Ten Tips for Parents of Children Living with JIA
April 21, 2023 | Rheumatic Disease
Having a child diagnosed with juvenile idiopathic arthritis (JIA) can be overwhelming for even the savviest of parents. Common thoughts may include:
What are all these medications?
Are they safe for my child?
Will my child have JIA for life?
Will they grow out of this disease?
Will my child be able to return to sports?
Will physical therapy help?
I’ve been asked these and a myriad of other questions by both parents of newly diagnosed JIA patients and veteran parents of children with JIA. There is so much to know, learn, and become acquainted with while everything appears to be moving at lightning speed.
So, first, let me assure you. You don’t have to know everything all at once!
Pediatric rheumatologists are trained not only in the science and art of treating pediatric rheumatologic diseases, but also in caring for the children and families who live with these illnesses every day. Your relationship with your pediatric rheumatologist will not only provide the answers and guidance to the questions above but will also equip you to be the best advocate and care provider for your child.
Practicing these ten tips will empower you as the parent of a child with juvenile arthritis:
- Devise a plan for your child’s medications. Many parents find using a pill box to organize daily medications minimizes the chances of forgetting to take a medication or confusing medications. Identify one day of the week to plan out all medications for the upcoming week.
- Write down your questions BEFORE the doctor’s visit. It never fails. When you’re at home, you have a million questions you’d like to ask at your child’s next appointment. Yet, as soon as you arrive, you can’t remember a single one! Prevent this inevitable situation by keeping your questions in a handy notebook or in the “Notes” app on your phone.
- Keep all medical appointments and when you can’t, reschedule as soon as possible. Your child’s appointment with their pediatric rheumatologist is an important part of their care plan. Concerns, questions, and medication changes are addressed at the scheduled appointment. This is your opportunity to make sure your child’s health remains on track!
- Observe your child for changes in behavior like limping, increased fatigue, moving more slowly in the morning (i.e., morning stiffness) decreased appetite, or swollen joints. These symptoms may be the first signs of a disease flare; even if your child says they “feel fine”. Alert your pediatric rheumatologist of any of these changes. Adjustments to your child’s treatment plan may be warranted.
- Inform your child’s teachers about their diagnosis of JIA. Children with JIA may require special accommodations such as a notetaker, extra time on tests, or accommodations for joint protection. Notifying your child’s teacher and educating them on JIA can help you obtain these resources.
- Discuss sports participation with your pediatric rheumatologist. Your pediatric rheumatologist wants to help your child be as active as possible. However, when joints are inflamed, they are more prone to injury. During these times, high impact activities such as running and jumping are not recommended. However, when your child is in remission (i.e., a period of no disease activity), regular physical activity is recommended to maintain cardiovascular health and bone and muscle strength. Always discuss sports participation during your regular appointment.
- Be aware of which vaccinations your child can and can’t receive. Some vaccinations, specifically live vaccines, are not compatible with specific medications used to treat JIA (e.g., methotrexate). Make sure your child is up to date on vaccinations before starting new medications. If this is not possible, avoid live vaccines until your child is weaned off medication.
- Discuss side effects of medications with your pediatric rheumatologist. Children will react differently to medications and it’s possible every medication your child is prescribed may not work well for them. If this is the case, don’t abruptly stop the medication. This may lead to even more serious side effects or outcomes. Discuss all side effects and medication changes with your pediatric rheumatologist who will work with you to find a suitable alternative.
- Maintain a healthy diet for weight control. While no specific diet has been proven to eliminate or cure JIA, a healthy diet consisting of lean protein, fruits, vegetables, water, and fiber will help maintain a healthy weight. This is important for joint protection and minimizing the amount of stress placed on the joints.
- Monitor your child’s social, emotional, and mental health. For children, having a long-term illness like JIA may result in feelings of sadness, anger, or decreased self-esteem. Check in with your child from time to time and ask them how they feel about all the changes occurring due to their diagnosis. Most times, children just need to vent their frustrations regarding this life altering event. When that is not the case, psychologists, therapists, and peer groups can be extremely helpful in navigating the mental health of a child with JIA.
JIA is a chronic, autoimmune condition. However, when well-controlled, children with JIA live full and active lives. With these 10 tips, your child will be that much closer to a life not affected by arthritis.