By Tonia Wagner, Paige’s Mom
To say I was shocked when our 3 year old daughter Paige was diagnosed with Systemic Onset Juvenile Rheumatoid Arthritis, is an understatement! I had no idea children so young could have arthritis.
Shortly after her 3rd birthday, Paige developed a rash on her arm and said she didn’t feel well. Within 48 hours she was admitted into the hospital and placed in isolation, running a 105 degree fever (which lasted close to 2 weeks). In a matter of days, our once active 3 year old, could not walk, quit eating and would barely talk. After a two week hospital stay, numerous tests and painful procedures, we were given the official diagnosis – Systemic Juvenile Rheumatoid Arthritis.
It took some time to digest what it means to have Systemic Juvenile Rheumatoid Arthritis (JRA). Knowing what to do with the information we received was challenging. I went through periods of anger, sadness and denial! My husband and I did lots of research and learned how to give her weekly injections and monitored her various medications and symptoms, praying that we were making the right decisions. She began to walk again a couple of weeks after we got home from the hospital.
BEING CARED FOR
We began to develop a strong relationship with our daughter’s pediatric rheumatologist, who, fortunately for us, was only 2 hours away. Another key to her care was our phenomenal pediatrician.
Since Paige’s initial diagnosis, ten years have passed. I still frequently think about her illness in some aspect. Sometimes it’s a worrisome thought. Will she tell her teacher at school if she’s hurting or will she keep it to herself? Will her pain keep her from participating in activities? Sometimes I question the unknown. How will her illness affect her as she matures into a young adult? What long term side effects will she have from taking the various medications? Sometimes, it’s simply “why”.
I am amazed at how well Paige has handled her illness. She rarely complains and tries to take it in stride. I am so proud of her determination and motivation. Even though she is in remission, she still struggles with frequent joint pain that sometimes wakes her at night or hurts before she gets out of bed in the morning.
Is there a standard way to deal with JRA? I don’t think so. What I have learned is to let Paige be involved in her treatment and care, keep life as normal as possible for her and remain positive!
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