When a child or teenager is diagnosed with a rheumatic disease, it can be a scary and difficult time for the entire family. In many cases, before the diagnoses is given, they have already seen multiple health care providers as the family looks for answers to what is causing a child’s pain and symptoms. Navigating the health care environment can be an overwhelming and challenging process. However, once a diagnosis is made, many parents report that the fear of the unknown diminishes slightly and knowing what to focus on can help tremendously.
Education is Key
One of the first ways you can help your child deal with a chronic rheumatic disease is by learning more about the disease process and treatment plan. When you are knowledgeable about your child’s disease, you are better equipped to make informed decisions on his or her behalf. Being educated on your child’s condition can also help you cope positively with the challenges you will face as a parent, as well as better support your child with the challenges he will face. Children take cues from their parents, so for the child to adjust well with the new diagnosis, it’s helpful to see the parents adjust to this new challenge with strength and a positive focus.
Be A Partner
Building a relationship with your child’s health care team will help you be an informed partner her their care. Depending on their age, seeing parents involved in their care will encourage children to take an active role as well. Learning the names of all members of the pediatric rheumatology team will help you and your child feel comfortable asking questions and voicing concerns as they arise.
The rheumatology team can provide age-appropriate education to your child regarding their disease process and treatment plan. The American College of Rheumatology has a listing of professionals that are commonly part of the health care team that can get you started. Other resources provided by your health care team such as books, trusted websites, and local community programs can help reinforce or clarify the educational material. Get involved in community activities such as camps, support groups, and local or national conferences.
Make Your Voice Heard
Be an advocate for your child in the school environment. Children and teens with chronic rheumatic conditions may need special accommodations to succeed at school. This is a great time to educate teachers, school nurses, and school administrators about your child’s rheumatic disease. You should also make it a priority to meet with staff at the beginning of the year so that all school personnel caring for your child are aware of the individual needs. Lastly, learn as much as you can about federal programs like a 504 or IEP (individualized education plan) which can help your child do well at school.
And don’t forget your child’s goals inside the classroom and in extra-curricular activities. With direction from the health care team, allow your son or daughter the opportunity to participate in sports and group activities. Direct him/her toward activities that are in line with the disease process. Encourage and live a healthy lifestyle for yourself and the entire family, which should include regular exercise, a healthy diet, and a positive emotional well being.
Mental Health is Important
Children with chronic rheumatic disease often struggle with isolation, sadness, and depression. Be open with your child and make a conscious effort to address your own and your child’s emotional well being on an ongoing basis. Children and teens with rheumatic disease must endure painful procedures on an ongoing basis, as well as painful injections as part of their treatment plan. Seek support and resources from the health care team to help your child. When necessary, meet with a psychologist who can help you and your child adjust and cope with the diagnosis and disease process.
All in all, learn to be flexible and take every day as a new day. Children with rheumatic disease often experience flares that can be unpredictable. By taking life one day at a time, learning to be flexible, and adjusting the child’s and family’s plans to accommodate these flares will make every challenge along the journey a more positive experience.
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By Elizabeth Roth Wojcicki, MD