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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Chronic Inflammation and What it Means in a Child

boy with hurt kneeWHAT COULD IT BE?
“Chronic inflammation can be manifest in many ways,” says Dr. Boon. “Signs parents might see in their child include fatigue, fever, rash, joint pain or swelling, sores in their mouth, chest pains and abdominal pain. Start with your pediatrician. Make sure infection is not the cause. The primary care doctor can run some lab tests and refer you to a specialist as necessary. These symptoms are not specific, but can be early signs of chronic inflammation, including chronic forms of juvenile arthritis, lupus, inflammation of the skin and muscles, or other forms of vasculitis (inflammation that affects the blood vessels). There are also forms of inflammation that occur after a child has an infection, which may not be chronic or lifelong.”

TREATMENT OPTIONS
To help with pain and swelling, children can take medications like ibuprofen or naprosyn, says Dr. Boon. Children with only a few joints affected but with persistent joint swelling may have a steroid injected to the joint, possibly as a one-time treatment because it’s long lasting, it may be the only treatment that is needed. Children with many joints affected, including the small joints of the hand, are often treated with systemic medications taken orally or injected just under the skin; the injections can be once a week to every two weeks, says Dr. Boon. “We also help children deal with their pain by using heat and cold packs and occupational and
physical therapy.”

THE EFFECT ON GROWTH
If left untreated, chronic inflammation in children can cause fatigue, anemia and muscle aches, among other health problems. Children might feel achy and feel like they have the flu all the time. It can also affect a child’s growth rate. “If growth is stunted, the child may have to take growth hormone supplements to help them grow,” says Dr. Boon.

FAST FACTS

  • Number of people in the U.S. with some form of arthritis or chronic joint pain: Almost 70 million
  • Annual cost to the U.S. Economy for arthritis and related conditions, including juvenile arthritis: Almost $128 billion
  • Prevalence of children in Orange County with pediatric arthritis: 5-10 in 10,000

View the full feature on Kids and Chronic Inflammation

Dr. Boon
Dr. Sheryl J. Boon
CHOC Pediatric
Rheumatologist

PHYSICIAN FOCUS: DR. SHERYL BOON

Dr. Boon is the chief of the Rheumatology Division at CHOC Children’s. She completed her pediatric rheumatology fellowship and pediatric residency training at CHOC and also served as chief resident of the pediatric residency training program. In addition to her medical degree, Dr. Boon earned a master’s degree in public health nutrition from UCLA. Dr. Boon has special interests in lupus, vasculitis and pulmonary issues in patients with autoimmune disease.

Dr. Boon’s philosophy of care: “We try to deliver excellent, comprehensive care to the children who have autoimmune diseases in Orange County and the outlying areas.”

EDUCATION:
University of California, Irvine College of Medicine

BOARD CERTIFICATIONS:
Pediatric Rheumatology

More about Dr. Boon

This article was featured in the Orange County Register on May 27, 2014, and was written by Amy Bentley.

Living with Juvenile Arthritis

While it can’t be cured, juvenile arthritis can be well managed with long-term medications and therapy, and affected children can live normal lives, a CHOC Children’s rheumatologist says.

“There are such good medications available and there are some new biologic medications that are targeted and effective for treating most forms of arthritis in children,” says Dr. Sheryl J. Boon, division chief of rheumatology at CHOC. “The outlook now for kids with arthritis is much better than it was 20 years ago.”

Children with juvenile arthritis can be treated by their pediatrician or a specialist. Treatment goals are to control inflammation and swelling, relieve pain, prevent joint damage and help the child to move and function as much as possible, Dr. Boon says.

And there’s no reason that children with a form of juvenile arthritis can’t play sports and do all those activities other kids enjoy, she adds.

In fact, parents should try to make life as normal as possible for their child with juvenile arthritis, Dr. Boon advises. While they should try avoiding activities that cause extra stress on the joints, families shouldn’t dwell on the disease.

“We want the kids to feel like they are normal,” Dr. Boon says. “We don’t want them to feel disabled. Most of our kids take the normal P.E. classes and can do everything all the other kids can do.”

CHOC uses a team approach to treat children with arthritis, and includes care from physicians, nurses, a social worker, physical therapist and occupational therapist, Dr. Boon says.

“The social worker meets with all the family members and helps them cope with the chronic illness and any school-related issues, like making sure the kids have extra time between classes if they need it or no physical education if they need it,” she says.

The goal is to keep children active with arthritis.

“We can send the children to get physical and occupational therapy so they can get exercises and get moving again,” Dr. Boon says.

