Meet Natalie & Eleanor!
My name is Anna Sutton, and I am a parent representative at Seattle Children’s Hospital. I am the parent of four daughters, ranging in age from 15-24. My youngest two live with arthritis. Their arthritis experiences have been quite different, given their different ages at diagnosis and the difference in our understanding of arthritis at the time of diagnosis.
Natalie’s arthritis story began more than 13 years ago when she was a toddler. After recovering from a bad case of RSV, something just wasn’t right. Before, she was forever toddling along after her sisters, always wanting to be part of everything they were doing, but despite no longer being sick, she continued to want to be held and carried everywhere. She would cry when set on her feet, and would scoot along the floor rather than walk.
After a few weeks of this, she was seen by our wonderful pediatrician, who walked into the exam room, took one look at Natalie’s chubby little legs, and said, “I think I see the problem. Take a look at her right knee and compare it to the left one.” I couldn’t believe that I had failed to notice the very obvious amount of swelling in her right knee. Our pediatrician had just participated in a lecture or seminar led by a local pediatric rheumatologist, so she immediately referred us to Seattle Children’s rheumatology division, and we were seen about 2 months later where Natalie was diagnosed with oligoarticular JIA. In some ways we were lucky – she was a classic oligo case and was diagnosed right away.
Like most parents I’ve spoken with since then, I was completely lost during those first few appointments. Despite working with an amazing care team, this was an entirely different world that we were entering – one filled with words like effusions and synovial fluid, medications with acronyms like DMARDs, NSAIDs, and in this world, Natalie’s future was far more complicated than it had been just weeks before. I think one of the most challenging things about that initial diagnosis period is attempting to make treatment decisions while struggling to understand the very basics of the diagnosis.
I’m grateful for providers who took the time to walk us through options and explain recommendations, helping us to feel confident in the treatment course. This was especially important as we encountered well-meaning individuals who questioned medication decisions, including a pharmacist who refused to fill Natalie’s naproxen prescription without calling the rheumatologist to confirm the dosage every single time it was ordered, and who told me each time I picked up a methotrexate refill that these meds were damaging my child so we should take her off the medication as soon as possible.
While we hoped to be in the lucky group whose children go into long-term remission quickly, Natalie’s body had other plans. Within a year, her diagnosis had changed from oligo to extended oligo as joint after joint was added to the list. She responded well to methotrexate, and was back to running around after her siblings when, at a routine ophthalmology appointment, everything changed again. She was diagnosed with uveitis, and we began the process of finding a medication combination that would control both her joints and her eye inflammation.
A few years later, after another relatively quiet period, her dentist found issues in her pano xray, leading to the finding of TMJ inflammation. Across the course of the years, Natalie has experienced various flares, but we have been lucky. With the help of her wonderful care team in rheumatology, many medication adjustments, frequent rounds of physical therapy to regain strength, protect joints, and restore range of motion in affected joints, and a supportive JA community, Natalie is thriving.
Eleanor was only 5 when Natalie was diagnosed, so she was raised with a younger sibling with JIA. She has attended our local family arthritis camp every year, attended too many JA events to count, participated in Walks to Cure Arthritis and Jingle Bell Run teams every year, and participated in legislative advocacy opportunities related to arthritis priorities. She has been a never-ending source of support for Natalie.
Just before the start of Eleanor’s senior year of high school, she came to me and said that her fingers had been bothering her. So, a few things to know about Eleanor – she loves physics and she loves music. She had played cello in her school orchestra for 6 years, and was excited to be first chair during her senior year. So when she came to me and said that it hurt too much to play her cello and she was struggling to complete homework because it hurt to write, my heart sank. In addition to the pain, she was struggling with debilitating fatigue. Because of family history, she was referred quickly to Seattle Children’s, where she, too, was diagnosed with arthritis.
For me, Eleanor’s diagnosis was so different. I knew more about what questions to ask and what to expect. She was old enough to be involved in all care decisions, so my role was more as an advisor and emotional support. I would like to share her words about her experience with symptom onset and diagnosis:
Eleanor said, “I’d say the hardest part was that I just didn’t have the energy to really interact with people for the first few months (when symptoms were the worst and during the diagnosis process), and as soon as the physical symptoms were manageable, I had the immediate mental stress of catching up with everything since I had fallen behind when symptoms were bad.
“The social aspect was huge, too. With school and with my friends, I was feeling that I was never trying hard enough because I couldn’t put in as much effort as I wanted to. The academic pressure was intense because I was preparing to go to college when all of this was going on.
“In terms of the diagnosis, I think I was pretty relieved when I was diagnosed quickly because I knew we would be working towards getting answers and treatment. We would have a plan of action and things would get better. I guess the challenge that goes with that is that I knew things were always going to be really uncertain and that symptoms could get bad at any point, even when things had been going well.
“Because I knew things could change quickly, even though people were nice and supportive, I worried that it wouldn’t sound believable when one day was fine and the next was awful. That’s something that bothers me, especially as my symptoms can sometimes get worse with stress, and I’m worried it sounds like an excuse at times when I’m having a bad day and struggling.
“I think the biggest benefit that came out of all of this is that I’m much better at talking through things with people and reaching out when I need help because I’ve learned how important it is to be proactive about all of this, to have a plan in place in advance of bad days. I think that has helped with my confidence in general, too, as I’ve learned how to have difficult conversations with peers, supervisors, and professors.”
From my perspective as a parent, here are some lessons I’ve learned over the years.
Don’t be afraid to ask questions, and to keep asking questions until you understand.
When possible, frame challenges as opportunities. I will be completely honest – every flare or setback is devastating. For me, it is helpful to frame it as a learning experience – the flare was happening whether we recognized it or not, and now we have the information we need to move forward and manage things better.
Advocate for your child and help them develop the skills necessary to advocate for themselves. A note here and perhaps an unpopular opinion – I would ask that we all are careful when we talk about self-advocacy. In our experience, particularly in the school setting, that term is used in a way that absolves the adults from responsibility and places all responsibility on the child to make sure that their needs are met. This is not okay, particularly since there are times when the children in our care are struggling and need the adults in their lives to step forward on their behalf. One way that my children advocate for themselves is by asking for me or another trusted adult to advocate for them when they are not able to do so in that moment.
Work with your team. Remember that you are all on the same side – we are all working to get the best possible outcome for our kids.
Finally, juvenile arthritis is exhausting. It is unpredictable. You never know what will happen in the coming months, so enjoy those times when things are going well and celebrate the successes.
I would like to conclude by issuing a challenge to those listening to continue the amazing work that you have been doing with PR-COIN to improve care for children like mine. We have made so much progress. Let’s continue to build on that.
