Living with arthritis since four months old

Khalish Khairul seen here with his parents on January 19, 2018. — TODAY pic
Khalish Khairul seen here with his parents on January 19, 2018. — TODAY pic

SINGAPORE, Jan 28 — He has yet to turn five, but Khalish Khairul has endured painful arthritic joints since he was a baby.

The preschooler is among the 500 children in Singapore living with juvenile idiopathic arthritis (JIA), the most common type of chronic arthritis in children that causes persistent joint pain, stiffness and swelling.

Diagnosed at four months old, Khalish is one of the youngest patients here to have developed symptoms in infancy.

The condition typically occurs between the ages of two and 16, and is rare in infants, said Dr Elizabeth Ang, a consultant in the Division of Paediatric Allergy, Immunology and Rheumatology at the National University Hospital (NUH). The NUH, where Khalish is presently receiving treatment, sees about 70 to 80 children with juvenile arthritis.

“It was hard for us to believe (the diagnosis). We’d never heard of babies or children with arthritis, which we thought affected only the elderly. We were so worried he could not be able to move around like other kids,” said Khalish’s father Khairul Ismail, 34, who initially feared his son would not be able to learn to walk or run.

Khalish’s young life has revolved around hospital visits, blood and urine tests and scans, as well as daily doses of medication and multiple injections.

When asked if his joints and the injections hurt, the bubbly boy stoically replied: “When I was little, (I cried) a lot. But I’m a big boy now, so I don’t cry anymore.”

The first year after the diagnosis was the toughest period for his parents, who struggled to care for him.

As a baby, he cried non-stop and never learnt to crawl due to his stiff and painful joints. At around six months old, he had to undergo daily injections. Khalish also received steroid injections in the knees to control the inflammation and help him learn to walk.

“As a mother, it was heartbreaking for me to see the (injection) marks all over his legs. There is currently no support group in Singapore available for young children with juvenile arthritis, so we had no one to turn to for moral support,” said Ms Suzana Suhot, 34, who quit her job as a patient service assistant to care for him.

“When he was first diagnosed, there weren’t any suitable medications for him as he was just a baby. The doctors had to make an overseas call to check. They’ve never met a child with juvenile arthritis as young as Khalish.”

Cause is unknown for most cases

Doctors continue to be baffled as to why some babies and children get arthritis. It is most likely an autoimmune disease, which means the body’s immune system mistakenly attacks healthy cells in the joints – most commonly in the knees, hands and feet – but there is no way to predict who will get it, said Dr Ang.

Whilst genetic factors can explain 10 to 25 per cent of cases, the rest are of unknown causes, said Dr Liew Woei Kang, consultant paediatrician at Paediatric Allergy, Immunology and Rheumatology at SBCC Baby and Child Clinic.

In children with a genetic tendency, scientists believe that a trigger, such as a virus, can set off the disease process, said Dr Ang.

Recent research has also linked antibiotic use in childhood to an increased risk of developing juvenile arthritis.

In a study published in Paediatrics in 2015, researchers suggested that antibiotics exposure is associated with newly diagnosed JIA, possibly through changes in the microbiome (microorganisms in the human body) which plays an important role in regulating the immune system. However, the study is an observational one and no cause or effect has been demonstrated, said Dr Liew.

In babies and children, symptoms are not always clear-cut.

Before Khalish was diagnosed, a paediatrician had mistakenly attributed his swollen ankle to an insect bite and prescribed lotion to reduce the swelling.

Besides joint swelling and stiffness that are usually worse in the morning, after sitting or a nap, other signs may include limping, clumsiness, high fever and skin rash, as well as swelling in the lymph nodes and other parts of the body, said Dr Ang.

In babies, parents may notice delayed motor milestones, frequent crying and pain when they are moved.

Not a lazy child

Due to the disease’s chronic nature, the pain may not be severe enough to make them cry but can be distressing enough to affect their activity and mood, said Dr Ang.

“Younger children may have no way of communicating this, and appear unwilling to move. (They are) sometimes labelled as lazy,” she said.

Not all children experience the same symptoms. “Some symptoms are specific to a certain subtype of the disease, others may change from day to day, or even within the same day. There will be times when the symptoms go away or worsen,” said Dr Ang.

Left untreated or uncontrolled, juvenile arthritis can damage a child’s physical and social development. Children experiencing pain and swelling often would not want to move the affected joints, which can cause the bone and muscles near it to become smaller and weaker, Dr Ang said.

Movement and activity are vital to the development of a child’s brain, motor skills, muscles, coordination and balance, and poor development in these areas in turn affects a child’s confidence and social skills, she added.

Juvenile arthritis may also lead to other complications like limb-length discrepancy in children as their growth plates are affected, said Dr Liew.

The availability of new group of drugs, known as biologics, have allowed children like Khalish to get their conditions well-controlled. Administered as injections or infusions, these biological agents help block harmful responses from the body’s immune system that lead to juvenile arthritis symptoms.

“With biologics, doctors can now control close to 100 per cent of JIA. When treated early, complete remission (no symptoms on doctor’s physical examination and normal blood tests), often with medication, is possible,” said Dr Ang.

New drugs are costly

However, the treatment remains out of reach for many families. “(Biologics) are very costly Cost varies as the dosages and cost are calculated according to the child’s weight,” said Dr Liew.

Depending on the severity of the disease, the cost of biologic medication may range from S$1,000 to $4,000 (RM2,963 to RM11,850) per month, said Dr Ang.

Khalish is currently on biologics and his parents have spent over S$50,000 on his medication alone and racked up debts for his medical expenses.

“Treating juvenile arthritis is an expensive endeavour. We faced financial difficulties and we were told that we are not able to use our Medisave for Khalish’s condition,” said Ms Suzana, who is currently receiving financial assistance from the NUH through the National Arthritis Foundation Singapore (NAF). The family is one of beneficiaries of the CapitaLand-NAF Juvenile Arthritis Fund, which was first set up in 2011 to subsidise treatment for children with the disease. The CapitaLand Hope Foundation, CapitaLand’s philanthropic arm, recently donated another S$250,000 to the NAF to support treatment for about 40 children from low-income families over the next four years.

Mr Khairul currently earns round $3,000 per month as a safety coordinator and the couple is expecting their second child, due in April.

Ms Suzana said the financial struggle is worth it when she sees how active and well her son is after being on the medication. He can run and jump, and enjoys physical activities like riding a bicycle and splashing about in a swimming pool.

His parents hope that he can beat the disease and eventually live a normal, healthy life.

“Khalish has been subjected to so many medications since he was a baby, and we will never know what side effects may happen. Hopefully, he can go off medications eventually when he is older,” said Ms Suzana. — TODAY

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