Juvenile rheumatoid arthritis or JRA is also called juvenile idiopathic arthritis (JIA). JRA is described as joint inflammation and stiffness for more than six weeks in a child aged 16 or below. Symptoms can include

• fever
• redness
• swelling
• warmth
• soreness (sometimes)

There is a rare form of the disease called systemic-onset JRA or Still’s disease. The pain is accompanied by a high fever and pale pink rash that is not affected by antibiotics. Untreated or serious cases of JRA can lead to anemia and affect the heart, lungs, eyes, nerves, and bone development. 

JRA is treated similarly to rheumatoid arthritis in adults, using NSAIDs, DMARDs, corticosteroids and biologic drugs. There is an emphasis on physical therapy and exercise to keep growing children active. Today, permanent damage from JRA is now rare. Most children recover without lasting disability. Over 80% of children can lead normal lifestyles after recovery. As a guardian or caretaker, here are ways to help children deal with JRA:

Be prepared to answer questions

If your child has questions about their disorder, answer them in an age-appropriate way. Different children process things differently. Your answers should help the child understand what they need to know without confusing or alarming them. Be as truthful as possible. Lying to your child, or knowingly deceiving them, can cause them to lose trust in you and affect their morale.

Advocate for the child

It is best to work with the child’s paediatrician or rheumatologist during their treatment. You can help by tracking symptoms and asking the doctors questions about their care. Some things to note include:

• changes in symptoms, such as temperature, pain, or a rash. If the child has developed a high fever and rash that antibiotics does not affect, contact doctors immediately.
• any side effects from medication
• if the child is getting better, staying the same, or getting worse.

You may also want to ask the doctor about

• how much physical activity the child can or should have
• how to dose the medicine
• any dietary restrictions
• what you can do at home to ease pain or make things easier for the child to go about their daily activities

Hospital Selayang has a dedicated paediatric rheumatology department. Click here to find out more.

Invest in assistive technology and aids

Children with JRA may have problems with their balance, motor skills, and movement. Braces or splints might be needed to help them walk.

Foam pads can be wrapped around objects like forks, spoons, toothbrushes, pens and pencils to make them easier to grip.

Provide emotional support

Children and teens with JIA are more likely to get depressed because they are living with a chronic disease. Young children might be confused about the pain, or why they feel bad. Older children may be more affected by a loss of freedom or being unable to hang out with friends.

Having a strong support system of friends and family can provide emotional support during tough times. Therapist and psychologists can also help kids with JA deal with tough emotions and teach positive coping strategies. 

Help the child under your care to understand what their condition means and how it affects their lives. Assure them that it won’t last forever. Do your best to not frighten them further, dismiss their concerns, or put your feelings before theirs.

Find support groups

Finally, it’s important to know that you and the child are not doing this alone. You can find support with others in the same situation as you. Arthritis Foundation Malaysia has a Junior Club that JRA patients can join. If there are other arthritis-based support groups in your area, you may want to enquire with them too.

Again, it’s important to remember that most children with JRA recover without permanent disability and lead normal lives. Supporting the children under your care and letting them know you are there for them goes a long way in building resilience,confidence, and hope for the future.

References

Arthritis Foundation (2020) Get active with a disability [Accessed: 10 Jun 2020] Available at: https://www.arthritis.org/diseases/juvenile-idiopathic-arthritis

Dr. C. Weng Tarng (2017) Children get arthritis, too [Accessed: 10 Jun 2020] Available at: https://mpaeds.my/children-get-arthritis/

David Z., MD (2020) Assistive Devices for Easier Living With RA [Accessed: 10 Jun 2020] Available at: https://www.webmd.com/rheumatoid-arthritis/assistive-devices

David Z., MD (2019) Treatments for Juvenile Rheumatoid Arthritis [Accessed: 10 Jun 2020] Available at: https://www.webmd.com/rheumatoid-arthritis/understanding-juvenile-rheumatoid-arthritis-treatment

David Z., MD (2019) Understanding Juvenile Rheumatoid Arthritis — the Basics [Accessed: 10 Jun 2020] Available at: https://www.webmd.com/rheumatoid-arthritis/understanding-juvenile-rheumatoid-arthritis-basics

Hospital Selayang (2019) Paediatric – SUBSPECIALTY SERVICES [Accessed: 10 Jun 2020] Available at: http://hselayang.moh.gov.my/en/service/clinical-service/paediatric/252-subspecialty-services