Your child’s primary physician can monitor for emerging orthopedic issues. Physical and occupational therapists can access orthopedic issues, manage therapy needs, and recommend optimal positioning equipment. A physical medicine and rehabilitation specialist or orthopedist can monitor for musculoskeletal issues. Complex care and palliative care clinicians can assess baseline medical status and provide support for considering surgical treatment options.
Contractures; Changes to arms, hands, legs and feet
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Muscle movement is activated when the brain sends a message to the nerves to move. In children with SNI, the message is impaired and eventually the elasticity of the muscle is replaced with hard, fibrous tissue. A contracture is the abnormal position of a joint that is caused when a muscle loses its stretch and becomes tight. This process can happen over time, with small changes in a child’s range of motion, or it can come on suddenly. It is important to watch for signs of potential problems, as these issues tend to worsen over time and contribute to other problems.
A contracture is a shortening of the muscle, tendons or ligaments that prevents normal movement. They are formed when muscles remain too tight for a long period of time. The most common cause of contracture is spasticity. However, very low muscle tone can also result in a loss of flexibility and physical movement. Untreated contractures may result in joint deformity, such as the curvature of the spine. They can also cause pain. Some contractures are visible: the neck or back may pull to one side, arms or legs pull toward the torso, or toes or fingers may curl. More often, contractures are assessed through an examination of the range of motion of the muscles and joints.
Physical and occupational therapy and a regular stretching routine can strengthen the muscles to increase range of motion and minimize the impact of contractures on the skeletal system. Your child’s doctor or therapist may recommend that your child wear a hand, leg, or truncal brace. These are usually prescribed to improve or maintain flexibility, minimize contractures, and/or to provide external support during physical activity. Braces that are used during the daytime may be different from ones used during the night. Daytime braces are usually used to stabilize and improve ease of doing an activity, while nighttime braces are usually used for prolonged stretching.
It may take time for your child to build tolerance to their braces. The orthopedist or physical medicine and rehabilitation specialist who prescribes and fits the braces can provide guidance on how to introduce them and on how they should be worn. Your child’s physical or occupational therapists can also help monitor impacts of bracing. Pressure areas may develop, so it is important to check your child’s skin before and after you put on the braces. If you notice that the redness persists, the brace may need to be adjusted. Braces also need to be refitted as your child grows.
Bracing or a stretching cast may be combined with injections of botulinum toxin (Botox) to reduce tension and minimize spasms. Contractures that are too severe may preclude brace use and a surgical intervention may be recommended. In this case, the tight muscles are surgically cut, and the tendons lengthened to allow for greater range of motion.
Proper positioning, especially for children who may not be ambulatory, can also help minimize the impact of contractures on the skeletal system. Physical and occupational therapists can recommend positioning accommodations and equipment.
Discovering possible problems, and moving quickly and thoughtfully to preventative treatment, is very empowering. You know your child best and will likely be the first to notice changes, however subtle. But if you don’t, remember that you are part of a team that stands by you and your child.
If your child needs an orthopedic assistive device (e.g., brace or stander) or mobility equipment (e.g., wheelchair or gait trainer) you may experience renewed, or deepened, anticipatory grief. This is natural, and your palliative care team or a therapist can support you in processing your feelings. Keep in mind that the goal of the intervention is to improve your child’s mobility, independence, and quality of life. You as a parent are doing the very best you can.
