In every family, there is always one family member who seems to set the tone for the rest of the family. For Jessica and Shane Rine, their daughter, Ruby, age 6, is that person.
Ruby, who lives in Tallmadge, is the couple’s first-born child, as well as the first grandchild and niece in both Jessica’s and Shane’s families. With many of Ruby’s grandparents, aunts and uncles living nearby, Ruby is used to being the center of attention in a room full of adults.
“She is very engaging, smart and active,” said Jessica. “Ruby wants to be involved with everything.”
Yet, despite this interaction with the adults in her life, none of them noticed anything unusual in the way Ruby moved or behaved.
“Shane and I were busy with our family,” Jessica said. “We were raising Ruby and Eve, who is 1 year younger than Ruby. We were also expecting another baby.”
Something wasn’t right
Two and half years ago, Jessica and Shane began noticing that something was different about the way Ruby moved, especially when compared to Eve.
“Ruby woke up from naps and moved very slowly,” Jessica said. “I thought to myself, ‘She looks like a little old woman in the way she moves.’”
There were other signs, too. For instance, when Ruby played outside, she complained of being tired quickly and wanted to go inside to lay on the couch.
“I watched the way Ruby ran. She used the sides of her feet instead of putting all her weight on her feet,” she said. “I mentioned this to other people, and they noticed it, too.”
The couple grew more concerned when Ruby began waking up at night and crying. Ruby, who was only 4, couldn’t describe what bothered her.
Searching for a diagnosis
That’s when Jessica searched online. She looked up autoimmune diseases, which ran in Shane’s family. Jessica discovered that arthritis is a type of autoimmune disease.
Armed with this information, Jessica took Ruby to see her pediatrician. However, the doctor didn’t think arthritis was the problem. But Jessica and Shane weren’t convinced. A few weeks later while on vacation with her extended family, Jessica shared her concerns with her uncle, an emergency room physician. At first, he told her not to worry, but after a few days of observing Ruby, he saw how stiffly Ruby moved. He encouraged Jessica and Shane to find a pediatric rheumatologist, who specializes in evaluating and treating joint, muscle and bone disorders.
“I sobbed,” Jessica said. “I was very pregnant and emotional. It was upsetting to think that Ruby was in pain and we never knew it.”
Jessica made an appointment with Dr. Kathryn Phillippi-Cook, Akron Children’s pediatric rheumatologist, who is known as Dr. Phillippi to her patients. During the first exam, Dr. Phillippi was able to diagnose Ruby’s condition as juvenile idiopathic arthritis (JIA), the most common form of juvenile arthritis.
“From the very first meeting, Dr. Phillippi was amazing, the way she helped us understand the disease and answered all our questions,” said Jessica. “She was able to detect fluid build-up in Ruby. Ruby is so thin, yet Dr. Phillippi found fluid in Ruby’s knees and fingers, which were signs of inflammation in her body.”
Dr. Phillippi also calmed Jessica’s and Shane’s fears about their other children developing juvenile arthritis, saying it was very unlikely.
Understanding juvenile arthritis
Dr. Phillippi explained to the Rines how rare juvenile arthritis is, nor have researchers found what causes JIA. In the United States, there are approximately 300,000 kids and teens under the age of 16 who have some form of juvenile arthritis. Left untreated, the disorder causes pain, impacts quality of life and affects bone development and joint function.
Although juvenile arthritis isn’t curable, it can be managed or go into remission. Initially, Dr. Phillippi treated Ruby’s JIA with a NSAID (nonsteroidal anti-inflammatory drug), which she took twice a day for 3 months, but it didn’t stop the inflammation. Two years ago, Ruby started receiving a methotrexate injection weekly.
“The injections make Ruby nauseous after she gets them, but they are controlling her inflammation,” Jessica said.
Fortunately, at Ruby’s telehealth visit in April, Dr. Phillippi determined Ruby didn’t have any inflammation. Ruby now receives a methotrexate injection twice a month instead of 4 times a month.
“We went into the hospital for bloodwork and both Ruby and I wore face masks,” Jessica said. “It went well. The follow-up telehealth check-up was also easy. Dr. Phillippi used the same process she uses in the office, checking Ruby’s hands and asking questions. Dr. Phillippi is so good. She knows what she’s looking for, even while examining Ruby through a phone.”
Looking forward to the future
Now that Ruby is getting regular treatment for JIA, she is able to go to school and do all the activities her younger sister does, including gymnastics.
“Ruby was able to keep up with the other kindergartners this year without any problem,” Jessica said. “She loves to read and learn and likes to color non-stop.”
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