Talking About SJIA

Speaking with your child

While it may be challenging to discuss health situations with your child, it is important to talk with your child about SJIA. Below are 5 tips on how to communicate with your child about SJIA.

Set a positive tone:
How you handle and discuss delicate information will help set the tone for how your child feels and talks about SJIA

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

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

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

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 doctor

Along with you, your child's pediatric rheumatologist or specialist is one of the most important factors in treating your child's SJIA. By partnering with your child's doctor early, you will make sure that your child's SJIA is being properly handled. Additionally, it is important to keep your child's pediatrician aware of your child's ACTEMRA treatments, any side effects and how his or her SJIA is progressing.

A rheumatologist can:

• Give you advice on how to treat symptoms of SJIA, like pain and fever
• Instruct you on the procedure for bringing your child in to get an infusion
• Give advice on dealing with side effects from ACTEMRA^® (tocilizumab) treatment
• Give you more information that you can take to family members, the child's school and other people in your child's support network

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 SJIA with teachers, school counselors, school nurses or parents' associations. When they're aware of your child's needs and difficulties, 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 and fever, or to travel for the ACTEMRA infusion once every 2 weeks
• Need extra time for homework and tests
• Have side effects from treatment or SIJA flare-ups during the school day and need medical assistance
• Need extra time to get to and from class, and may need to leave class early to make the next one
• Be tired or distracted during the day, which can affect classroom concentration
• Need help taking medications other than ACTEMRA^® (tocilizumab) during the day, such as pain relievers
• Need to sit out physical activities like gym class, although you should encourage your child to participate as much as possible
• Be bullied or treated differently by classmates because of his or her condition
• Need to have a written plan detailing his or her individual educational needs developed through an Individualized Education Program (IEP). The guidance counselor at your child's school can walk you through the steps for setting up an IEP

Speaking with friends and family

Raising a child with SJIA can impact a lot of people in your child's life, like family, friends and other people who may care for him or her. Often, it's good when others help care for a child with a disease like SJIA. 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 they need. Children may feel neglected if one of their siblings is receiving a lot of attention, good or bad. Siblings may also feel jealous
• 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

Children with SJIA don't want to feel different from their peers. And they don't want to miss out on time with friends because they're not feeling well. You may need to talk with your child's friends and their parents about your child's SJIA.

Your child's friends should know:

• There will be times when your child isn't feeling well and doesn't feel like playing. It may be tough for other children to fully understand exactly what your child is going through, especially if they are very young
• Sometimes, when your child wants to be social but doesn't feel up to rigorous play, he or she may just need a friend to spend time with, to hang out with or talk to
• Activities with friends may need to be adjusted to your child's comfort level if he or she is experiencing symptoms or side effects. Active play may need to be replaced by less strenuous activities, like board games, movies or creative projects
• Other caregivers for your child, like babysitters, relatives and day care workers, should be aware of what your child is going through. Your child will need special consideration when being cared for

Caregivers should know:

• What medicines your child is taking and what side effects he or she may have. Keep a written log of when your child has taken medicines, and how much, to avoid overlap and double dosing
• Contact information for your child's doctor
• What to do in case of a flare-up and whom to contact
• Normal physical activity is recommended, but there may be some limitations due to your child's condition
• SJIA is not contagious and cannot be passed on to others