Parents of Children with Cerebral Palsy - You Deserve Answers
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Medical News and Latest Cerebral Palsy Treatments MEDICAL NEWS News release issued by John Wiley & Sons, Inc. Most Perinatal Strokes Lead To Neurological Disorders
By Gary White Courtney Fuller looks as if she could either be undergoing some medieval torture or training to become an astronaut. Actually, elements of both scenarios apply as the 9-year-old girl stands inside a metal cage, her body encased in a corset-like suit that's tethered to the bars by elastic cords. Spectrum of Gross Motor Function in Extremely Low Birth Weight
Children With Cerebral Palsy at 18 Months of Age Studies Currently Seeking Patients: http://clinicaltrials.gov/search/term=Cerebral%20Palsy LATEST TREATMENTS With early and ongoing treatment the effects of CP can be reduced. Many children learn how to get their bodies to work for them in other ways. For example, an infant whose CP keeps him from crawling may be able to get around by rolling from place to place. Children younger than three years old can benefit greatly from early intervention services. Early intervention is a system of services to support infants and toddlers with disabilities and their families. For older children, special education and related services are available through the public school system to help each child achieve and learn. Typically, children with CP may need different kinds of therapy, including: • Physical therapy (PT), which helps the child develop stronger muscles such as those in the legs and trunk. Through PT, the child works on skills such as walking, sitting, and keeping his or her balance. • Occupational therapy (OT), which helps the child develop fine motor skills such as dressing, feeding, writing, and other daily living tasks. • Speech-language pathology (S/L), which helps the child develop his or her communication skills. The child may work in particular on speaking, which may be difficult due to problems with muscle tone of the tongue and throat. The members of the treatment team for a child with cerebral palsy should be knowledgeable professionals with a wide range of specialties. A typical treatment team might include: • A physician, such as a pediatrician, a pediatric neurologist, or a pediatric physiatrist, trained to help developmentally disabled children. This physician, often the leader of the treatment team, works to synthesize the professional advice of all team members into a comprehensive treatment plan, implements treatments, and follows the patient's progress over a number of years. • An orthopedist, a surgeon who specializes in treating bones, muscles, tendons, and other parts of the body's skeletal system. An orthopedist might be called on to predict, diagnose, or treat muscle problems associated with cerebral palsy. • A physical therapist, who designs and implements special exercise programs to improve movement and strength. • An occupational therapist, who can help patients learn skills for day-to-day living, school, and work. • A speech and language pathologist, who specializes in diagnosing and treating communication problems. • A social worker, who can help patients and their families locate community assistance and education programs. • A psychologist, who helps patients and their families cope with the special stresses and demands of cerebral palsy. In some cases, psychologists may also oversee therapy to modify unhelpful or destructive behaviors or habits. • An educator, who may play an especially important role when mental impairment or learning disabilities present a challenge to education. Individuals who have cerebral palsy and their family or caregivers are also key members of the treatment team, and they should be intimately involved in all steps of planning, making decisions, and applying treatments. Studies have shown that family support and personal determination are two of the most important predictors of which individuals who have cerebral palsy will achieve long-term goals. The child may also find a variety of special equipment helpful. For example, braces (also called AFO’s) may be used to hold the foot in place when the child stands or walks. Custom splints can provide support to help a child use his or her hands. A variety of therapy equipment and adapted toys are available to help children play and have fun while they are working their bodies. Activities such as swimming or horseback riding can help strengthen weaker muscles and relax the tighter ones. New medical treatments are being developed all the time. Sometimes surgery, Botox injections, or other medications can help lessen the effects of CP, but there is no cure for the condition. Too often, physicians and parents may focus primarily on an individual symptom--especially the inability to walk. While mastering specific skills is an important focus of treatment on a day-to-day basis, the ultimate goal is to help individuals grow to adulthood and have maximum independence in society. In the words of one physician, "After all, the real point of walking is to get from point A to point B. Even if a child needs a wheelchair, what's important is that they're able to achieve this goal." A child with CP can face many challenges in school and is likely to need individualized help. Fortunately, states are responsible for meeting the educational needs of children with disabilities. For children up to age three, services are provided through an early intervention system. Staff members work with the child's family to develop what is known as an Individualized Family Services Plan, or IFSP. The IFSP will describe the child's unique needs as well as the services the child will receive to address those needs. The IFSP will also emphasize the unique needs of the family, so that parents and other family members will know how to help their young child with CP. Early intervention services may be provided on a sliding-fee basis, meaning that the costs to the family will depend upon their income.
