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From silent pain to “I feel like I can do anything”

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In early 2017, nine-year-old Carter wasn’t well—he was frequently tired and napped often, had an awkward walk and appeared to be in pain. ​Carter proudly says that he never complained, and his parents Jenny and Shane are quick to agree.

“Carter never complains about anything, which made recognizing the problem a bit more challenging for us,” said Jenny. “We did all the right things – we made sure he got plenty of sleep and was well rested for school, cooked healthy meals, but yet, he was always tired and we couldn’t figure out why.”

It wasn’t until one of Carter’s medical appointments that a health care worker connected the dots. Carter happened to be in more pain than usual and a specialist noticed the signs – Carter was experiencing a ‘flare-up’.

A flare-up is when a child with juvenile idiopathic arthritis (JIA) experiences pain, swelling and stiffness in their joints that can change from day-to-day. When the condition becomes more active and the symptoms worsen, it’s known as a ‘flare’ or ‘flare-up’. 

Carter was promptly booked in to see the pediatric rheumatologist team at BC Children’s Hospital. His parents travelled from their home on Seabird Island, a First Nations Band located in the Upper Fraser Valley, to the hospital every three to four weeks for the next several months for treatment. By June 2017, the treatment was working, Carter’s pain was diminishing and his family had answers. 

“When I first met Carter he had many joints that were swollen which made it difficult for him to do activities he enjoyed,” said Dr. Kristin Houghton, rheumatologist, BC Children’s. “As his arthritis improves, his ability to participate in activities increases and each visit he tells me about a new activity or hobby he can now take part in.”
“You wouldn’t know he was the same kid,” said Shane. “Being free from pain has given Carter so much energy; we are glad we now understand what he was going through and can better accommodate his needs.”
Although Carter’s pain has subsided and is being managed, JIA symptoms come and go. Jenny says that outings that most families take for granted, like going to the movies, hiking, or long car rides, are something their family has to plan for. For now she says they are taking things slow to allow Carter to adjust and enjoy his new freedom.

“I feel like I can do anything,” said a smiling Carter, now 11-years-old. “I used to be sensitive—a lot of the time I would be in pain if someone touched me. Now I feel so much better and can do the things I love.”
Since Carter’s condition has improved he’s started to play chess and his favourite board games again, and most recently, he’s taken up beading. Jenny and Shane’s advice to other parents who may be going through the same thing as they did—don’t be afraid to reach out, get a referral and see a specialist. 

JIA facts
  • Children of First Nations decent are at a higher risk of developing JIA. 
  • Approximately three out of 1,000 children in Canada have JIA.
  • Arthritis can affect any joint—some children have one affected joint, while others have several. 
  • Parents/caregivers should seek help if they notice their child suddenly develops a limp, particularly in the morning, or after a nap. 
  • About 10% of children with JIA are very sick with fever and rash when they develop the disease.  
BC Children’s Division of Rheumatology practices a team approach to care allowing families to see a pediatric rheumatologist, specialized nurse, social worker, physiotherapist and occupational therapist during the same visit. Treatment plans are coordinated between specialities and many children also participate in research projects at the time of their clinic visit. 

For resources and to learn more about how BC Children’s Division of Rheumatology helps kids with diagnosis and treatment of arthritis and other rheumatic diseases, visit the BC Children’s website
BC Children's Hospital
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