Living with Arthritis: Carson’s Story

Seventeen-year-old Carson comes from a close-knit family of athletes and had been playing baseball for a decade when consistent, unexplained pain left his family stumped and looking for answers. Countless physical therapy and orthopedic appointments, plus endless X-rays, filled the next 18 months. When an MRI of his spine lead the radiologist reading his images to assume they were from a middle-aged person who’d played a lifetime of contact sports, rather than a 15-year-old boy, finally the family had a clue that Carson’s pain was not just an overuse injury.

At the time, pre-diagnosis, he was traveling a couple hours roundtrip every few days for orthopedic appointments related to wrist, elbow and shoulder pain.

He was ultimately referred to Dr. Andrew Shulman, a CHOC Children’s pediatric rheumatologist, and finally Carson’s family had the answers they’d been seeking for years. Carson was diagnosed with Juvenile Ankylosing Spondylitis, a form of arthritis that affects the spine and sites where muscles, tendons and ligaments attach to bones in the body. He was also diagnosed with Pain Amplification Syndrome, a condition in which patients develop abnormal pain sensitivity. The nervous system processes normal sensations from movement and environmental experience as pain signals. Carson’s family had never heard of Pain Amplification Syndrome before he was diagnosed.

“Dr. Shulman is such a powerful presence in my life,” says Carson. “The way that he explains things, he makes everything so much easier to understand. He relates directly to me.”

juvenile arthritis

Looking back as far as eighth grade, a lot of Carson’s issues were tied to this condition. He had tried everything from water therapy to hypnosis, but nothing was working. Then Dr. Shulman recommended acupuncture and Carson’s mom Andrea says Ruth McCarty, director of Chinese medicine and acupuncture at CHOC, was ‘unbelievable in getting Carson to a good place.’

Carson’s care team also includes physical therapist Robin Beauregard and pediatric gastroenterologist Dr. Mitchell Katz.

Carson’s family is also a key component of his care team.

“Dealing with these diagnoses is a team effort,” says Carson. “My dad carries me up the stairs when my Pain Amplification Syndrome flares up and I can’t walk, and I squeeze his hand during Humira injections. My mom helps me mentally, and she’s made this so much easier to manage. Dr. Shulman has given us a path forward.”

Despite still making his school’s baseball team while fighting a dual diagnosis, Carson could no longer cope with the week or two of pain that came with playing a single inning. Now he works out daily in a gym whether he’s experiencing a flare up or not, which helps with both diagnoses. To fill the void that competitive baseball left, he often plays catch with his friends and former teammates.

“Carson’s journey with arthritis is a powerful one. It speaks to the importance of diagnosing arthritis, and the outcomes we can achieve with therapy,” says Dr. Shulman. “His experience shows that multi-disciplinary care has been transformative.”

Learn more about rheumatology services at CHOC Children’s.

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Relieving Aches from Growing Pains

Growing_PainsIt’s not unusual for kids to feel some aches and pains as they grow up.

Joint flexibility is the most common cause of musculoskeletal pain in children and is often responsible for what is known as “growing pains.”

Still, it can be just as hard on mom and dad as it is on their child to see her in tears from achy ankles or throbbing knees. The good news is there are many ways to manage this pain.

Dr. Andrew Shulman, a rheumatologist and arthritis specialist at CHOC Children’s, has some tips for treating growing pains:

  • Massaging and rubbing sore legs helps to soothe the discomfort.
  •  Strengthening exercises under the guidance of a physical therapist can help.  Strengthening the muscles that support the joints provides protection for the joints.
  • A physical therapist can help the child if he or she has flat feet, a condition wherein the ankles turn inward and flatten the arch in the foot. This can put stress on ankles, knees and legs of children who are flexible. Children with flat feet also can wear shoes with better arch support or orthotic inserts to help correct the turning inward of the feet.
  • Over-the-counter medications like acetaminophen and ibuprofen can help, but in many cases they have no effect.

Growing pains are normal, but parents should also ensure that the pain isn’t accompanied by swelling, fever, injury or any other more severe symptoms. If it is, the hurt may be more than a growing pain.

“If the pain is frequent or interfering with activities, then it’s time to evaluate if the pediatrician should be called,” Dr. Shulman says. “We’re available to help the pediatrician. Certainly if arthritis is suspected, we want to be involved.”

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Five Arthritis Myths Busted

Picture a person with arthritis. Do you see someone elderly with gray hair, glasses and knitting in tow?arthritis_myths

Think again: Arthritis is not just a grandmother’s disease. In fact, one in 10 of every 10,000 children will be diagnosed with Juvenile Idiopathic Arthritis every year in the United States, and an estimated 70,000 children have the condition nationwide.

“There are a lot of misconceptions about what arthritis is,” says Dr. Andrew Shulman, a CHOC Children’s rheumatologist.

And the misconception that arthritis is a disease of the elderly isn’t the only myth surrounding this condition.

Just in time for National Arthritis Awareness Month, Dr. Shulman helps debunk other misconceptions associated with arthritis.

Joint pain doesn’t always mean arthritis

The principal symptoms of arthritis are swelling, stiffness and limited range of motion. Pain is only sometimes a part of the symptoms felt by a person with arthritis, Dr. Shulman says.

“We have classic literature from our field that show that if a patient is referred to a rheumatologist with joint pain, they were more likely to be diagnosed with something other than arthritis,” he says.

Dr. Shulman says the term arthritis has incorrectly become a catchall phrase for joint pain.

“I think it’s one of these situations where the term has become common parlance for joint pain or joint issues,” he says. “There’s some overlap between the colloquial use of the term and what it actually is.”

Arthritis is not a precise diagnoarthritis_myths2sis

Dr. Shulman says that arthritis is not a diagnosis, and instead a symptom. A good comparison, he says, is a cough.

“A lot of things can cause a cough – lots of different things involving different organ systems,” Dr. Shulman says. “Arthritis is a finding and symptoms related to joint inflammation, but it can have many causes and is not a precise diagnosis.”

Many things such as an infection, medication exposure, or allergic reaction can trigger arthritis, Dr. Shulman says. In those cases, the arthritis can surface and then go away.

However, in some cases, the symptoms are persistent and chronic.

To confirm if a child has a form of juvenile arthritis, symptoms must have begun before the patient turned 16 and the arthritis must have been present in a particular joint for at least six weeks. Also, physicians must exclude other possible conditions before confirming a diagnosis of juvenile arthritis , Dr. Shulman says.

Arthritis is not diagnosed with lab tests

Arthritis is diagnosed primarily through patient history and examination findings, Dr. Shulman says. Once arthritis is confirmed, laboratory tests can help to characterize the arthritis.

Dr. Shulman says patients complaining of joint pain are often found to have abnormal test results, leading a physician to believe the patient has arthritis. But once the patient sees a rheumatologist, arthritis can be ruled out.

“Another way of saying it is that these tests can yield a false positive,” Dr. Shulman explains.

Arthritis is not a rare condition

Though arthritis is unusual in children, the condition is not rare, Dr. Shulman says.

Arthritis is more common in children than type I diabetes, he says.

Further, according to the Arthritis Foundation, more children have arthritis than juvenile diabetes, cystic fibrosis, cerebral palsy and muscular dystrophy combined.

Learn more about rheumatology at CHOC Children’s.

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