Finding the support you need

All parents with a child with Juvenile Idiopathic Arthritis (JIA) need support from friends, family and their community to successfully manage the demands of caring for a child with JIA, not to mention the needs of other children, pets, the house, their job and themselves! Research shows that parents who have enough social support feel happier and more confident in managing these demands. Support also helps families follow treatment plans, resulting in better management of the child’s JIA.

This information sheet suggests ideas about how to find support.

Ideas about where to find support

• Family members, particularly your parents and siblings. Even if they are not physically able to offer practical help, their emotional support is invaluable.

• Friends can offer both practical and emotional support (see below for ideas).

• Your child’s health care team, especially your doctor, rheumatology nurse or psychologist can help with information, advice and support.

• The parents of your child’s friends may be able to look after them for an afternoon so you can do other things.

• Support organisations like Arthritis Victoria can help with information, advice, courses, parent support groups, family social days and camps.
• Family Support agencies and Community Health Centres can help with in-home parenting support, parent support groups, or counselling.

• Your church or cultural group may offer both practical and social support.

What to do if you are having problems getting enough support

Some families feel they are not able to ask relatives for help, or have not received support even after asking.

This can happen for many reasons, but can result in families feeling lonely and isolated. If this is the case for you, it is especially important to develop a network of friends, neighbours and professional helpers.

However, it is also important to ask yourself if you have really asked for the support you need. Often, relatives and friends do not realise the huge pressures of caring for a child with JIA. Alternately, people may
not know how to help.

It is OK to ask for help; in fact it is essential to the wellbeing of you and your family!

Ask yourself:

• Have you explained what the difficulties are and what support you need?

• Perhaps you have explained, but you ‘spared’ them from the worst aspects, meaning that they still don’t understand that you need help.

• Even if they do understand, have you given them the impression that you are coping fine and do not need help?

Make a time to talk with key people who could support you, and explain as clearly as you can that you and your family would appreciate any support they could offer. Be prepared with ideas about specific things they could do to help.

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How is JIA treated?

Your treatment is planned just for you – it may be different for another person.

Treatment for JIA might include:

• medications to control the inflammation
• exercises to keeping the joints moving well
• splints to support the joints
• joint injections to reduce inflammation in particular joints
• pain management strategies to reduce pain and to help you cope with pain.

You will need treatment for as long as the JIA continues. Treatment may change as the JIA changes over time, but treatment is only stopped completely when the symptoms have been gone for quite a while.

Your treatment may involve a few different professionals. They are called your treatment team.

Who is my treatment team?

You and Your Parents

You and your parents are the most important people in the treatment team. Your team will work together to help you manage your JIA. You should ask about the treatments and how they work, so you can use them properly and help your team to help you.

Paediatric Rheumatologist

Paediatric rheumatologists are doctors who look after children with arthritis.

Rheumatology Nurse

Rheumatology nurses provide education, support and coordinate your treatment.

Physiotherapist (Physio)

Physiotherapists are experts in how joints and muscles work. They might give you exercises to help keep joints moving well, and to keep you strong.

Occupational Therapist (OT)

Occupational Therapists can give you splints for supporting joints and provide other aids to help you with everyday activities like getting dressed or writing.

Ophthalmologist

Ophthalmologists are doctors who specialise in eye problems.

Psychologist / Psychiatrist / Counsellor

Psychologists and psychiatrists help kids and families manage feelings about JIA, and can also help you learn to manage pain.

General Practitioner (GP)

Your GP looks after your general health. Contact your GP if you have any health concerns other than joint problems.

Pharmacist

Pharmacists dispense your medication at the chemist.

Teachers

Your teachers need to know about your condition and its treatments so they can help you at school. Your nurse educator can talk to your school if you ask for this.

Support Groups

It can be great to meet other kids with JIA. They understand what it’s like. Local arthritis foundations often have fun activity days and camps for kids with JIA.

Meeting other families who have a child with JIA can be a valuable experience for your whole family. It can help to share ideas and experiences with other families in the same situation. Local Arthritis Foundations often run support groups for parents and activities for families.

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What are the different types of JIA?

Oligoarthritis

A doctor may diagnose oligoarthritis, or pauciarticular arthritis, if four or fewer joints are affected, and it is most frequently seen in children aged about two or three years, but also in adolescents. It is more common in the larger joints, like the knees, ankles or elbows, but can also affect wrists, fingers and toes. Often a particular joint will be affected on one side of the body only. If a child has this form of JIA they are at risk of an eye inflammation called iridocyclitis, particularly if blood tests are positive for ANA. Iridocyclitis should be monitored regularly by an appropriate eye specialist, as there are no signs of redness or discomfit even when it is present. Untreated it can cause considerable damage, however most children do well when treated with eye drops. A child with this form of JIA often does well, and in most cases the arthritis disappears after a number of years. A range of treatments are aimed at minimising damage in the affected joints, and good management will often give a good long term outlook for the childs future.

