From a swollen ankle and a fever, this baby boy was later diagnosed with having juvenile arthritis…

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“My son Khalish Bin Khairul is 4 and a half years old. He’s my only child, and is an energetic and cheerful boy who loves swimming and cycling.

Khalish had a normal and healthy birth. But when he was 3 months old, I noticed that his right ankle was swollen and he had a fever. He was also crying a lot. Because he was just a baby, he was unable to verbalise or express his pain.

So, we brought him to the pediatrician. He was initially diagnosed with having an insect bite – and he was prescribed some lotion to reduce the swelling.

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However, when he didn’t get better, we decided to bring him to an infant masseuse to check if his ankle was sprained. Hopefully, he would find some relief there. But after the massage, we were also told that there were no issues with his ankle.

Gradually, we noticed that Khalish was unwilling and unable to straighten both his legs, as the inflammation had also started to affect his knees. His fever had also worsened and he had developed a rash.

We decided to go to a chiropractor. On the second visit, the therapist recommended we visit a pediatrician at Mount Elizabeth Hospital. It was there that Khalish was diagnosed with juvenile arthritis and I was referred to a doctor at the National University Hospital.

I thought arthritis was condition that only affected adults and the elderly.

At this point in time, I had never heard of the condition Junvenile Idiopathic Arthritis before. It’s an autoimmune, non-infective, inflammatory joint disease. My friends and family were also unaware of such an illness.

When I was given the diagnosis, I was extremely tired and in a state of disbelief. I thought arthritis was a condition that only affected adults and the elderly.

When he was around 6 months old, Khalish had to go through blood tests, urine tests, x-rays and an MRI at NUH. As a child, he had to be sedated to keep him still for the MRI scan and the sedation was considered risky for an infant of his age.

From the MRI results, it was found that his shoulder, elbow, hip, knee and ankle were all inflamed. He had to undergo a minor surgery - an incision at his right ankle to extract some tissue for a biopsy. He also had an incision at his groin to extract lymph nodes for testing.

 

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To reduce the inflammation, Khalish had to take oral steroids and daily injections for about a month. As a mother, it was heart-breaking for me to see the marks all over his legs. The steroids helped to stop the inflammation, but it proved to be a short-term solution as the inflammation and swelling returned. Khalish had to be prescribed stronger drugs to manage the condition.

When Khalish was around 1 year old, he was injected with steroids in his knees to further manage the inflammation and to help him learn how to walk. He also visited the physiotherapists twice a week.

Contracting Juvenile Idiopathic Arthritis at an early age meant Khalish was unable to crawl when he was a child. However, with physiotherapy he has overcome this. Today, he can walk, run and jump like most children. He can pursue physical activities normally and he is doing well in school. He has even recently learnt how to ride a bicycle using only two wheels.

The medication also suppresses his immune system so he is very susceptible to common illnesses.

In terms of medication, Khalish is on biologics – genetically-engineered proteins derived from human genes. Biologics has proven to be a very effective medication that has to be administered via an injection once every two weeks.

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We’ve seen a huge improvement compared to before. When he was first put on the drug about a year ago, he had to be injected once every week, then once every 10 days.

Financially, treating juvenile arthritis is an expensive endeavour. Currently, I am spending about $500 a month on Khalish’s biologics medication. We faced financial difficulties and were not able to use our Medisave. We have spent over $50,000 on Khalish’s medication expenses so far. This amount doesn’t include hospitalisation and consultation costs.

In addition, I’ve had to leave my job to take care of Khalish. My husband’s salary was not sufficient to cover the medical expenses, so we’ve had to take loans and also use credit cards in order to pay back the expenses in instalments. In the first year of Khalish’s diagnosis, we even had to rent out our apartment and stay with our parents. I am currently receiving financial assistance from NUH through the National Arthritis Foundation (NAF).

While, Khalish’s condition is much better now, the medication also suppresses his immune system so he is very susceptible to common illnesses. He therefore needs to take care of himself and limit his interaction with other children who may be ill. If he falls sick, he is unable to take his injections and medication, and the inflammation and pain may return.

Suzana Bin Suhot, 34, is a stay-at-home mom to Khalish Bin Khairul, 4.

The CapitaLand-NAF Juvenile Arthritis Fund that was established in 2011 has been used to subsidise treatment for children aged between 6 and 14. An additional S$250,000 has been injected into the Fund this year.

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