In downtown Seattle on Dec. 8, hundreds of festive runners dressed up for the Arthritis Foundation’s annual Jingle Bell Run.
Among them was sassy 3-year-old Izzy Bock, who scampered down Fifth Avenue dressed as Cindy Lou Who from The Grinch. Onlookers would likely never have guessed this energetic child has juvenile idiopathic arthritis.
“How long had she been in pain?”
Juvenile arthritis is an autoimmune disorder causing inflammation of joints which can be associated with pain and stiffness, and can affect range of motion.
It is often challenging to diagnose juvenile arthritis in young children.
“Often, kids don’t complain of pain,” says Seattle Children’s rheumatologist Dr. Sriharsha Grevich. “They would rather focus on playing. Parents may not notice something is wrong until their child starts limping or shows other signs.”
This was the case for Izzy, whose mother, Amber Bock, is a nurse practitioner in Seattle Children’s Medically Complex Child program. When Izzy was 2 years old, she came home from daycare with a swollen ankle after tripping on a climbing structure. Amber took her daughter to an urgent care clinic, but X-rays didn’t reveal any serious injury.
A few weeks later, Bock and Izzy went to the Seattle Aquarium for a Mother’s Day event and Izzy refused to walk.
“I knew then something was seriously wrong,” Bock said. “My mind jumped to all of the worst-case scenarios.”
After additional X-rays and blood tests, Izzy was referred to Seattle Children’s Rheumatology for an emergency appointment. There, she was diagnosed with juvenile arthritis.
Despite her medical experience, Bock knew very little about juvenile arthritis and the unknown terrified her. She remembers crying and holding hands with Drs. Kristen Hayward and Sarah Baxter as they described her daughter’s chronic condition.
“I felt guilty I hadn’t recognized it sooner,” Bock said. “She was such an active child. I wondered, ‘How long had she been in pain? Had she just grown used to it?’ That was heartbreaking.”
Tackling treatment challenges
Ultrasounds revealed arthritis had caused inflammation in both of Izzy’s knees and her left ankle. She started taking anti-inflammatory medications and, under sedation, had steroids injected directly into her joints.
“It was scary watching Izzy undergo general anesthesia, because I was keenly aware of the risks,” Bock said. “But the surgical team went to great lengths to make Izzy comfortable and put me at ease.”
The steroid injections helped control Izzy’s arthritis for about 6 months. Then, Bock noticed her daughter was struggling to climb stairs. They did a second round of steroid injections, but this time the therapy only lasted 4 months.
Izzy then began seeing Grevich, who started her on methotrexate (a chemotherapy drug) in July to treat her arthritis.
Bock and Izzy’s dad, Travis Bock, now give their daughter a shot of the medication at home once a week.
“It can be really hard,” Bock said. “With my nursing background, I’m used to giving kids shots, but it’s different when it’s your own child.”
Rachel Kinsinger, a Child Life specialist, helped the Bock family develop a plan to help Izzy cope with her injections and blood draws. She made Izzy a sticker chart and taught the family distraction techniques.
“Now, we have a system that works for us,” Bock said. “Every Friday night, Izzy picks out a movie, we apply some numbing cream and give her the shot. She gets to choose whether we do it before or after dinner. We try to give her as much choice as possible. No 3-year-old wants a shot, but she does really well with it.”
An optimistic outlook
Izzy visits the Rheumatology clinic and has her blood drawn every three months. She also sees an ophthalmologist regularly. Kids with arthritis can also have inflammation in the eyes that, if untreated, can cause blindness.
While her treatment regimen can be challenging, Izzy’s condition has greatly improved since she started taking methotrexate. She is back to being an active kid, playing soccer and taking gymnastic and swim lessons. She loves camping, wants to learn to kayak and enjoys cheering on the Seattle Sounders.
“The challenges Izzy faces have not hindered her spirit,” Bock said. “She is still our loving little girl with an infectious giggle.”
Grevich credits Izzy’s success, in part, to her parents’ vigilance.
“Caring for a child with arthritis has a big impact on day-to-day life,” Grevich said. “But Amber and Travis make sure she gets to all her appointments, keep up with her medications and encourage her to stay active. That makes a big difference.”
About half of children with juvenile arthritis eventually go into medical remission, in which they can stop taking all medications without experiencing any inflammation. Unfortunately, there’s no way to know whether this will be the case for Izzy.
“We’re really happy to see where Izzy is at today,” Bock said. “We’ve met a lot of families with children whose arthritis has worsened, but we try to be optimistic and remember how lucky we are to be doing so well right now.”
Caring for her daughter has influenced how Bock helps other families at the hospital.
“I’ve learned caring for medically complex children at home is harder than I thought,” Bock said. “I try to recognize all of the cumbersome challenges families are going to face after they’re discharged — such as giving injections and disposing of needles — and help them prepare while they’re still here.”
The Bock family began participating in the Arthritis Foundation’s annual Jingle Bell Run last year, to raise funds and increase awareness for arthritis.
This year, Izzy was the event’s youth honoree and her team raised more than $8,000 for the Arthritis Foundation.
“Izzy demonstrates you can have arthritis and still live an active life,” Grevich said. “Our goal as rheumatologists is to make sure kids can be kids, and that’s why we are aggressive in our management of the disease. Arthritis doesn’t have to be a life sentence of limitations.”