Physical Therapy Basics, Rights and Cautions - Cerebral Palsy

Physical Therapy Basics, Rights and Cautions

By Lee Vander Loop

Some children with cerebral palsy require physical therapy. Some don’t. Once the diagnosis is made, and the type of cerebral palsy is determined, a team of health care professionals will work to identify specific impairments and needs, and then develop an appropriate plan to address the core disabilities that affect the child’s quality of life.

Physical Therapy is a branch of medicine directed at the rehabilitation of muscles and the muscular skeletal system.  Physical therapy helps improve mobility, and uses a variety of equipment and exercises to help patients achieve or improve abilities. There is no standard therapy that works for every individual with cerebral palsy.

Children who require physical therapy will be referred to a private therapy group and, when they’re older, also receive physical therapy at school. Therapists who work with children are called Pediatric Physical Therapists, and are accredited through theAmerican Physical Therapy Association.   Physical therapy programs use specific sets of exercises and activities to work toward two important goals: preventing weakening or deterioration of the muscles that aren’t being used (disuse atrophy), and keeping muscles from becoming fixed in a rigid, abnormal position (contracture).  Early detection and management of muscular problems is crucial in early childhood development.  If left untreated, muscular issues where cerebral palsy is concerned can lead to contractures and long- term debilitation, compromising your child’s ability to walk, bend, dress, and possibly degrading a child’s quality of life long term.

• Physical therapy, usually begun in the first few years of life or soon after the diagnosis is made, is a cornerstone of cerebral palsy treatment.
• Resistive exercise programs (also called strength training) and other types of exercises are often used to increase muscle performance, especially in children and adolescents with mild cerebral palsy.
• Daily exercise routines keep muscles that aren’t normally used moving and active and less prone to wasting away.  Exercise also reduces the risk of contracture, one of the most common and serious complications of cerebral palsy.

Children normally stretch their muscles and tendons as they run, walk, and move throughout the day.  This insures that their muscles grow at the same rate as their bones. But in children with cerebral palsy, spasticity prevents muscles from stretching.  As a result, their muscles don’t grow fast enough to keep up with their lengthening bones.  The muscle contractures that result can set back the gains in function they’ve made.  Physical therapy alone or in combination with special braces (called orthotic devices) helps prevent contractures by stretching spastic muscles.

What Parents Need to Know

• Not all children with cerebral palsy require physical therapy
• Although vital in some cases,  physical therapy alone may not be adequate in preventing contractures and complications of some movement disorders
• In the case of severe spastic cerebral palsy, the maximum benefits of physical therapy can only be realized when the muscle spasticity is addressed and reduced to the extent possible
• With cases of Ataxic or Athetoid cerebral palsy, physcal therapy is a vital tool in addressing muscle strengthening and range of motion issues.

Your Child’s Rights

You and your child have the right to certain expectations. The Model Practice Act for Physical Therapy developed by The Federation of State Boards of Physical Therapyaddresses the standards, rules, regulations and patient consumer rights in regard to physical therapy.

• Team approach –When working with your child’s physical therapist you should be made to feel like a part of a team.  It is a team approach between you, your primary care physician, the therapist and your child.
• Communication – Your child’s physical therapist should be communicating openly with you as to what they are doing, what muscles they are working with and why they are taking the approach they have chosen.  You should also expect the therapist to communicate to your child.  Most young children are anxious and fearful with strangers.  The therapist should be working and communicating with your child to win your child’s trust and confidence.  Regardless of whether your child is capable of comprehension or capable of communication, the therapist should be communicating with your child and treating your child with respect, patience and compassion. If you meet a therapist that treats your child like an object and not a human being, find another therapist.
• Teaching - Your child’s physical therapist is not only working with your child but should also be teaching you so that you can be consistent in your child’s care and contribute to help your child achieve and maintain goals in the absence of the therapist.

