Juvenile Ankylosing Spondylitis (JAS) in Children
What is juvenile ankylosing spondylitis?Juvenile ankylosing spondylitis is a type of arthritis. It affects the spine and the places where the muscles, tendons, and ligaments are attached to bone. Ankylosing means stiff or rigid. Spondyl means spine. Itis refers to inflammation. JAS affects boys and men more than girls and women. It usually occurs between the ages of 17 and 35. JAS is a long-term (chronic) condition. Some people will have periods of time in which the disease is not active or mild (remission). Others will have more symptoms ongoing.
What causes juvenile ankylosing spondylitis?Researchers do not know the exact cause. It tends to run in families. A gene marker called HLA-B27 is found in almost all Caucasians and half of 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.
Who is at risk for juvenile ankylosing spondylitis?
A child may be more at risk for JAS if he or she has:
- Family members with JAS
- The gene marker HLA-B27
What are the symptoms of juvenile ankylosing spondylitis?
Symptoms can occur a bit differently in each child. They tend to come and go over time, and 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)
- Eye pain, redness, and sensitivity to light
The symptoms of juvenile ankylosing spondylitis can be like other health conditions. Make sure your child sees his or her healthcare provider for a diagnosis.
How is juvenile ankylosing spondylitis diagnosed?
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. He or she may also ask about your family’s health history. He or she 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 create images of tissues in the body. X-rays may show changes in the spine and joints. Changes may not be show up in the early stages.
- Other imaging tests. Other tests that create 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 have 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 he or she be seen by a doctor who specializes in joint diseases (rheumatologist).
How is juvenile ankylosing spondylitis treated?
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 medicine (NSAIDs), to reduce pain and inflammation
- Short-term use of corticosteroids, to reduce inflammation
- Disease modifying antirheumatic medicines (DMARDS) such as methotrexate, to slow down inflammation in the body
- Biologic medicines such as infliximab or etanercept, to slow down inflammation in the body
- Regular exercise, including exercises that strengthen back muscles
- Physical therapy
What are possible complications of juvenile ankylosing spondylitis?
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 due to changes in the spine and chest (restrictive lung disease)
- Breaks in the bones of the spine
- Heart, eye, and kidney problems
Living 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). Others will have more symptoms ongoing.
Early diagnosis and treatment are important in order to lessen or delay complications. Make sure to 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
- Juvenile ankylosing spondylitis 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 he or she be seen by a doctor 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). Others will have more symptoms ongoing.
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.
- 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.