Legal and Medical Resources Resources to Empower Cerebral Palsy Families
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Many parents of children diagnosed with Cerebral Palsy are given little explanation of the cause, severity or future implications for the disorder. Surprisingly, many children may not receive a diagnosis of cerebral palsy until school age, even though there may have been circumstances at birth that indicated risk of Cerebral Palsy. Many pediatricians take a “wait and see” attitude when parents present issues of delayed development.
Most cerebral palsy conditions are caused by lesions on the brain due to injury that occurred during pregnancy or birth (congenital) or in the months or years following birth (acquired Cerebral Palsy). While symptoms range from mild to severe, the condition does not get worse as your child gets older. Depending on the level of severity however, a child may be at risk for complications related to Cerebral Palsy such as developmental delays, failure to thrive, joint contractures, scoliosis or seizures.
Known as the most common form of Cerebral Palsy, Spastic Cerebral Palsy causes tightness in the muscles that leads to difficulty in controlling movement. Patients have stiff and jerky movements and will often have difficulty letting go of something in their hand. Many children with spastic cerebral palsy necessitate interventions in the forms of medications, therapies or surgical interventions to manage the spasticity and prevent secondary complications that can occur as a result of chronic spasticity.
Athetoid Cerebral Palsy (fluctuating tone) is a neurological disorder resulting in a variety of movement disorders that can include involuntary and uncontrolled or unwanted movements. A child may be shaky and unsteady and may make frequent, abrupt and jerky movements. Due to the mixed tone involved in Athetoid Cerebral Palsy, a child may experience difficulty with fine motor skills and maintaining torso control.
Documented as a less common form of Cerebral Palsy, Ataxic Cerebral Palsy causes jerky, and uncoordinated movements due to a disturbed sense of balance and depth perception. A child with Ataxic Cerebral Palsy may exhibit mixed tone, and experience challenges with controlled movements.
Depending on the level of severity, Cerebral Palsy can result is a variety of healthcare concerns. Parents need to be made aware of all possible complications and healthcare concerns that can result from their child’s brain injury. Some of these healthcare concerns may involve inadequate oral motor skills and a child’s compromised ability to consume adequate fluids and nutrients. Untreated, severe oral motor dysfunction can result in dehydration and failure to thrive. Other healthcare concerns may include Childhood Osteoporosis, movement disorders, GERD, contractures of the extremities and scoliosis to name a few.
These affect the nerves that control voluntary muscles. “Neuro” indicates the origin of the disorder is at a neurological (brain) level. Untreated, neuromuscular issues can severely impact a child’s quality of life and future development.
Not all children with cerebral palsy suffer from seizures, just as not all children who experience seizures have cerebral palsy. There are many types of seizures. Seizures differ depending on the portion of the brain involved. Seizures that occur in only one part of the brain or hemisphere are known as “Focal seizures”. Seizures that occur in both hemispheres are referred to as “Generalized seizures”. Seizures occur as a result of abnormal and excessive discharges of nerve impulses originating from certain brain cells. Some of this excessive activity reach the skeletal muscle fibers and trigger the violent contractions witnessed with a variety of seizures.
Range of Motion (ROM) is the measurement used to describe the degree of flexion in a joint (how far it can bend) and extension (how far it can stretch or extend). ROM is usually measured by the number of degrees. There are specific perimeters of measurement in determining normal range-of-motion. Many children, especially children with spastic cerebral palsy experience limited range of motion. Children with hemiplegia cerebral palsy may experience limited range of motion involving the extremities on one side of their body while children with quadrapalegia may experience range of motion issues with all extremities including the trunk, putting them at risk for spinal scoliosis.
Not all children with Cerebral Palsy require medications though many do. Today, there are many medications and combinations of medications, delivered orally, via a feeding tube or through an implanted pump that can help in the management of a variety of conditions such as seizures, spasticity or GI medical issues.
Surgical intervention is normally a last resort when medications, therapy or other interventions fail to have a positive impact on a condition. Surgical intervention may be necessary to loosen tight muscles and release fixed joints (contractures) or to bring relief to spasm and help with orthopedic issues such as hip dislocation.
Physical Therapy is a branch of medicine directed at the rehabilitation of muscles and the muscular skeletal system. 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. 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. 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.
Speech Therapy is the treatment of communication disorders, regardless of the origin. Therapists that work in the field of communication disorders are known as speech therapists and speech-language pathologists. Therapy can consist of a series of exercises and drills to strengthen the muscles involved in speech, and improve oral motor skills needed for speech as well as swallowing. Speech therapy may also include sign language and the use of picture symbols or augmented and alternative communication devices.
Occupational therapy (OT) and rehabilitation deals primarily with the many muscles responsible for wrist, hand, and finger movements, muscles involved in facial expressions, and tongue movement and swallowing reflexes. Occupational therapists are trained in the rehabilitation of these muscle groups to help patients acquire or improve daily living skills needed for self-care, work, and play. Occupational therapy uses a regiment of exercises, adaptive equipment, and training to help a child achieve the fine motor and life skills needed in work and play, further assisting a child in realizing goals and independence.
Also referred to as “talk therapy” Psychotherapy can improve behavioral issues, provide encouragement, improve self-esteem, reinforce positive messages and stop negative behaviors.
There are a variety of alternative therapies the families may investigate in the management of their child’s Cerebral Palsy. The following is an example of the most popular therapies pursued:
Therapeutic (subthreshold) electrical stimulation, also called neuromuscular electrical stimulation (NES), pulses electricity into the motor nerves to stimulate contraction in selective muscle groups. Many studies have demonstrated that NES appears to increase range of motion and muscular strength.
Threshold electrical stimulation, which involves the application of electrical stimulation at intensities too low to stimulate muscle contraction, is a controversial therapy. Studies have not been able to demonstrate its effectiveness or any significant improvement with its use.
Hyperbaric oxygen therapy. Some children have cerebral palsy as the result of brain damage from oxygen deprivation. Proponents of hyperbaric oxygen therapy propose that the brain tissue surrounding the damaged area can be “awakened” by forcing high concentrations of oxygen into the body under greater than atmospheric pressure.
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