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| Vol. 21, No. 17 |
| September 15, 1999 |
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Straight Talk About Curved Joints Help for Patients with Arthrogryposis by RONDA WENDLER Shriners Hospital for Children
Part 2 of 2
Treatment Once diagnosed, treatment should begin immediately after birth. Shriners Hospital utilizes a unique program suggested by Dr. G. Dean MacEwen at Alfred I. duPont Institute in Wilmington, Del. Dr. Douglas Barnes, assistant chief of staff at Shriners Hospital for Children, who completed his pediatric orthopedic fellowship under the supervision of Dr. MacEwen, is a proponent of the program's effectiveness. To begin, a team of health care specialists is assembled to work with the child and family from the newborn nursery to the teenage years, until skeletal growth is achieved. Orthopedic surgeons, physical and occupational therapists, and orthotists work together to help the child attain the greatest degree of limb mobility and function possible. Later, when the child enrolls in school, therapy may be provided in the school setting. The aggressive, early program begins immediately after birth with range of motion exercises designed to stretch and increase movement in the involved joints. Physical therapists teach parents how to passively exercise their children by stretching each individual joint four times daily, 30 minutes each session, for the first three months of life. Arms, legs, hands and feet are splinted and taped between exercise sessions to maintain the small, incremental gains in range of motion that are achieved each time. The splints will require frequent modifications by a therapist or orthotist as the range of motion increases and as the patient grows.
Although full ranges of motion are rarely, if ever, achieved, small increases can make a big difference in how the child can function with everyday activities, such as brushing teeth, putting on clothes and holding a pencil. Physical therapy also improves available muscle strength, which prepares the child for standing and walking. After three months, the program is modified with stretching exercises performed twice daily until the child achieves full skeletal growth in the teenage years. "The earlier the program is begun, the better the results achieved," Dr. Barnes says, noting that the treatment is intensive, extensive and expensive. Consequently, not every treatment facility provides this course of treatment. The parents' role in the child's treatment is crucial to the success of the early intervention program and beyond, Dr. Barnes says. "It is essential for parents and other caregivers to understand that intensive physical therapy and prolonged orthotic treatment will be necessary throughout the growth and development of the child," he emphasizes. Matthew Alaniz's father, Larry, quit his job as a schoolteacher when Matthew was born to stay home with his son and perform the necessary therapy. "It's like a job. You're on a schedule and you have a commitment to fulfill. But you're working on behalf of your child, not an employer," he says. Larry's efforts were rewarded when Matthew began walking at age 5, just before entering school. At about 8 months of age, surgeries may be performed to supplement the passive exercise program. Soft tissue surgeries release the tight, fibrous tissues around the joints, while osteotomies divide or remove bone to correct deformities. Months of stretching have enabled the skin to expand and stretch as needed for surgery, lessening the need for skin grafts. The hands and feet improve dramatically with surgery. Multiple complex surgeries may also be required at the knees, hips and feet so the child may stand. The newly attained position must be protected with braces worn throughout the growing years. How many surgeries a child will need depends upon the severity of his or her condition. Jennifer has had surgery on one hip, both knees and both feet. Peter has had three foot surgeries, one hand surgery, and a hernia repair. His "other" hand may require surgery in the future. Matthew has lost count, but believes he has had 19 operations - one for each year of his life. "No more surgeries for me ... I'm finished," he announces happily. Occupational therapists, too, are an important part of the treatment team. They help patients develop fine motor skills, and provide specially designed devices to help children feed and dress themselves. While Jennifer has made tremendous strides in overcoming her condition, she still has trouble brushing her hair, and must use a special long-handled brush to reach the back. Longer toothbrushes and bath brushes are also available, and hooks may be placed on walls to help children pull up pants. Small children should be encouraged to go barefoot indoors, to facilitate the use of feet for accomplishing tasks the hands cannot master, advises Becky Ligon, director of occupational therapy at Shriners Hospital. "Children with arthrogryposis are inventive and substitute functioning muscles for non-functioning ones. They surprise people with their independence," she says. What to expect In most cases, the outlook for those with arthrogryposis, particularly with amyoplasia, is a positive one. Because the condition does not worsen with age, therapy and other available treatments can bring about substantial improvement. The vast majority of children survive and thrive with normal longevity. Many excel because they are long-time experts at meeting and tackling challenges. Take, for example, Matthew, who in high school was student council president and is now an architecture student at the University of Houston. Despite a busy schedule and demanding course work, he still finds time to volunteer at Shriners Hospital every Wednesday. "I want to be an example for kids who have special challenges to overcome. I tell them `Never give up ... I made it and you can, too."'
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