For school-aged children, including preschoolers, special education and related services will be provided through the school system. School staff will work with the child's parents to develop an Individualized Education Program, or IEP. The IEP is similar to an IFSP in that it describes the child's unique needs and the services that have been designed to meet those needs. Special education and related services, which can include PT, OT, and speech-language pathology, are provided at no cost to parents. In addition to therapy services and special equipment, children with CP may need what is known as assistive technology. Examples of assistive technology include: • Communication devices, which can range from the simple to the sophisticated. Communication boards, for example, have pictures, symbols, letters, or words attached. The child communicates by pointing to or gazing at the pictures or symbols. Augmentative communication devices are more sophisticated and include voice synthesizers that enable the child to "talk" with others. • Computer technology, which can range from electronic toys with special switches to sophisticated computer programs operated by simple switch pads or keyboard adaptations. The ability of the brain to find new ways of working after an injury is remarkable. Even so, it can be difficult for parents to imagine what their child's future will be like. Good therapy and handling can help, but the most important "treatment" the child can receive is love and encouragement, with lots of typical childhood experiences, family, and friends. With the right mix of support, equipment, extra time, and accommodations, all children with CP can be successful learners and full participants in life. Physical, Behavioral, and Other Therapies Therapy -- whether for movement, speech, or practical tasks -- is a cornerstone of cerebral palsy treatment. The skills a 2-year-old needs to explore the world are very different from those that a child needs in the classroom, or a young adult needs to become independent. Cerebral palsy therapy should be tailored to reflect these changing demands. Physical therapy usually begins in the first few years of life, soon after the diagnosis is made. Physical therapy programs use specific sets of exercises to work toward two important goals: Preventing the weakening or deterioration of muscles that can follow lack of use (called disuse atrophy) and avoiding contracture, in which muscles become fixed in a rigid, abnormal position. Contracture is one of the most common and serious complications of cerebral palsy. A contracture is a chronic shortening of a muscle due to the abnormal tone and weakness associated with cerebral palsy. A muscle contracture limits movement of a bony joint, such as the elbow, and can disrupt balance and cause loss of previous motor abilities. Physical therapy alone, or in combination with special braces (sometimes called orthotic devices), works to prevent this complication by stretching spastic muscles. For example, if a child has spastic hamstrings (tendons located behind the knee), the therapist and parents should encourage the child to sit with the legs extended to stretch them. Another goal of some physical therapy programs is to improve the child's motor development. A widespread program of physical therapy that works toward this goal is the Bobath technique, named for a husband and wife team who pioneered this approach in England. This program is based on the idea that the primitive reflexes retained by many children with cerebral palsy present major roadblocks to learning voluntary control. A therapist using the Bobath technique tries to counteract these reflexes by positioning the child in an opposing movement. So, for example, if a child with cerebral palsy normally keeps his arm flexed, the therapist would repeatedly extend it. A second such approach to physical therapy is "patterning," which is based on the principle that motor skills should be taught in more or less the same sequence that they develop normally. In this controversial approach, the therapist guides the child with movement problems along the path of normal motor development. For example, the child is first taught elementary movements like pulling himself to a standing position and crawling before he is taught to walk--regardless of his age. 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. Physical therapy is usually just one element of an infant development program that also includes efforts to provide a varied and stimulating environment. Like all children, the child with cerebral palsy needs new experiences and interactions with the world around him in order to learn. Stimulation programs can bring this valuable experience to the child who is physically unable to explore. As the child with cerebral palsy approaches school age, the emphasis of therapy shifts away from early motor development. Efforts now focus on preparing the child for the classroom, helping the child master activities of daily living, and maximizing the child's ability to communicate. Physical therapy can now help the child with cerebral palsy prepare for the classroom by improving his or her ability to sit, move independently or in a wheelchair, or perform precise tasks, such as writing. In occupational therapy, the therapist works with the child to develop such skills as feeding, dressing, or using the bathroom. This can help reduce demands on caregivers and boost self-reliance and self-esteem. For the many children who have difficulty communicating, speech therapy works to identify specific difficulties and overcome them through a program of exercises. For example, if a child has difficulty saying words that begin with "b," the therapist may suggest daily practice with a list of "b" words, increasing their difficulty as each list is mastered. Speech therapy can also work to help the child learn to use special communication devices, such as a computer with voice synthesizers. Behavioral therapy provides yet another avenue to increase a child's abilities. This therapy, which uses psychological theory and techniques, can complement physical, speech, or occupational therapy. For example, behavioral therapy might include hiding a toy inside a box to reward a child for learning to reach into the box with his weaker hand. Likewise, a child learning to say his "b" words might be given a balloon for mastering the word. In other cases, therapists may try to discourage unhelpful or destructive behaviors, such as hair pulling or biting, by selectively presenting a child with rewards and praise during other, more positive activities. As a child with cerebral palsy grows older, the need for other types of therapy and other support services will continue to change. Continuing physical therapy addresses movement problems and is supplemented by vocational training, recreation and leisure programs, and special education when necessary. Counseling for emotional and psychological challenges may be needed at any age, but is often most critical during adolescence. Depending on their physical and intellectual abilities, adults may need attendant care, living accommodations, transportation, or employment opportunities. Regardless of the patient's age and which forms of therapy are used, treatment does not end when the patient leaves the office or treatment center. In fact, most of the work is often done at home. The therapist functions as a coach, providing parents and patients with the strategy and drills that can help improve performance at home, at school, and in the world. As research continues, doctors and parents can expect new forms of therapy and better information about which forms of therapy are most effective for individuals with cerebral palsy.
