Many people in the wider community believe that arthritis is a condition that people only get as they age. They don’t know that there are 100 different conditions that fall within the scope of arthritis, and that it can affect all ages.
Nor do they realise that kids get arthritis too. In fact, 1 in 800 kids in Australia have arthritis, known as Juvenile Idiopathic Arthritis or JIA. This makes it is as common as Type 1 diabetes in children under 16 years of age in Australia. Living with arthritis and other rheumatic conditions can be challenging not only for the child or young person affected, but also for their families and friends – awareness, support and understanding is vital.
What is JIA & what are the symptoms?
Juvenile idiopathic arthritis (JIA) is the name given to a number of types of arthritis that occur in children. The name comes from: Juvenile: referring to children under the age of sixteen years. Idiopathic: meaning it has no known cause. Arthritis: conditions that cause joint inflammation and pain.
The main symptoms include:
> joint pain, swelling, tenderness, stiffness, redness and warmth
> fatigue (tiredness and lack of energy), fevers, loss of appetite or weight, and generally feeling unwell
> skin rashes
> inflammation of the eyes (uveitis) and other organs of the body in some forms of the disease.
A number of tests are required for diagnosis and ongoing management. To learn more about the condition, practical tips and resources for parents & carers download the detailed booklet, Finding Out your Child has Arthritis.
Your child has JIA – Practical Tips for Parents
If you’re child has JIA, here are some practical tips for managing life for your child and family.
> Be positive – Shift focus away from what can’t be done or is difficult to do. Encourage a ‘can do’ attitude.
> Encourage independence – Everyday tasks can be made easier with a little planning:
- If there’s morning stiffness, lay clothes out the night before.
- Velcro fastenings, large buttons and looser styles can make getting dressed easier.
- Specially adapted kitchen and eating utensils are available as are modified pens, pencils and paint brushes.
- Lever taps can make turning water on and off easier and bathrooms can be readily modified. Hand and grab rails can also be installed.
- A range of adjustable furniture is also available.
> Get ready for change – JIA can be marked by painful flare-ups. If this happens, current treatments might need to be reviewed, medications changed, and splints or extra physiotherapy recommended.
> Start the day a little later – JIA can interfere with early morning activities.
- Starting the day with a warm shower can ease stiffness as can placing a hot water bottle in bed 30 minutes before it’s time to get up.
- Tasks attempted first thing might be easier later in the morning.
- Catching up with friends in the afternoon can be preferable to spending a whole day at home alone.
> Move it or lose it – Strength and mobility is built and maintained through movement.
- Swimming and aquarobics are excellent as is just paddling in warm water, tai chi, introductory yoga or even air guitar on slower days.
- Bending and stretching every joint every day is recommended as is avoiding being in one posture, especially sitting, for too long.
- A health professional can advise if it’s safe to exercise during severe flare-ups.
> Mood and movement – Mood can be as much as an indicator of being in pain as limited or slow movement.
- Being unusually quiet and withdrawn or appearing tense or even being a bit difficult can signal pain.
- Keeping a joint such as a knee or finger bent can also show there’s discomfort.
> Diet is important – Reducing exercise and everyday physical activities can lead to weight gain. Appetite can also be lost. If this happens, small frequent meals can help maintain weight.
- Some medications also stimulate appetite.
- Extra weight puts extra pressure on bones and joints.
- Foods low in fat and sugar are advised, and fast foods should be minimised.
> Inform others - Let the school principal, teachers, sports coaches, and group leaders know about JIA. Pull-along school & travel bags on wheels are widely available and make carrying things much easier. Wheelchairs can be hired on a one-off basis to ensure very special events can be attended.
- Give them a copy of our booklet Juvenile Arthritis – A Teacher’s Guide.
> Be assertive Ask that JIA be considered in everyday situations.
- For example, arrange to be able to stretch or walk around during exams and ask for extra time to complete assignments.
- Know it’s OK to wear splints and use things like writing boards, adjustable chairs, and modified computers at school.
> Monitor the meds. Monitor all medications and inform health professionals of any over-the-counter preparations from chemist shops, supermarkets and health food stores that are also being taken for JIA or any other condition. Travel with medicines, a copy of prescriptions as well as medical notes and emergency contact numbers.
> Go camping – Camp Twinkletoes & Camp Footloose
At Arthritis NSW, our goal is to help children and young people with arthritis – as well as their families – to develop the self-management skills they will enable them to enjoy full and active lives. Our camps provide children and young people living with juvenile arthritis an opportunity to participate in fun and educational activities, in a safe and supportive environment, without fear of being different. We deliver two annual camps for children affected by juvenile arthritis: Camp Twinkletoes for children under 8 years old and their families, and Camp Footloose for children and young people aged 9 to 18 years.
Our next camp is Camp Footloose – 8-12 October 2018 (second week of NSW school holiday), Sydney Academy of Sport and Recreation, Narrabeen. Registrations are now open, so for more info go: https://arthritisnsw.org.au/camp-footloose/
Paediatric Rheumatology Network – http://www.prn.org.au/
Arthritis Australia – https://arthritisaustralia.com.au/
Australian Rheumatology Association: https://rheumatology.org.au/
Arthritis Foundation (US): http://www.kidsgetarthritistoo.org/
Exercise Right – Juvenile Arthritis http://exerciseright.com.au/exercise-right-kids-juvenile-arthritis/
Arthritis Infoline: 1800 011 041 (toll-free within Australia)
Kids Helpline: 1800 551 800 (ages 5 to 25 years)
Beyondblue: 1300 224 636
Lifeline: 13 11 14
Source: Arthritis Australia