Juvenile ankylosing spondylitis is a rare type of inflammatory arthritis that’s characterized by inflammation in the spine and joints as well as other body systems. It’s important to get a diagnosis if your child has symptoms of this condition.

Juvenile ankylosing spondylitis is a type of inflammatory arthritis affecting children. It’s a rare condition, but if your child is showing signs and symptoms, such as joint pain in the hips, knees, and heels, it’s important to get them checked by a doctor.

How do you know whether your child has the condition? Where would you get a diagnosis? And most importantly, what options are there for treatment?

Read on for everything parents need to know about juvenile ankylosing spondylitis, including causes, symptoms, diagnosis, treatment, and outlook.

Juvenile ankylosing spondylitis is part of a spectrum of juvenile idiopathic arthritis. It’s a condition characterized by inflammation in the spine and the joints, as well as other body systems.

Juvenile ankylosing spondylitis is relatively rare. According to the American Academy of Pediatrics, about 1% of the U.S. population has ankylosing spondylitis, and only about 10% to 20% of people with this condition receive a diagnosis in childhood.

Juvenile ankylosing spondylitis is often difficult for doctors to diagnose. It can sometimes take years for children to get a diagnosis.

However, early diagnosis is important. For some types of juvenile ankylosing spondylitis, early diagnosis and treatment may mean better outcomes for a child.

In children, symptoms of juvenile ankylosing spondylitis usually present differently than in adults. At first, children are more likely to have peripheral arthritis (joint pain in hips, knees, wrists, and ankles). On the other hand, adults usually have axial symptoms (spine and back pain) first.

Children typically have more severe symptoms of ankylosing spondylitis than adults. Their symptoms often develop gradually, over a few weeks or months. Pain often starts in the peripheral joints and then settles in the back and spine over a period of several years (about 5 to 10 years).

Common symptoms of juvenile ankylosing spondylitis may include:

  • pain and swelling in the hips, ankles, heels, toes, knees, rib cage, upper back, neck, and shoulders
  • reddish skin that may be warm to the touch
  • back pain, especially at night or when first waking
  • stiffness upon waking, after sitting, or after being inactive for long periods
  • fatigue, low grade fever, and appetite loss are possible
  • stooped posture that occurs over time
  • shortness of breath
  • inflammation in the digestive tract
  • inflammatory bowel disease
  • eye symptoms, including:
    • inflammation
    • pain
    • dry eyes
    • poor vision
    • light sensitivity

Experts aren’t completely sure what causes juvenile ankylosing spondylitis, but it’s thought that both genetic and environmental factors contribute.

Genetic factors

According to the Arthritis Foundation, 80% to 90% of children diagnosed with juvenile ankylosing spondylitis are positive for the HLA-B27 gene. This gene produces a protein on white blood cells called human leukocyte antigen B27 (HLA-B27).

People who have this protein are more likely to develop autoimmune diseases, like ankylosing spondylitis. It’s likely that other genes play a role as well.

Environmental factors

A 2015 study suggests environmental factors likely cause the condition, specifically changes in the gut microbiome caused by HLA-B27.

The theory is that HLA-B27 may cause a reduction in protective bacteria. Without these protective bacteria, the gut may be more susceptible to inflammation, which may contribute to disease progression.

Juvenile ankylosing spondylitis can be difficult for doctors to diagnose since it’s rare. Sometimes, it may take years to get a proper diagnosis.

If your child has symptoms of the condition, first visit your pediatrician. If they suspect juvenile ankylosing spondylitis or another form of arthritis, they will refer you to a pediatric rheumatologist. This doctor specializes in inflammatory arthritis.

There are only a small number of pediatric rheumatologists in the United States. These specialists are more likely to be part of an academic medical center. If there’s no pediatric rheumatologist in your area, a telemedicine consultation may be an initial option to consider.

It’s important to talk with a specialist because juvenile ankylosing spondylitis presents differently than adult ankylosing spondylitis.

To diagnose juvenile ankylosing spondylitis, a doctor will likely perform a few screening tests, including:

  • blood tests to look for HLA-B27, as well as other markers of disease
  • imaging tests, like MRIs, CT scans, X-rays, and ultrasounds, to look for signs of the condition

Juvenile ankylosing spondylitis can’t be cured, but you can manage symptoms and reduce disease progression with treatment. The earlier treatment is started, the better the overall outcome and quality of life for a child with juvenile ankylosing spondylitis.

Treatment involves a combination of medication, physical therapy, and lifestyle strategies, like exercise and dietary changes.

Medications commonly used to treat juvenile ankylosing spondylitis focus on reducing inflammation and decreasing pain. Options include:

  • biologics, such as tumor necrosis factor (TNF) inhibitors
  • nonsteroidal anti-inflammatory drugs (NSAIDs), like ibuprofen and naproxen, or prescription NSAIDs, like indomethacin, celecoxib, or diclofenac
  • disease-modifying antirheumatic drugs (DMARDs), like methotrexate and sulfasalazine
  • corticosteroids, like prednisone

There are also nondrug treatment options.

For instance, physical therapists can design exercises for people that help them manage pain, stay strong, and maintain bodily functions. Sometimes assistive devices may be recommended. Rarely, surgeries, such as hip replacements, are necessary for children with juvenile ankylosing spondylitis.

Staying active can help with stiff muscles and mobility. Some experts recommend sticking to an anti-inflammatory diet focused on whole foods, fruits, veggies, and fewer processed foods, but there’s less evidence for this recommendation.

Anyone can get juvenile ankylosing spondylitis, but certain groups may be more vulnerable:

  • Testing positive for HLA-B27 increases the risk.
  • Males are more likely to receive a diagnosis, but research suggests females are underdiagnosed.
  • Older children, ages 10 and above, are more likely to receive a diagnosis.
  • European children are more likely to have the condition.

Juvenile ankylosing spondylitis can be severe in children, especially when it’s not treated when symptoms first appear. It’s usually a more serious condition than other types of arthritis in children.

Most children who experience early symptoms of the disease go on to experience serious back and spinal issues within the first 5 years after receiving their diagnosis.

Proactive and aggressive treatment of the disease as early as possible help predict the best outcome for children.

That’s why organizations like the Academy of American Pediatrics are urging doctors to pursue early and rapid identification of children with any symptoms, and to treat them thoroughly and with all available treatment options.

Can juvenile ankylosing spondylitis cause digestive issues?

Yes, for some children with juvenile ankylosing spondylitis, their digestive tract can get inflamed, which may lead to inflammatory bowel disease. Symptoms include diarrhea and stomach pain.

What support is available for juvenile ankylosing spondylitis?

Support is vital for managing the challenges of juvenile ankylosing spondylitis. The Arthritis Foundation holds events throughout the year for families living with juvenile ankylosing spondylitis.

Teenagers can also participate in the foundation’s Peer2Peer program, which matches teens with young adult mentors.

Is posture important for children with juvenile ankylosing spondylitis?

Maintaining good posture can help manage symptoms and decrease pain. Children can avoid hunching over their computers or iPads. Urge your child to keep electronic devices at eye level instead.

Children can also avoid sitting for long periods whenever possible.

Juvenile ankylosing spondylitis is rare, but it can be severe in children. If your child has any symptoms, seek a diagnosis. If possible, seek care from a specialist, such as a pediatric rheumatologist.

Although juvenile ankylosing spondylitis can be serious for children, when diagnosed early, your child can have a more favorable outcome.

Don’t hesitate to advocate for your child’s needs and be in close touch with your child’s healthcare team if you have further questions or concerns.