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

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

by | Sep 14, 2022 | Rheumatology

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?

by | Sep 13, 2021 | Rheumatology

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.

Share Your Story: A Place of Healing

Share Your Story: A Place of Healing

by | Dec 10, 2020 | Rheumatology

Meet Norah, a patient seen by our Rheumatology experts. Learn more about her journey below.

Blog written by Norah’s mom, Julie of Dallas, TX.

During the summer of 2018 we brought our 3-year-old daughter, Norah, to Scottish Rite for Children with unexplained weakness. Previously a rough and tumble toddler, Norah had stopped running and playing. She requested to be carried everywhere. Her whole demeanor was subdued, and we were desperate to know what was weakening our spunky girl.

The Rheumatology team at Scottish Rite immediately recognized that Norah was suffering from a rare form of childhood arthritis, called Juvenile Dermatomyositis (JDM). JDM is rare enough that many children go months and even years before getting a diagnosis, but Dr. Nassi needed only minutes. The skilled and compassionate nurses began an aggressive treatment course of IV medications that day to slow and reverse the weakness that had overtaken her. 

The initial months of treatment required a very difficult adjustment for our family of five, but it became clear that Scottish Rite was going to have our backs, both medically and emotionally. At her weakest, Norah could not lift her head off the bed or sit without support on her sides. Her swallowing muscles weakened, requiring a nasogastric feeding tube. A port was placed in her chest for her many doses of IV medications. Absolutely everything Norah needed medically, Scottish Rite was able to provide. It was a much needed one-stop-shop for us during a stressful time. For many appointments, Norah and I would stay in her exam room while specialist after specialist rotated in and out to give her the care she needed. Dieticians, occupational therapists, speech therapists, developmental disabilities practitioners, mental health counseling, our heroes in Child Life – the list goes on and on. The level of teamwork across specialties is an inspiration.

It is also an inspiration to know that this level of care is offered at Scottish Rite to all patients, regardless of their ability to pay. 

Now, Norah can run, jump and play again with her two older brothers, plus her new kindergarten friends. She had some hard days and surely those memories are difficult and persistent, but her overall take away is that Scottish Rite is a place of healing and loving attention. Our appointments are less frequent now, but it always feels like we are visiting friends. From the moment we walk in, to the smell of popcorn, to the final minutes when we allow her to finally spend the dime she has been saving all month for the gumball machine, Scottish Rite makes what could be a traumatic day into a treat for her. We credit that atmosphere of positivity mixed with expert care, for her miraculous recovery and continued progress.

DO YOU HAVE A STORY? WE WANT TO HEAR IT! SHARE YOUR STORY WITH US.

Juvenile Dermatomyositis

Juvenile Dermatomyositis

by | Nov 17, 2020 | Rheumatology

What is juvenile dermatomyositis (JDM)?

  • juvenile = this condition happens in children
  • dermato = skin
  • myositis = muscle

Symptoms of JDM include muscle inflammation (myositis) that results in weakness, and skin (dermato) rash. Other symptoms may include:

  • Getting tired easily.
  • Trouble walking, playing, brushing your hair or going up and down stairs.
  • Problems eating and drinking.

There are several different steps to confirm diagnosis. Below is what you can expect if your child potentially has JDM: 

Lab

  • Your child will need blood work. This will help the doctor know what is going on inside the body.
  • Once in the lab, your child will sit in a chair and a large rubber band or strap will be wrapped around their arm (also known as a tourniquet).
  • Then the lab technician will place a needle in their arm.
  • It will be very quick, and once finished, a colorful bandage wrap will put around the arm.

MRI (Magnetic Resonance Imaging)

  • An MRI is also needed to take pictures so that the doctor can see inside your child’s body.
  • The patient will need to go inside a big tube that is shaped like a donut.
  • The machine makes loud banging noises when taking pictures, but we offer the child the option of watching a movie or listening to music while in the MRI.
  • The most important thing is that the patient stays still during the test.

Muscle Biopsy

  • To help the doctor see what is going on inside your child’s body in a different way, a muscle biopsy is done.
  • A biopsy helps our team see a small part of the body. They will remove a small piece of tissue while your child is asleep.
  • After the biopsy, your child will wake up and have a small spot that may be sore. Our team will teach you how to take care of it and keep it clean.

Swallow Study

  • Your doctor has decided that they need see how your child eats and drinks.
  • A feeding expert will take pictures while your child eats and drinks to see how the throat muscles work.
  • During the study, the patient will eat and drink lots of different things. The food and drinks may look different, but they will taste like they always do.

Treatment Options

Steroids

  • While on steroids, you may notice changes to your child’s body. Examples include:
    • Hungrier than usual.
    • Your child may notice a funny taste in their mouth.
    • Change in their mood.
    • Their body may also change. Such as their face becoming puffy or changes to the skin.

IV (Intravenous) Start

  • This means that your child will go to a special room where a nurse will put a small straw in their arm or hand.
  • The medicine will then go through the straw directly into their body.
  • This way of giving medicines helps our team get your child healthy much faster than with other medicines.
  • If the child is coming back for another day of medicine, they may go home with the straw or IV in place. It will be wrapped in a colorful bandage wrap.

What else is can I do to stay healthy?

  • Wear sunscreen every day.
  • Take the prescribed medicines given by the doctor.
  • Eat healthy foods.

Learn more about the Rheumatology department. 

Healio Rheumatology: Splinting After Intra-articular Injection

Healio Rheumatology: Splinting After Intra-articular Injection

by | Aug 7, 2019 | Press Coverage, Rheumatology

Patients with juvenile idiopathic arthritis who were placed in a splint to encourage rest following intra-articular corticosteroid injection, or IACI, demonstrated no significant benefit against recurrent arthritis compared with those who were not given a splint, according to findings published in Pediatric Rheumatology.
 
Heather Benham, DNP, APRN, CPNP-PC, of Texas Scottish Rite Hospital for Children, recently spoke with Healio Rheumatology about her research and if different post-care regimens impact the outcome of the injection.
 
“Steroid injections are an important part of the treatment regimen for JIA, especially those with oligoarticular JIA,” Benham says. “We don’t know if the post-care regimen impacts the outcome of the injection — response of the joint to the steroid — or the risk for adverse events — local dermal atrophy.”
 
Read the full story here.