Little Khalish Bin Khairul was just 3 months old, when his mum Suzana Bin Suhot noticed that his right ankle was swollen and he had a fever.
He was also crying a lot.
Says Suzana, “As a baby, he was unable to express his pain. When we first brought him to the pediatrician, it was originally diagnosed as an insect bite and he was prescribed lotion to reduce the swelling.”
“After that, we decided to bring him to a masseuse (for infants) to check if his ankle was sprained and offer some relief. However, we were also advised that there were no issues with his ankle.”
Gradually, they noticed that Khalish was unwilling and unable to straighten both legs, as the inflammation had also affected his knees. His fever had worsened, and by then, he had developed a rash.
Mummy Suzana took him to the chiropractor and on the second visit, the therapist eventually recommended that she visit a pediatrician at Mt Elizabeth Hospital.
It was there that the diagnosis was confirmed.
Khalish was diagnosed with Juvenile arthritis when he was just 5 months old.
A child’s struggle with juvenile arthritis in Singapore
Little Khalish was eventually referred to Dr Elizabeth Ang at NUH, where he continues to receive treatment.
We asked Suzana how the diagnosis was confirmed, and what tests were needed. She tells us, “When he was around 6 months old, Khalish had to go through blood tests, urine tests, X-rays and MRI at NUH.”
“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 inflamed. He also had to undergo a minor surgery – incision at his right ankle to extract tissue for biopsy. He also had an incision at his groin to extract lymph nodes for testing.”
And once the diagnosis was confirmed, what treatment was done?
Suzana reveals, “To reduce inflammation, Khalish had to take oral steroids and daily injections for about 1 month.”
“As a mother, it was heartbreaking for me to see all the marks over his legs. These steroids helped to stop the inflammation but it proved to be a short-term solution as the inflammation and swelling returned. He had to be prescribed stronger drugs to manage the condition.”
“When Khalish was almost 1 year old, he was also injected with steroids in his knees to further manage the inflammation and to help him learn how to walk. He also visited physiotherapists twice a week.”
“Despite his condition, I am very thankful that he was able to walk after 2 months of practice.”
“Today, Khalish is on biologics (Enbrel). Biologics has proven to be a very effective medication. This is administered via injection and he takes it once every 2 weeks.”
“This is a huge improvement when 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.”
How is Khalish now? Is he able to do things normally? What medication does he have to take? Does he still need follow-up checks?
Suzana tells us, “Contracting Juvenile Idiopathic Arthritis at an early age meant he was unable to crawl when he was a child, however with physiotherapy he has overcome this and today, he can walk, run and jump like most children.”
Khalish is now 4 years old, “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.”
“To manage his condition, Khalish returns to the clinic to continue with his biologics (Enbrel) injections once every 2 weeks.”
“While, his 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.”
Is treatment very expensive? How do you cope with the expenses?
“Treating juvenile arthritis is an expensive endeavour”, admits Suzana.
“We faced financial difficulties and we were not able to use our Medisave for Khalish’s condition. As an estimate, we have spent over $50,000 on Khalish’s medical expenses so far. This doesn’t include hospitalisation and consultation costs.”
“Currently, I am spending about $500 a month on Khalish’s biologics medication.”
“I had to leave my job to take care of Khalish and my husband’s salary was not sufficient to cover the medical expenses”, says Suzana, who previously worked as patient service assistant at Changi General Hospital. Her husband works as a safety coordinator. Khalish is their only child.
“To cope with the medical expenses, we had to take loans and also used credit cards in order to pay back the expenses in installments. In the first year of Khalish’s diagnosis, we even had to rent out our apartment and stay with our parents.”
Suzana is thankful for the help she gets through the National Arthritis Foundation (NAF).
Recently, CapitaLand, through its philanthropic arm, CapitaLand Hope Foundation (CHF) has donated S$250,000 to the National Arthritis Foundation Singapore (NAF).
The donation will go towards the CapitaLand-NAF Juvenile Arthritis Fund that will support the treatment for about 40 children with Juvenile Idiopathic Arthritis (JIA) from low-income families, over the next four years.
“I am currently receiving financial assistance from NUH through NAF. The S$250,000 donation from CapitaLand to NAF will not only be helpful to me and my family, but also to many other families in Singapore who need financial assistance to manage the illness. “
What advice would you like to give other parents on this condition?
Says Suzana, “Juvenile arthritis is a disease that can be managed and treated. However, the journey to full recovery may take a long time, so it is important not to give up. Treatment is also costly so parents managing the condition should seek help. “
Thank you, Suzana for sharing your experience with us and creating awareness. We hope little Khalish stays healthy and continues to fight these battles in his life like a warrior.
