Pain-free and Positioned for Speed

Pain-free and Positioned for Speed

Published in Rite Up, 2023 – Issue 1. 

“When I’m on the snow, I’m not really thinking, I’m just skiing,” says 15-year-old Banks, of Beaver Creek, Colorado. “I like to go fast!”

Banks is an alpine ski racer. He skis for Ski & Snowboard Club Vail and attends high school at Vail Ski & Snowboard Academy where he trains and competes in races across the nation and internationally. Banks started skiing when he was 4. At age 6, he told his dad he had found his sport. In a typical year, he skis in alpine events, including slalom, giant slalom, super-G and downhill.

When Banks was in 4th grade, he started having hip pain. “I would wake up in pain and not want to go skiing,” he says. “In class, I had pain in my tailbone from sitting in a chair.” Doctors in Denver diagnosed him with juvenile idiopathic arthritis (JIA). Banks’ parents, who are from North Texas, decided to seek a second opinion from Scottish Rite for Children.

At Scottish Rite, rheumatology experts confirmed JIA as well as a diagnosis of bilateral sacroiliitis, an inflammation of the sacroiliac joints that connect the spine to the pelvis. The team prescribed weekly injections, and after getting his medication just right, they were able to manage his condition.

“The last time I had pain was in 5th grade, and I was on crutches,” Banks says. “Now, I almost forget that I have JIA.” His mother, Brandi, says that his care has been handled so well that his diagnosis has not held him back from accomplishing what he wants to do. “I want to make the U.S. Ski Team,” Banks says, “and my ultimate goal is to ski in the World Cup.”

“Without Scottish Rite, I wouldn’t be able to ski,” he says. “They not only care about how you are doing as a patient, they care about your life.”

Read the full issue.

Giving It All – Pushing Through Arthritis One Finish Line at a Time

Giving It All – Pushing Through Arthritis One Finish Line at a Time

Cover story previously published in Rite Up, 2021 – Issue 2.
by Hayley Hair
 
Preparing to qualify for the Amateur Athletic Union Junior Olympic Games, the largest national multisport event for youth in the United States, is no small feat. Contenders need intense training and ironclad dedication to be considered among the strongest, fastest, most skilled student athletes competing from around the country.
 
Seventeen-year-old Kelaiah, of Balch Springs, has definitely put in the work. She trains twice a day nearly every day for the 200-meter, the 400-meter and 4 x 100-meter relay races. “I’m training hard every day and giving it my all every time I go out there,” Kelaiah says. “What I have for that day is what I give, and I try to push more if I know I’m not feeling 100%.”
 
Unlike the runners she’s competing against, Kelaiah has been mentally and physically working through a delicate balancing act of becoming one of the best while managing juvenile idiopathic arthritis (JIA).

FINDING OUT ALL ABOUT ARTHRITIS
At 15, Kelaiah was playing basketball, volleyball and running, and when she started having swelling, pain and inflammation around her knee, her pediatrician referred her and her mother, Tanisha, to Scottish Rite’s Rheumatology team.
 
“She had a significantly swollen knee but remained very active,” says Kelaiah’s rheumatologist Katie Stewart, M.D. “Because she’s an athlete, we needed to think about other causes of swelling, more mechanical or injury-related issues.”
 
Arthritis is an autoimmune condition that causes swelling in one or more joints, and after six weeks of persistent joint swelling, it is classified as one of the chronic types of arthritis, including JIA for those 16 and younger. Arthritis can look like other common pediatric problems, so determining the diagnosis is crucial in taming the inflammation and potential damage caused by the condition.
 
“She was one that we were not quite sure of the diagnosis at first, and we were grateful to have great radiology input from our team,” Stewart says. “We work with Orthopedics and Sports Medicine, and in Kelaiah’s case, Radiology really helped us confirm the diagnosis.”

Scottish Rite treats patients from Texas and beyond with JIA and other rheumatic conditions, such as scleroderma, systemic lupus erythematosus, vasculitis and dermatomyositis. “I think people are usually surprised to know that arthritis is about as common as juvenile diabetes,” Stewart says.
 
Working with other physicians, advanced practice providers, physical and occupational therapists, psychologists, radiologists and many others, Scottish Rite’s Rheumatology team helps treat the whole child while supporting one’s hopes and dreams for an active, healthy life. Services provided include infusion therapy, digital X-ray and advanced imaging, orthoses or braces and lab services.

Many parents ask how did this happen. “I try to make it clear that there is nothing that someone did to cause this,” Stewart says. “The short story is that we don’t know how these conditions occur, and hopefully that’s something that science is going to lead us to discover at some point in the future.”
 
Her mother says she went through a lot of emotions learning about Kelaiah’s condition. “I was really taken aback because I thought, ‘oh, it’s arthritis?’ I thought that was something that you got when you were older,” she says. “As a mom, it was painful to hear because I know how much Kelaiah loves sports and how active she is, and all of her siblings are active in sports. That’s basically our life.”
 
