When kids or teens experience aching joints and stiffness it may be more than growing pains. It may be arthritis of the spine and other joints, a condition called ankylosing spondylitis.
Ankylosing spondylitis (AS) is a progressive form of spinal arthritis that typically develops in the late teens and early twenties. It causes pain and inflammation in the lower part of the body, such as the pelvis, hips, knees and ankles, and can also affect the eyes, heart, lungs, kidneys and bowel. The disease may result in fusing of the spine, hips and other joints, resulting in decreased mobility and, in severe cases, a forward-stooped posture.
The exact cause of AS is unknown, but genetics does play a key role. Much as in adult-onset disease, the genetic marker HLA-B27 is often found in those with juvenile-onset disease.
Ankylosing spondylitis strikes people very young in life and is more prevalent than multiple sclerosis, cystic fibrosis and Lou Gehrig's disease combined. The Spondylitis Association of America estimates that at least 500,000 people in the U.S. suffer from AS, but likely far more because the disease is under-recognized.
Diagnosing ankylosing spondylitis in children and young adults can be difficult and often be delayed for years, leading to serious problems in adulthood. Understanding the signs and symptoms of AS are important in order to ensure accurate diagnosis and early treatment. With early diagnosis and proper treatment, children can experience significant relief of symptoms and potentially minimize or avoid disease-related disability later in life.
Symptoms of Ankylosing Spondylitis
While it is common for children to have 'growing pains,' symptoms of joint aches and pains that last for weeks are unusual. Though back pain is the primary symptom of AS in adults, children often experience other symptoms of the disease.
Common symptoms of juvenile-onset AS include:
* Ongoing or recurrent joint pain, including neck or back pain
* Pain around knees, bottom of feet and ankle
* Pain and stiffness that is usually worse in the morning
* Pain and stiffness that improves with exercise and worsens with immobility
* Swelling in the joints or other areas of the body, including where ligaments like the Achilles tendon attaches to the bone
Parents who notice these symptoms in children should speak with their child's physician and determine if they should see a pediatric rheumatologist, a doctor with special training in rheumatic diseases (arthritis) in children.
Early diagnosis and proper treatment of AS in children can minimize pain and stiffness and help reduce risk of disability or deformity. Diagnosis of AS is performed by a pediatric rheumatologist. In order to make a diagnosis, the doctor will evaluate the child's history of symptoms, perform a complete physical exam, order laboratory tests, and then be able to decide upon a course of treatment that will sometimes involve bringing in other medical experts. These can include an eye doctor (ophthalmologist), bowel doctor (gastroenterologist) and sometimes a skin doctor (dermatologist). Diagnosis can be difficult because the symptoms are sometimes episodic and unpredictable. However, it is important to get a correct diagnosis as soon as possible in order to begin treatment.
X-rays are seldom useful in the diagnosis of AS in children and can be difficult to interpret in teenagers since the bones are growing along the joints. The physician will also ask careful questions about, and examine for, inflammation/pain--specifically enthesitis (iinflammation of the area where a ligament or tendon attaches to the bone). He or she may also test for good spinal mobility and tenderness in the sacroiliac (SI) joints (the joints at the base of the spine where the spine meets the pelvis), as well as check movement with breathing.
A history of symptoms is also important in making the diagnosis. This can include checking the family history of AS and related diseases since heredity does play a factor. It is important to note that there is no specific laboratory test to diagnose the disease. Blood tests show that children with AS do not have rheumatoid factor or antinuclear antibodies common in other types of chronic childhood arthritis. Also, a positive test for the HLA-B27 genetic marker correlates with the presence of AS in a child with arthritis. Sometimes, children may encounter other problems such as Crohn's disease and ulcerative colitis inflammation of the intestine), uveitis or iritis (inflammation of the eye) or psoriasis (severe skin rash).
New, effective medical options are available for patients with ankylosing spondylitis. The treatment regimen should be individualized according to how severe the disease is and whether there are complications. Generally, treatment should consist of education and counseling, physical therapy and exercise, as well as medication.
Impact of Disease
Even in its mild forms, AS can affect a child's normal daily routine. However, children can and should remain active and involved in physical activities. Low impact sports are more favorable than sports that produce high joint stress.
Information on ankylosing spondylitis can be found by contacting the Spondylitis Association of America. For more than 20 years, the SAA has dedicated all of its resources to funding programs and research that directly benefit the AS community. The SAA is a driving force in national research efforts to find the cure. For more information on AS and the SAA, visit www. spondylitis.org or call 800-777-8189.
Robert W. Warren, M.D., Ph.D., M.P.H., is chief of rheumatology services at Texas Children's Hospital and associate professor of pediatrics at Baylor College of Medicine. Jane Bruckel is co-founder and chief executive officer of the Spondylitis Association of America.
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