Caring For Your Child

As a parent of a child with JSpA, you may have questions, or need some guidance and support yourself. Below, parents from SAA’s advisory committee share what they have learned from caring for their kids with JSpA.

Keep a log of symptoms and medications
  • Update it before every doctor’s visit with any new symptoms, or questions you might have.
  • Update it after every doctor’s visit with new treatments prescribed.
  • Write down medications exactly as prescribed.
Follow your gut
  • You know your child better than anyone else.
  • Do not let someone tell you that a symptom isn’t related or doesn’t exist just because they haven’t seen it yet.
Ask questions
  • If you want to try something or are curious, ask the question.
  • Did you read about a new medication or natural therapy? Ask the question.
  • Are you worried that a new activity your child wants to try may be too much for their body? Ask the question.
Communicate with the school BEFORE the year begins
  • Come prepared to the meeting with your child’s current medical history.
  • Ask for the accommodations that your child needs or deserves.
  • Bring a current copy of your child’s IEP or 504 plan if applicable.
  • Communicate frequently with teachers.
  • Take a printed copy of our helpful JSpA medical information guide for your child’s care team (Download here).
Do not live in a bubble
  • Your child wants to live as “normally” as possible.
  • Trust your instincts and do your best to keep your child healthy and safe, while also allowing them to have fun and be a kid.
Find your network
  • You are here which is a great start!
  • Reach out to a parent mentor so you have a sounding board for both worries and ideas.