Polyarticular Arthritis

Polyarticular means “many joints”. Five or more joints are affected, often in the small joints of the fingers and hands, and often those joints are affected on both sides of the body. Polyarticular JIA can also affect knees, hips, ankles, feet, shoulders, neck and jaw, and they may experience at times a low-grade fever and tiredness. A small number of children have positive rheumatoid factor in the blood, which may result in a more severe form of arthritis. Many children will recover from the polyarticular arthritis without significant ongoing effects. For some the disease will continue into adulthood, but good management can go along way towards minimising the impact of arthritis on education and career choices.

Systemic Arthritis

This form of arthritis is the least common form of JIA. As well as sore joints the child usually has fever and rash, aching limbs, and feels tired and listless. This condition may also affect the heart, lungs, liver, spleen, and lymph nodes, and anaemia and weight loss may occur. The joint-related symptoms may continue after the other symptoms have settled down. Many children with systemic JIA recover after months or possibly a year (depending on relapses), with minimal changes in joints. For others the condition will be more prolonged and recurrent, with ongoing joint problems. Good management of the fever and joint inflammation will often enable a fairly normal life to be led and minimise problems into adulthood.

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What happens to the joints in JIA?

Your body has many joints. Your leg has joints in the hip, knee, ankle, foot and toes. The joints in your arm are at the shoulder, elbow, wrist, hands and fingers. There are also joints in your jaw, neck and back.

Joints are where two bones are connected. The ends of the bones have a smooth covering called cartilage. A joint is in a kind of bag called a capsule. The inside of the bag has a special lining (synovial membrane) that makes a fluid. The fluid lets the bones move easily – like oil on your bike chain. It also protects the joint.

In arthritis, the lining of the joint becomes inflamed and thicker than normal, the capsule fills up with inflammatory cells, and the amount of synovial fluid increases. This is what makes joints swollen, stiff, hot and sore. If the inflammation is not treated, it can damage the joint, the cartilage and the surrounding bone. Muscles around the joint can become weak and the joint may not be able to move as much as usual.

On the left is a joint without arthritis. The middle knee shows an inflamed joint and the one to the right shows a joint with untreated arthritis

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Symptoms and Signs of JIA?

JIA can appear in many different ways. It mostly causes inflammation in joints and surrounding tissues.
Symptoms and signs of an inflamed joint are:

• swelling
• pain
• stiffness (especially in the morning)
• heat or warmth.

You may not have all of these symptoms in every joint that is inflamed. Sometimes the eyes can also be inflamed which is called “uveitis” (more about this later).
Other much less common symptoms of JIA can be:

• fever
• rash
• loss of appetite
• loss of weight.

How common is JIA?

JIA affects at least one young person in every 1,000 in Australia. There are at least 5,000 young people in Australia with JIA.

What causes JIA?

Your body has an immune system which fights germs from outside the body to keep you healthy. Sometimes the body’s immune system mistakes a normal part of the body for something foreign (like a germ), and starts attacking the body itself. In JIA the immune system attacks the joints. This is called an auto-immune process. We don’t understand exactly how or why this happens.

Things that do not cause JIA

• You didn’t catch JIA from someone else (and you can’t give JIA to another person)
• There is nothing that anyone did or didn’t do that caused your JIA
• JIA is not caused by being too cold or living in a cold place
• JIA is not caused by eating particular foods
• You didn’t get JIA from your parents (it is not hereditary).

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Juvenile Idiopathic Arthritis

You probably thought that arthritis only happens to old people. And now the doctor says you have Juvenile Idiopathic Arthritis (JIA)! You probably have lots of questions. This handout will give you some answers. But you’ll probably need to talk to your rheumatologist, rheumatology nurse educator and your parents as well. You may need to hear the answers several times. That’s OK.

This is about Juvenile Idiopathic Arthritis. What causes it? How is it treated? What does it mean for you?

Juvenile Idiopathic Arthritis (JIA)

Juvenile Idiopathic Arthritis (JIA) is arthritis that young people get.

• Juvenile means young people
• Idiopathic means that we don’t know what the cause is
• Arthritis is when a joint swells up, is stiff and hurts (gets inflamed).

JIA is a chronic condition

• Chronic means it lasts for a while – more than 6 weeks
• Chronic also means that treatment will make you feel better but won’t cure JIA.

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