Related articles:

  • 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 ...
  • Chronic Inflammation and What it Means in a Child
    “Chronic inflammation can be manifest in many ways,” says Dr. Boon. “Signs parents might see in their child include fatigue, fever, rash, joint pain or swelling, sores in their mouth, ...
  • Growing Pains in Kids
    “Growing pains are real because many children experience musculoskeletal pain,” says Dr. Andrew Shulman, a CHOC Children’s Pediatric Rheumatologist (Arthritis Specialist). “It’s a very common symptom but not a good ...

Growing Pains in Kids

boy in doctors officeARE “GROWING PAINS” REAL

“Growing pains are real because many children experience musculoskeletal pain,” says Dr. Andrew Shulman, a CHOC Children’s Pediatric Rheumatologist (Arthritis Specialist). “It’s a very common symptom but not a good name because we don’t think it’s related to growth. Typically, you will have a toddler or school-age child who in the evening after an active day or prolonged walking will complain of pain often in the ankles or legs. It can be in the calves, thighs or behind the knees. Sometimes the child will wake up in the middle of the night in pain, sometimes in tears. Usually the pain responds to massage, which the child finds soothing.”

CAUSES AND JOINT PROTECTION
“We think the most common cause for this type of musculoskeletal pain is flexible joints. This means the ligaments that hold the bones together at the joint are a little bit loose. They can flex and extend through a longer range of motion. Repetitive movement at the extremes of range of motion appears to cause strain and discomfort,” says Dr. Shulman, adding that the pain can also have orthopedic causes for which a child can be evaluated. “It helps if these kids stay active so they can get stronger. Strengthening the muscles that support the joints provides protection for the joints.”

ARTHRITIS IN CHILDREN
“Kids do get arthritis. It’s not a common condition but it is certainly not rare,” says Dr. Shulman. According to the Arthritis Foundation:

  • Arthritis is a complex family of musculoskeletal disorders consisting of more than 100 different conditions that affect joints, bones, muscles, cartilage and other connective tissues, hampering or halting physical movement.
  • Juvenile arthritis is an umbrella term used to describe the many autoimmune and inflammatory conditions that can develop in children ages 16 and younger.
  • The cause for most forms of juvenile arthritis remains unknown.

Fast Facts:

  • Number of children underage 18 affected by pediatric arthritis and rheumatologic conditions in the U.S.: 294,000
  • Number of children worldwide with juvenile arthritis; most are probably undiagnosed: 1.7-8.4 million
  • Annual cost to the U.S. economy for arthritis and related conditions, including juvenile arthritis: Almost $128 billion

View the full feature on Kids and Growing Pains

Dr. Andrew Shulman
Dr. Andrew Shulman
Arthritis Specialist
and Rheumatologist

PHYSICIAN FOCUS: DR. ANDREW SHULMAN

Dr. Shulman specializes in the diagnosis and management of pediatric autoimmune and inflammatory conditions. As a pediatric rheumatologist, Dr. Shulman cares for patients with juvenile arthritis, lupus and other autoinflammatory diseases. He also has expertise in treating patients with Pain Amplification Syndrome, a condition where a patient has abnormal pain sensitivity. Dr. Shulman completed his residency in Pediatrics and fellowship in Pediatric Rheumatology at Boston Children’s Hospital and the University of Texas Southwestern Medical Center in Dallas.

Dr. Shulman’s philosophy of care: “My philosophy of care is to provide a multidisciplinary patient and family centered approach in the evaluation of musculoskeletal symptoms and the treatment of autoimmune and inflammatory conditions.”

EDUCATION:
University of Texas Southwestern Medical Center, Dallas, Texas

BOARD CERTIFICATIONS:
Pediatric Rheumatology

More about Dr. Shulman

This article was featured in the Orange County Register on May 27, 2014, and was written by Amy Bentley.

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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    “Growing pains are real because many children experience musculoskeletal pain,” says Dr. Andrew Shulman, a CHOC Children’s Pediatric Rheumatologist (Arthritis Specialist). “It’s a very common symptom but not a good ...

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.

Related articles:

  • 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 ...
  • Chronic Inflammation and What it Means in a Child
    “Chronic inflammation can be manifest in many ways,” says Dr. Boon. “Signs parents might see in their child include fatigue, fever, rash, joint pain or swelling, sores in their mouth, ...
  • Living with Juvenile Arthritis
    While it can’t be cured, juvenile arthritis can be well managed with long-term medications and therapy, and affected children can live normal lives, a CHOC Children’s rheumatologist says. “There are such ...