Practical tips for JIA

Practical tips for JIA

      1. Encourage independence and empower your child: Involve them as much as possible in decisions about their JIA; teach them about their medication; keep them in the loop. This makes them feel a little bit more in control and encourages independence.
      2. Don’t look too far ahead.  Deal with the here and now.  Make time to have fun as a family.
      3. Keep things as normal as possible.  Stick to routines and maintain your child’s daily activities, such as going to school, playing with friends, and extra-curricular activities.
      4. Research the condition.  Be informed.  Knowledge is power.   
      5. You are the best advocate for your child.
      6. Please remember every journey is unique to that child.  Your child’s medical professionals will produce a treatment plan specifically tailored for them.
      7. Don’t try and deal with it yourself. Remember all the support out there: from your child’s GP, specialist nurses, school, and Kids With Arthritis NZ Charitable Trust!
      8. Be honest to your child.  Talk about JIA with your child.  Allow you child to talk about their fears, concerns and frustration.  Point out their discoveries, adventures and triumphs.
      9. Inform others.  Explain to family, friends, sport coaches and teachers at your child’s school about Juvenile Idiopathic Arthritis (JIA), and how it affects your child’s life.  Show them the KWANZ educational video for Teachers and Caregivers.  This is available on the KWANZ website. Click Here to watch the Video 
      10. Don’t forget the siblings!
      11. Encourage your child to have a go. Participate in activities, clubs, sports, crafts, music, learn a new language, start their own little enterprise etc.  It helps them foster feelings of competence and boost kids’ confidence and self-esteem.
      12. Keep your kids as active as possible.  Strength and mobility is built and maintained through movement. 
      13. Develop a healthy sleep routine.  Ditch the screens; phone, TV, computer, video gaming – an hour before bed.  Suggest more relaxing activities like reading a book, or listening to music.  Relaxation breathing and relaxation exercises are good techniques to learn. Creating good sleeping habits is a process.
      14. Be positive.  Encourage a ‘can do’ attitude.  Try not to focus on the negatives, of what they can’t do, or is difficult to do. Don’t let the condition define your child as a person.
      15. JIA can be marked by a flare-up.  Have an action plan worked out ahead of time, be prepared.
      16. When your child is feeling sore: cold packs or warm wheat bags / water bottle, a shower or bath can help.  Distraction is also good – a movie, reading, board game, music, karaoke, even playing with or cuddling a pet – anything to take their mind off the pain.
      17. When required, start the day a little later.  A warm shower or bath and a nice massage can ease stiffness.
      18. Sometimes dads bottle up their emotions; they, too, need to talk.
      19. Celebrate improvements and achievements in all areas of their life.
      20. Keep talking to the healthcare professionals involved in your child’s treatment. Write down questions you have. Have them on hand at your child’s next medical appointment. 
      21. Monitor your child’s prescription medication.  Take this information to your child’s specialist appointment. Don’t change the prescribed dose of medication without consultation with your child’s medical professional. It is highly recommended to tell your child’s specialist if you wish to put your child on any natural health vitamins, fish oil etc.  Discuss this before starting anything.
      22. When having an injection: Use a Buzzy4shots, cold pack, or numbing cream to minimise discomfort.  Use distraction, hold a favourite toy, listening to music, breathing exercises, or tapping techniques can help during a medical procedure.  Stay warm, relaxed and hydrated.
      23. If your child is having a general anaesthetic and they are feeling very anxious, consult with the paediatric rheumatologist, anaesthetist or surgeon, to see if it is possible for them to be prescribed a sedative before the procedure.
      24. Seek support.  Kids With Arthritis NZ Charitable Trust has fun events where your family can meets others on a similar journey. There is also a (closed) Facebook group for KWANZ parents, where they can discuss topics. Kids With Arthritis NZ Parents Support Group.  Contact our Secretary  – [email protected]