Make treatment easier for your child
Caring for a child with arthritis is not always easy. But there are resources available to help. In addition to the information listed below, the child's doctor or staff can be a useful asset when you need it most. It's always a good idea to partner closely with them during your child's treatment.
Speaking with your child about the disease
Talking about your child’s condition
With a disease as challenging as SJIA, it's essential to keep the lines of communication open. Explaining to others what your child is going through can go a long way in ensuring that he or she is taken care of appropriately. Equally as important is talking to your child about the disease. Below are tips to keep in mind when speaking to various audiences including your child, your child’s school, and even your family.
Speaking with your child about the disease
While it may be challenging to discuss health situations with your child, it is important to talk with your child about his or her disease. Below are 5 tips on how to communicate with your child.
1. Set a positive tone: How you handle and discuss delicate information will help set the tone for how your child feels and talks about his or her condition.
2. Be up front: You may want to protect your child from difficult situations, but withholding information may actually make him or her feel there is something to be embarrassed about or feared.
3. Keep communication open: Talking and listening openly helps ensure that if your child starts feeling worse or gets new symptoms, you can consult your child's doctor as soon as possible.
4. Be supportive: Children may feel ashamed of "being different" from their friends. Having a supportive family can make children feel more confident and empowered about facing the disease.
5. Consider counseling: Talking to someone outside of the family, like a counselor or psychologist, can provide additional insights while helping your child work through his or her feelings about the disease.
Speaking with your child's school
Speaking with your child's school
With the amount of time children spend in school, it may be necessary to talk about your child’s condition with teachers, school counselors, and nurses. When they’re aware of your child’s needs, they can help make your child’s life easier when you’re not around. Certain changes may need to be made so your child can get the most out of the school day.
Your child may:
- Be absent from school because of flare-ups of pain, or to travel for ACTEMRA infusions
- Need extra time for homework and tests
- Have side effects from treatments for flare-ups during the school day and may need medical assistance
- Need extra time to get to and from class, and may need to leave one class early to make the next
- Be tired or distracted during the day, which can affect classroom concentration
Speaking with family about your child's condition
Speaking with your family about your child’s condition
Raising a child with SJIA can impact a lot of people in your child’s life, like family, friends, and caregivers. That larger support network can make the child feel comfortable and secure knowing there are a lot of people he or she can count on.
Family members should know:
- If you are caring for more than one child, it may be difficult to give everyone the attention he or she needs. Children may feel neglected if one of their siblings is receiving a lot of attention, good or bad
- Managing SJIA can be difficult, and every family situation is different. Your child’s doctor can direct you to valuable resources that can help the whole family manage the disease, but don’t be afraid to ask questions about your family’s unique circumstances
Tips for helping your kids
There are many things to consider when raising a child with systemic juvenile idiopathic arthritis (SJIA). Your child's doctor and healthcare team can answer your questions. Here are some tips to consider while your child is being treated for SJIA.
Healthy diet: It's important that your child continues to eat a healthy diet no matter what treatment for SJIA he or she is on.
Exercise: Encourage your child to exercise and participate in gym class and school sports as much as possible based on guidelines set by your child's doctor. Walking, riding a bike, and swimming are considered good physical activities for children with forms of arthritis. Remember to always talk to your child's doctor about exercises that are safe and beneficial for your child before starting a new routine.
Physical and occupational therapy: Physical and occupational therapy can make it easier for your child to move swollen joints and maintain a good range of motion. Always talk to your child's doctor about therapy that is safe and beneficial for your child.
Joint stiffness: This is common after waking up in the morning or from a nap. Taking a warm shower or bath, wearing warmer clothing, or using a hot compress can help relieve stiffness. Some children do better with a cold compress, so experiment with different treatments to see which works best.
Medications: Monitor your child's medications in addition to ACTEMRA and make sure that all are being taken at the right times and in the right amounts as prescribed. Keep a list of your child's current medications with you for doctor visits, or if you need to go to the hospital for any reason.
Routines: Normal routines and habits should be maintained as much as possible to help keep the physical and emotional effects of your child's condition to a minimum.
Rest: Ensure your child gets plenty of rest to keep from getting overtired.
School: Stress the importance of going to school, even when your child feels morning stiffness or pain.
Communication with doctors: Discuss your concerns with your child's doctor and other healthcare partners. They are there to answer your questions in addition to treating your child.
Activities: When your child isn't feeling well, get creative with activities. Fun activities like drawing, writing, and painting can be less stressful on the joints and also provide ways for your child to express how he or she feels.
Friends: You can also create opportunities for your child to hang out with friends if he or she isn't feeling well. Throw a sleepover or host a movie night, so your child's friends can come over. Staying in touch with friends is an important way to show your child that the illness doesn’t have to keep him or her from having a social life.
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