What is juvenile ankylosing spondylitis in children?

Juvenile ankylosing spondylitis is a type of arthritis. It affects the spine and the places where the muscles, tendons, and ligaments attach to the bone. Ankylosing means stiff or rigid. Spondyl means spine. It refers to inflammation.

JAS tends to start in the teens and 20s.Itaffects boys and men more than girls and women. JAS is a long-term (chronic) condition. Some people will have periods of time where the disease is not active or mild (remission).Others will have ongoing symptoms.

What causes juvenile ankylosing spondylitis in a child?

Researchers don't know the exact cause of JAS. It tends to run in families. A gene marker called HLA-B27 is found in almost all Caucasians and half of African Americans who have the disease. But only a very small number of people with the marker will develop the disease. Because of this, researchers don’t fully know if the gene marker increases the risk for the disease.

Which children are at risk for juvenile ankylosing spondylitis?

A child may be more at risk for JAS if they have:

• Family members with JAS

• The gene marker HLA-B27

What are the symptoms of juvenile ankylosing spondylitis in a child?

Symptoms can happen a bit differently in each child. They tend to come and go over time.They can include:

• Pain in the back, joints, buttocks, thighs, heels, or shoulders

• Early morning stiffness that gets better with activity

• Trouble standing up straight

• Trouble taking a deep breath

• Loss of appetite

• Weight loss

• Tiredness (fatigue)

• Fever

• Eye pain, redness, and sensitivity to light

The symptoms of JAS can look like other health conditions. Make sure your child sees their healthcare provider for a diagnosis.

How is juvenile ankylosing spondylitis diagnosed in a child?

Because the symptoms are similar to those in other conditions, JAS can be hard to diagnose.

The healthcare provider will ask about your child’s symptoms and health history. They may also ask about your family’s health history. They will give your child a physical exam. Your child may also have tests, such as:                                                                                                                                         

• X-rays. This test uses a small amount of radiation to make images of tissues in the body. X-rays may show changes in the spine and joints. Changes may not show up in the early stages.

• Other imaging tests. Other tests that makemore detailed images of the body may be done. This may include MRI. This test uses large magnets and a computer to create images of tissues in the body.

• Blood tests.  There are no specific tests for JAS. But general blood tests may be done, such as:

  • Erythrocyte sedimentation rate (ESR or sed rate). This test is done to see if there is inflammation in the body. A child with JAS may have a high ESR level, but this can also be due to other causes.

  • Detection of (HLA-B27) antigen. This is a blood test for certain autoimmune conditions. HLA-B27 is an antigen. If this antigen is present, it may mean there is some type of autoimmune disease. Like the ESR, the test result isn’t specific to JAS and may have another cause.

The diagnosis of JAS can be difficult. Your child's healthcare provider may advise that they be seen by a healthcare provider who specializes in joint diseases (rheumatologist).

How is juvenile ankylosing spondylitis treated in a child?

The goals of treatment for JAS are to:

• Reduce pain and stiffness

• Prevent deformities

• Help your child be as active as possible

Treatment will depend on your child’s symptoms, age, and general health. It will also depend on how severe the condition is. Treatment may include:

• Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, to reduce pain and inflammation

• Short-term use of corticosteroids to reduce inflammation

• Disease-modifying antirheumatic medicines (DMARDS) to slow down inflammation in the body

• Biologic medicines, such as anti-TNF medicines,to slow down inflammation in the body

• Regular exercise, including exercises that strengthen back muscles

• Physical therapy

What are the possible complications of juvenile ankylosing spondylitis in a child?

Possible complications of JAS include:

• Joint damage

• Bones of the spine and chest that grow together (fuse)

• Abnormal forward curve of the spine (kyphosis)

• Trouble breathing because of changes in the spine and chest (restrictive lung disease)

• Breaks in the bones of the spine

• Heart, eye, and kidney problems

How can I help my child live with juvenile ankylosing spondylitis?

JAS is a long-term (chronic) condition. Some people will have periods of time in which the disease is not active or mild (remission) while otherswill have ongoing symptoms.

Early diagnosis and treatment are important to lessen or delay complications. Help your child:

• Stay as active as possible

• Balance activity with rest

• Eat a healthy diet

Also make sure your child stops smoking or never starts. Smoking has been linked to having more problems with JAS.

Work with your child's healthcare team to create an ongoing treatment plan that’s best for your child. 

When should I call my child's healthcare provider?

Call your child’s healthcare provider if your child has joint and back pain, morning stiffness, or other symptoms of JAS.

If your child has JAS, call the healthcare provider if your child has any of these:

• Eye symptoms

• Trouble breathing

• Other new symptoms

• Symptoms that get worse

Key points about juvenile ankylosing spondylitis in children

• JAS is a type of arthritis. It affects the spine and the places where the muscles, tendons, and ligaments are attached to bone.

• Symptoms can include pain and stiffness in the back, joints, buttocks, thighs, heels, or shoulders.

• The diagnosis of JAS can be difficult. Your child's healthcare provider may advise that they be seen by a healthcare provider who specializes in joint diseases (rheumatologist).

• The goals of treatment for JAS are to reduce pain and stiffness and help your child be active.

• Treatment may include medicines, exercise, and physical therapy.

• JAS is a long-term (chronic) condition. Some people will have periods of time in which the disease is not active or mild (remission) while others will have ongoing symptoms.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

• Know the reason for the visit and what you want to happen.

• Before your visit, write down questions you want answered.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.

• Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are and when they should be reported to your child's healthcare provider.

• Ask if your child’s condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if your child does not take the medicine or have the test or procedure.

• If your child has a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.