthritis in children can be brought under control with this new drug.

What is arthritis?

Arthritis is a disease that causes pain and decreased mobility of the joints. The word ‘‘arthritis’’ literally means joint inflammation: arthro = joint and itis = inflammation.

What is juvenile arthritis?

This chronic condition causes inflammation in one or more joints and sets in before the age of 16.

It’s difficult to establish how many children are affected. Figures from Australia indicate one in every 250 children may have the disease and even toddlers as young as 18 months can develop it.

There are several kinds of juvenile arthritis. Although they all have joint inflammation in common the symptoms differ and they may therefore require different approaches when it comes to treatment.

The most common type affects four or fewer joints and sometimes the eyes as well. It often starts during infancy but may be outgrown.

Robert’s story
Robert Grant (12) of Claremont, Cape Town, suffered from this kind of juvenile arthritis. He became unwell when he was 10 months old, but was correctly diagnosed only eight months later.

The disease damaged his eyesight and he recently had an operation to correct a detached retina. He now uses Enbrel and can hardly remember the pain he once experienced, says mom Veronica.

Other forms of juvenile arthritis
Less common kinds of juvenile arthritis are those that affect more than four joints, or that affect the knees and back and are associated with the skin condition psoriasis.

One in 10 children with arthritis suffers from a fourth kind of juvenile arthritis which, apart from high fevers and skin rashes, may often cause inflammation in various organs. Inflammation of the cardiac sac can be fatal.

Because fever and a skin rash don’t initially look like arthritis doctors often think children with these symptoms are infected with some or other strange virus.

Lizzy’s story
This is what happened to Lizzy Townsend (3) from Camps Bay, Cape Town:
‘‘When Lizzy developed a high fever and rash in December 2006 doctors assumed it was a viral infection,” says Bev, the little girl’s mom.

“We treated the fever symptomatically but the next three months were a nightmare because every afternoon it shot up sky-high. It rose to over 40 °C and remained there for a few hours before dropping again.

‘‘As time went by the rash also changed and came and went along with the fever. The only way to find out what was wrong with Lizzy was through a process of elimination.

‘‘After many blood tests and a bone marrow biopsy doctors finally established she was suffering from systemic juvenile arthritis.’’

Trigger not known

No one knows why some children develop arthritis. So far all researchers have managed to establish is that some children have an inherited susceptibility.

When these children are exposed to certain diseases the arthritis gene is activated, but it isn’t known which diseases act as triggers. It may also be the body’s immune system that ‘‘switches on’’ the arthritis gene.

This ‘‘switching on’’ of genes leads to a series of inflammatory reactions in the membranes around joints. A variety of proteins are released during the inflammatory process, causing them to become red, sore and swollen.

This reaction eventually causes so much damage to the membrane that the bones of the joint start grinding against one another. Later it starts attacking the bone itself. No wonder the affected joint hurts with every movement and the pain continues to increase.

If this systematic damage is not halted the bone tissue changes shape and the joints (mostly the knees, back, hands and feet) become crooked and deformed. The earlier the damage can be contained the better.

Juvenile arthritis easily misdiagnosed

Children’s adaptability may help to make their life easier but could also be an obstacle to early diagnosis.

Kids adapt quickly and effectively to adverse conditions, which may cause a delay in diagnosis, says Cape Town rheumatologist Dr Ingrid Louw. ‘‘So while they may start off complaining of a stiff knee they somehow manage the pain and their parents think the problem has disappeared. As a result they don’t get the appropriate medical help.’’

Watch out for these symptoms

  • Juvenile arthritis is often dismissed as growing pains, a common occurrence that affects many children and peaks around the age of four or five. But growing pains occur at night and usually behind the knee or in the leg. Stiffness in the neck, hips or other joints can also occur.
  • Rashes may suddenly appear and disappear in different areas.
  • High fevers that spike in the evenings then disappear are characteristic of systemic juvenile arthritis.
  • Joints may suddenly swell and remain enlarged.

(This is an edited version of a story that originally appeared in YOU Pulse / Huisgenoot-POLS magazine, Autumn 2008. Buy the latest copy, on newsstands now.)

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Ask the Expert

Arthritis expert

Professor Asgar Ali Kalla completed his MBChB (Bachelor of Medicine and Bachelor of Surgery) degree in 1975 at the University of Cape Town and his FRCP in 2003 in London. Professor Ali Kalla is the Isaac Albow Chair of Rheumatology at the University of Cape Town and also the Head of Division of Rheumatology at Groote Schuur Hospital. He has participated in a number of clinical trials for rheumatology and is active in community outreach. Prof Ali Kalla is an expert in Arthritis for Health24.

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