Questions to Ask

• Communication works both ways.  You should be communicating any concerns and questions you have to the therapist.  If necessary, keep a journal and note problems and challenges you see your child may be experiencing between therapy sessions
• Ask the therapist what you can do between therapy sessions to help your child maintain any progress realized
• Ask how often you should work with your child and the duration of each session
• If your child has been prescribed adaptive equipment, inquire as to how often you should use the equipment and the duration of each session
• Ask about what adverse side effects you should be aware of. For instance, in the case of adaptive or custom orthopedic equipment, AFOs, wheelchairs, standers and similar equipment, you should watch for any chaffing, pressure sores or skin break down indicating that an adjustment needs to be made.

Compassion and Patience

• You have the right to expect compassion and patience from your child’s therapist.  If you feel a therapist is being overly aggressive and seems to be traumatizing your child… STOP THEM.
• The term “No pain, No gain” DOES NOT apply to children with cerebral palsy.  Effective physical therapy should not be painful.  If a therapist is being overly aggressive and causing pain, this is contradictive and will result in your child relating therapy to pain.

Accountability

• Your child’s therapist should have written goals.  You should be provided with the results of the first assessment and goals the therapist hopes to achieve in addressing issues and challenges your child may be experiencing.
• In the case of Range of Motion (the extent to which a muscle/limb can be extended) the therapist should do periodic measurements to assess your child’s range of motion, and provide you with goals for improvement and notify you of progress or regression. Perhaps your child has contractures of his/her lower extremities and a range of motion of 60%. The therapist should provide you with goals for achieving a higher percentage of range and a time line for achieving those goals.

Coordination

• You have the right to expect your child’s therapist to work and coordinate with your child’s educators in developing your child’s Indepedent Education Program (IEP)and to be an active member of your child’s  IEP team.
• In the case of a private physical therapist not associated with your child’s school, your child’s therapist should be communicating with your child’s educators and involved in the IEP process to ascertain that the goals created are being worked on in your child’s educational setting.
• The therapist should also be coordinating and communicating with your primary care physician in obtaining physician’s orders for any needed adaptive equipment or devices and should keep the physician informed of your child’s progress or challenges.
• If the therapist feels your child would benefit from custom made orthopedic shoes (AFOs), or other adaptive equipment, it’s the responsibility of the therapist to communicate with the physician the need and to followup in acquiring custom equipment/devices deemed medically necessary.

Continuity of Care

• You have the right to demand, and the therapist has an obligation to provide, continuity of care in relation to your child’s therapy. Continuity of care means the same therapist works with and follows your child through out the duration of the therapy process until your child either no longer needs the therapy and has reached set goals, or it’s determined that your child has achieved the maximum benefits of the therapy.
• If your therapist belongs to a group and you’re finding they send a different therapist with each session, tell them this is not acceptable and if necessary, change agencies.

BE AWARE – Controversial physical therapies

Not all forms of physical therapy are considered effective for children with cerebral palsy.

• “Patterning” is a physical therapy based on the principle that children with cerebral palsy should be taught motor skills in the same sequence in which they develop in normal children.  In this controversial approach, the therapist begins by teaching a child elementary movements such as crawling — regardless of age – before moving on to walking skills. Some experts and organizations, including the American Academy of Pediatrics, have expressed strong reservations about the patterning approach because studies have not documented its value.
• Experts have similar reservations about the Bobath technique (which is also called “neurodevelopmental treatment”), named for a husband and wife team who pioneered the approach in England .   In this form of physical therapy, instructors inhibit abnormal patterns of movement and encourage more normal movements. The Bobath technique has had a widespread influence on the core physical therapies of cerebral palsy treatment, but there is no evidence that the technique improves motor control.  The American Academy of Cerebral Palsy and Developmental Medicine reviewed studies that measured the impact of neurodevelopmental treatment and concluded that there was no strong evidence supporting its effectiveness for children with cerebral palsy.
• Conductive education, developed in Hungary in the 1940s, is another physical therapy approach that at one time appeared to hold promise.  Conductive education instructors attempt to improve a child’s motor abilities by combining rhythmic activities, such as singing and clapping, with physical maneuvers on special equipment.  The therapy, however, has not been able to produce consistent or significant improvements in study groups.