For Kelaiah, telling her coaches and teammates led to more questions. “They didn’t know that it is for young people, and they didn’t get that it was my immune system attacking my body,” Kelaiah says. “It has nothing to do with my age.”
 
Kelaiah performs at a high level both athletically and academically, and her natural athletic talent and strong work ethic are driving her to pursue her dream of running NCAA Division I college track. “There’s a lot of competition and skill out there,” Kelaiah says. “People always say running is easy, that you are just running in an oval, but there’s a lot of technique and a lot of skills you need in order to be successful. It takes a lot of mental toughness.”
 
LIVING WITH JIA
Early intervention for JIA is crucial to avoid lasting effects of the condition. Once there’s a diagnosis, rheumatologists, patients and their families work together to control inflammation and keep flare-ups managed. “Initially it was really bad, and she was in a brace,” Tanisha says. “I was wondering, ‘would she ever be able to run again?’”
 
Some symptoms of JIA are fatigue, swollen and tender joints, pain and stiffness as well as fever and rashes. “I probably cry more than she knows I do because I wish I could take it away and help her, but I can’t,” Tanisha says. “I always tell her, ‘you’ve had more good days than bad days, and that’s life in general.’ What an opportunity to learn early on about the ups and downs in life, and that it’s all in how you deal with it.”
 
Stewart has prescribed various medications and injections, also called biologics, along the way to find the best treatment to extinguish the fires in Kelaiah’s body. “I feel very fortunate to live in an age when there are effective treatments for our patients and even more options coming down the pike,” Stewart says.
 
Getting the appropriate type and dosage of biologics has been working for Kelaiah, and with proper rest, good nutrition and hydration, she’s been able to keep training and advocate for herself out on the track.
 
“Because track is a demanding sport, a lot of runners come up with excuses trying not to run,”
Kelaiah says. “I honestly try not to use my knee as an excuse. But when it hurts, I’m like, ‘okay Kelaiah, you don’t want to make it worse,’ so I have to step up and tell my coach my knee is hurting,” she says. “That’s hard for me because I don’t like feeling that something is stopping me from being what I want to be.”
 
Overexertion or overtraining can exacerbate the condition. “A major issue that we see with our younger patients is that they push themselves past the point of comfort, not wanting to disappoint a coach or trainer and not knowing what their limits are,” Stewart says. “Finding your limits is going to help someone with arthritis gain more independence and to really listen to their body.”
 
SPRINTING INTO A BRIGHT FUTURE
Looking forward to upcoming events, Kelaiah continues to work hard each day to move toward her goals. “She’s had a really good year,” Tanisha says. “It’s just trial and error for us now.”
 
Stewart and the team at Scottish Rite continue monitoring her condition and providing support. “When we got to Scottish Rite, we really felt like they cared about us,” Tanisha says. “The care that you get there is just so wonderful. They let us talk about her accomplishments, and they want to know how she is doing.”
 
Those accomplishments are pretty impressive. She was selected by the Texas Girls Coaches Association to represent class 5A-6A schools as a member of the Texas All-Star Team. Her high school track team won district, area, regionals and state in the women’s 4 x 200 and the 4 x 400 relays and placed third in the 4 x 100 relay. Kelaiah competed at the Junior Olympics in 2021 in the 4 x 400 relay, with her team placing fourth.
 
Kelaiah had a strong showing at the most recent regional meet, a qualifier for the 2022 Junior Olympics in North Carolina in August. Her performances have successfully qualified her for the 4 x 100 and the 4 x 400 relays, as well as the 200- and 400-meter individual races, where she also set personal bests.
 
Stewart continues to be a big fan of Kelaiah’s. “She is a resilient young lady,” Stewart says. “She does not let anything stop her. I think just the fact that she’s pushed through all of her obstacles says so much about her.”
 
Kelaiah’s future is bright, and she feels like she’s getting the care she needs at Scottish Rite. “They’re going to get you right,” Kelaiah says. “They’re going to help you, and they’re going to do their best to help you with whatever you are going through,” she says. “It’s a very good support team. You are going to be okay.”
 
Read the full issue.

How Do I Know If My Patient Has Arthritis or a Related Condition?

How Do I Know If My Patient Has Arthritis or a Related Condition?

Key messages from a presentation by Lorien Nassi, M.D., at Coffee, Kids and Sports Medicine.

Watch the lecture
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To recognize and respond to patterns of symptoms and findings, a pediatric rheumatologist relies heavily on a medical history and physical exam. Imaging (e.g. ultrasound, MRI) is a dependable tool to help rule out other conditions and recognize active inflammation. With a more accurate diagnosis, rheumatologists can use specific disease patterns (instead of labs) to plan the appropriate targeted therapy rather than traditional approaches, which often relied on nontargeted therapies with higher toxicities (e.g., steroids.) In children, arthritis continues to be the number one cause of acquired disability and therefore deserves prudent recognition, classification and proper treatment.