Juvenile arthritis in Singapore: What you need to know
Dr Elizabeth Ang, a Consultant, Division of Paediatric Allergy, Immunology & Rheumatology, National University Hospital and Assistant Professor in the Department of Pediatrics, National University of Singapore tells us more about Juvenile Arthritis.
How common is Juvenile Arthritis in Singapore and what age group is generally affected?
Juvenile Idiopathic Arthritis (JIA) is the most common form of chronic arthritis in kids. There are about 500 children with JIA in Singapore.
Typical age range is 2 to 16 years old. The youngest patients are infants, but this is rare. Earliest onset witnessed was 4 months.
What are the causes of Juvenile Arthritis?
We don’t know the exact cause of arthritis, which is what the term “idiopathic” (in Juvenile Idiopathic Arthritis) means. Scientists are still looking for the causes of juvenile arthritis.
It is most likely an autoimmune disease. This means that the body’s immune system, which is meant to fight off infections, starts to attack its own healthy cells and tissues.
In juvenile arthritis, the body creates inflammation in joint(s) where it doesn’t need too. This means that the white blood cells produce chemicals that harm the lining of the joint.
There is no proof that diet, allergies, stress, vitamin deficiencies are the cause of JIA. There is a genetic predisposition to JIA, but genetic markers alone cannot predict who will get arthritis.
Scientists believe that a trigger, like a virus, can set off the disease process in children with the genetic tendency.
What are some common signs and symptoms of juvenile arthritis?
The most common symptoms of juvenile arthritis are joint swelling, pain, and stiffness of the joint. Any joint may be affected, but the knees, hands, feet are most commonly affected.
The symptoms are usually worse in the morning, after prolonged sitting or a nap. Not all children with juvenile arthritis will have the same symptoms.
Some symptoms are specific to a subtype of JIA. Symptoms may change from day to day, or even within the same day. Children will have times when the symptoms go away (remission) or get worse (flare).
Other signs may include:
- Limping in the morning
- Clumsiness, reduced physical activity
- High fever and skin rash
- Swelling in the lymph nodes and other parts of the body
- Sometimes, the affected joint may feel warm
How is diagnosis confirmed? What are the treatment options in Singapore?
Arthritis is diagnosed based on history (what the patient tells doctors) and a physical examination. X-rays may indicate the severity of disease.
An ultrasound or MRI scan may help to confirm the diagnosis. Blood tests are not useful for diagnosing arthritis and the result may only be abnormal if there is widespread joint involvement. They are done only when a child is diagnosed with arthritis to get clues to the prognosis.
Non-steroidal anti-inflammatory drugs like ibuprofen naproxen are used in arthritis for their anti-inflammatory effect, and the reduction of pain is one indication that the inflammation is subsiding.
Many new drugs have been developed in the past 15 years which allow children to get good control of their arthritis with fewer side effects. These drugs, known as biologics, must be given as injections or infusions.
New biologics have been approved in the last 5 to 10 years, including a class of medicines that can be given orally. Some of the newer biologics are given less frequently, which means fewer injections for the children.
Is there a permanent cure? Does this condition get better/ worse in adulthood?
There are many medicines available to treat arthritis, which may be eaten, or injected. Injection medicine can be given directly into the affected joint (usually if a few joints are affected), or into the muscle or just under the skin.
The latter method is usually used if many joints are affected, or if initial oral medicines don’t work or if the arthritis is very bad.
How does this condition affect a child’s normal activities like walking, playing, going to school etc? Does it have any affect on the child’s growth and development?
As arthritis causes pain and swelling, the child would not want to use the joint or joints that hurt. If the condition goes undetected and the joint is not used, the bone and muscle near it will become smaller and weaker.
Juvenile arthritis can also cause limb-length discrepancy in children or impair the growth of the joint in general. Inflammation that starts earlier has a longer chance to cause damage, compared to if the inflammation that started later in life in a joint that has finished growing and developing.
Movement and activity are vital to a child’s development, whether in the area of the brain, motor, muscle, coordination and balance. This in turn affects a child’s confidence and social skills.
How can patients manage the condition?
Patients are advised to maintain a healthy, balanced diet for overall good health and to prevent obesity. Being overweight will put additional stress on the joints.
Once the arthritis is under control, the child should be allowed to do all the physical activities and sports he wants. In fact, regular physical activity will help to reduce the pain of arthritis and allow the child to develop strong bones and muscles.
Also READ: What you need to know about primary immunodeficiency disorder in children
