Caring for a child with arthritis
This material is presented mainly for parents of a child with arthritis.
As parents, you carry much of the responsibility for the health care and
emotional well-being of your child with arthritis. You will be the ones
to:
- make sure she sees all members of her health-care team as needed
- see that she takes her medications as prescribed
- watch for any side effects the drugs may cause
- help her do exercises to relieve pain and stiffness
- provide encouragement and support to her and other family members
- work with teachers and school officials to make sure her needs are
met
For this reason, it is very important for parents to know as much
as possible about their child's arthritis and its care, as well as the
effects it can have on family life. This information provides a starting
point for discussions with your child's health-care team.
You may feel a little overwhelmed by all the information presented here.
The impact of juvenile arthritis on a particular child may be mild, moderate,
or severe. This information tries to cover the whole range. Please remember
that your child may never experience all the symptoms described or have
to take many of the drugs mentioned. They are presented for the sake of
completeness.
Basics of juvenile arthritis
The word arthritis refers to inflammation (that is, swelling, heat, and
pain) involving the joints.
The most common form of arthritis in children is Juvenile Rheumatoid Arthritis
(JRA). However, children may also be affected by arthritis as a feature
of other diseases, including:
- Systemic lupus erythematosus: a chronic inflammatory disease characterized
by fever and rash that may attack organs such as joints, kidneys, the
brain, lungs, and heart.
- Juvenile dermatomyositis: a disease that causes a skin rash and weak
muscles in children, and may be accompanied by swollen joints.
- The spondyloarthropathies of childhood: diseases in children that
involve the spine. In some (but not all) children with these diseases,
a protein called HLA-B27 is found on the white blood cells. The spondyloarthropathies
of childhood include:
- Ankylosing spondylitis: a type of arthritis which primarily
affects the spine and hips. It usually occurs in males.
- Reiter's syndrome: a form of arthritis that may cause inflammation
of the urinary tract, inflammation of the eyelids, mouth ulcers, and/or
skin rash.
- B-27 Arthritis: a form of arthritis that occurs more often in
older boys and affects only a few joints--usually the back, and large
joints of the legs such as hips, knees, and ankles. It occurs more often
in children who inherit the HLA-B27 protein. If particular changes are
seen in X-rays, B-27 arthritis may be reclassified as Ankylosing Spondylitis.
- Psoriatic arthritis: a type of arthritis that may occur with
the skin condition, psoriasis. It affects both boys and girls.
- Scleroderma: a disease that can affect the skin, joints, blood
vessels, and internal organs.
- Inflammatory bowel (Crohn's) disease: a disease that can affect
the intestines, causing diarrhea and abdominal pain. It can be associated
with arthritis and fever; these sometimes appear before the digestive
symptoms.
Juvenile Rheumatoid Arthritis (JRA) affects about 71,000 children in
the United States. It is a disease of the joints that may also affect
other organs.
JRA is often a mild condition which causes few problems, but in severe
cases it can produce serious complications. Its signs and symptoms may
change from day to day, even from morning to afternoon. Joint stiffness
and pain may be mild one day but become so severe the next that the
child cannot move without great difficulty.
Periods when the arthritis is particularly active are called "flares".
There are at least three forms of JRA. Each form begins in a different
way and has different signs and symptoms. The three forms are:
- Polyarticular JRA: this type affects five or more joints ("poly"
means several or many and "articular" means joint)
- Pauciarticular JRA: this type affects four or fewer joints ("pauci"
means few)
- . Systemic JRA: this type affects both the joints and the internal
organs ("systemic" means internal organs and other body parts
are involved)
Prognosis
Juvenile rheumatoid arthritis is a chronic disease--one that may last
for many years. Eventually, there are good chances that your child will
get well and experience no serious, permanent disability. Children with
JRA can usually keep up with school and many social activities. Some
changes may need to be made when the child is in a flare or if there
has been joint damage.
Sometimes, the signs and symptoms of JRA may go away. When this happens,
it is called a remission. A remission may last for months, or years,
or even forever. But no one can be sure this will happen in your child.
While most children with JRA do well in the long run, parents should
be aware of possible long-term consequences. Children with pauciarticular
JRA have a higher risk of chronic eye inflammation. Some children with
polyarticular or systemic JRA may have serious joint problems or develop
other long-term complications, such as decreased growth.
There is no fast and simple solution to JRA. The most important thing
you can do is work with your doctor and other health professionals to
manage the disease and keep it .
|