Juvenile arthritis is frequently referred to as juvenile idiopathic arthritis (JIA). Once other causes of arthritis have been excluded, this condition may be diagnosed in individuals less than 16 years of age with a six-week history of arthritis in any one joint.

Key messages when considering JIA in a pediatric assessment:

  • If pain is the chief complaint or redness is present, it is less likely that JIA is the diagnosis.
  • Signs of systemic inflammation (e.g. fevers, weight loss) should be promptly evaluated to rule out other serious illness.
  • Imaging is frequently more accurate and may be more cost effective than lab work.
    • Several labs have false negatives and false positives.
    • Labs will need to be redrawn at the time of treatment.
    • Ultrasound vs MRI is preferred and is ideally read by a pediatric radiologist with musculoskeletal expertise.
  • Uveitis may by asymptomatic, but is an important finding that should be treated in order to avoid permanent vision loss.

Here were some questions Dr. Nassi addressed during the discussion: 

What are activity limitations for children with JIA?

  • Children taking Coumadin or those with c-spine involvement, should not play contact sports.
  • For others, if the activity doesn’t cause pain, no limitations are necessary.

Is there a role for physical therapy or occupational therapy in patients with arthritis?

  • For conditions such as scleroderma, reducing the risk of contractures may require focused treatment.
  • ​For most conditions, provided that targeted treatment is successful, there should be less of a need for therapy to maintain mobility.

When prescribing NSAIDS, do you prefer ibuprofen or Naproxen?

  • Naproxen is more convenient for families to provide twice daily and therefore may be more likely to be a successful treatment. Otherwise, there is no preference.

How do I know if a joint is actively inflamed and I need to refer?

  • Ultrasound, when evaluated by an experienced pediatric musculoskeletal radiologist, can frequently distinguish active inflammation from chronic synovial changes.

What are DMARDS?

  • Disease modifying antirheumatic drugs (e.g. methotrexate, sulfasalazine).

Is there a hereditary component to arthritis?

  • Though there are some markers showing associations, we have not identified any causes. Clearly, genetics are involved, but it’s just part of the story.

What is enthesitis-related arthritis?

  • Enthesitis is inflammation at the tendon or ligament insertion in a bone. Enthesitis-related arthritis is a condition that can present as a single joint complaint that may be initially diagnosed as an apophysitis (e.g. Sever’s disease, Osgood Schlatter’s). Though it is rare, the progression of this condition without proper treatment can result in permanent damage.

Pediatric rheumatology is a very unique and rare subspecialty, and we are pleased to have five of them on our staff at Scottish Rite for Children. This team sees patients at our locations in Dallas and Frisco.

Get to Know our SRH Staff: Chetna Godiwala, Rheumatology

Get to Know our SRH Staff: Chetna Godiwala, Rheumatology

What is your role at the hospital? 
I am a researcher for the Rheumatology department. I specifically work on the Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry. The CARRA registry seeks to understand the epidemiology, outcomes, etiology and biology of pediatric rheumatic diseases such as systemic supus erythematosus, juvenile idiopathic arthritis and juvenile dermatomyositis.
                                                                                 
What do you enjoy most about Scottish Rite Hospital?
I enjoy hearing about the success stories that have happened since the inception of Texas Scottish Rite Hospital for Children. I take pride in working at a hospital that gives the best care to its patients, with or without their ability to pay. I believe that every child should have the best childhood regardless of the medical diagnosis. And being part of the Scottish Rite Hospital team definitely helps make this a reality for our young patients!  
 
What was your first job? What path did you take to get here? How long have you worked here?
My first job was tutoring kids while I was in high school and college. Teaching has always been a passion of mine. The moment that I am able to help a student understand a concept is the most rewarding for me. This translates to my job today at the hospital. As a researcher, I am helping kids and families affected with rheumatoid diseases by collecting their outcomes to prescribed medications and correlate with their disease activity so we can one day find a cure. I have worked here for almost three months, and I have enjoyed every moment!
 
What are you currently watching on Netflix?
I am currently re-watching episodes of New Girl. The cast has a great chemistry and I’m always up for a good laugh.
 
Who would you most like to swap places with for a day?
If I were to swap places for a day, it would be probably with anyone from the TV show Friends. I love each of the characters and it would be kind of fun to hang out at a coffee shop all day.
 
What is a fun or interesting fact about your hometown?
I have lived most of my life in California. Not only is it my hometown, but also the home of Walt Disney Studios. My sister and I had Disneyland passes while we were in college and I would go almost monthly with a different group of friends. My favorite thing was to watch the show World of Color during the winter months, while drinking hot chocolate and eating their amazing churros. If you haven’t been yet, you must check it out. That combination is amazing for the California winter months.
What is your favorite thing to do when you’re not working? 
I love to get a good workout in and spend time with my husband, family and friends. My husband and I also love traveling together. Our next destination is Spain in May 2020 and we absolutely cannot wait. I also am a certified BollyX instructor, which is a HIIT workout.