Physicians usually prescribe drugs for those who have seizures associated with cerebral palsy, and these medications are very effective in preventing seizures in many patients. In general, the drugs given to individual patients are chosen based on the type of seizures, since no one drug controls all types. However, different people with the same type of seizure may do better on different drugs, and some individuals may need a combination of two or more drugs to achieve good seizure control. Drugs are also sometimes used to control spasticity, particularly following surgery. The three medications that are used most often are diazepam, which acts as a general relaxant of the brain and body; baclofen, which blocks signals sent from the spinal cord to contract the muscles; and dantrolene, which interferes with the process of muscle contraction. Given by mouth, these drugs can reduce spasticity for short periods, but their value for long-term control of spasticity has not been clearly demonstrated. They may also trigger significant side effects, such as drowsiness, and their long-term effects on the developing nervous system are largely unknown. One possible solution to avoid such side effects may lie in current research to explore new routes for delivering these drugs. Patients with athetoid cerebral palsy may sometimes be given drugs that help reduce abnormal movements. Most often, the prescribed drug belongs to a group of chemicals called anticholinerics that work by reducing the activity of acetylcholine. Acetylcholine is a chemical messenger that helps some brain cells communicate and that triggers muscle contraction. Anticholinergic drugs include trihexyphenidyl, benztropine, and procyclidine hydrochloride. Occasionally, physicians may use alcohol "washes"--or injections of alcohol into a muscle--to reduce spasticity for a short period. This technique is most often used when physicians want to correct a developing contracture. Injecting alcohol into a muscle that is too short weakens the muscle for several weeks and gives physicians time to work on lengthening the muscle through bracing, therapy, or casts. In some cases, if the contracture is detected early enough, this technique may avert the need for surgery. In addition, a number of experimental drug therapies are under investigation. Surgery Surgery is often recommended when contractures are severe enough to cause movement problems. In the operating room, surgeons can lengthen muscles and tendons that are proportionately too short. First, however, they must determine the exact muscles at fault, since lengthening the wrong muscle could make the problem worse. Finding problem muscles that need correction can be a difficult task. To walk two strides with a normal gait, it takes more than 30 major muscles working at exactly the right time and exactly the right force. A problem in any one muscle can cause an abnormal gait. Furthermore, the natural adjustments the body makes to compensate for muscle problems can be misleading. A new tool that enables doctors to spot gait abnormalities, pinpoint problem muscles, and separate real problems from compensation is called gait analysis. Gait analysis combines cameras that record the patient while walking, computers that analyze each portion of the patient's gait force, plates that detect when feet touch the ground, and a special recording technique that detects muscle activity (known as electromyography). Using these data, doctors are better equipped to intervene and correct significant problems. They can also use gait analysis to check surgical results. Because lengthening a muscle makes it weaker, surgery for contractures is usually followed by months of recovery. For this reason, doctors try to fix all of the affected muscles at once when it is possible or, if more than one surgical procedure is unavoidable, they may try to schedule operations close together. A second surgical technique, known as selective dorsal root rhizotomy, aims to reduce spasticity in the legs by reducing the amount of stimulation that reaches leg muscles via nerves. In the procedure, doctors try to locate and selectively sever some of the over-activated nerve fibers that control leg muscle tone. Although there is scientific controversy over how effective this technique actually is, recent research results suggest it can reduce spasticity in some patients, particularly those who have spastic diplegia. Ongoing research is evaluating this surgery's effectiveness. Experimental surgical techniques include chronic cerebellar stimulation and stereotaxic thalamotomy. In chronic cerebellar stimulation, electrodes are implanted on the surface of the cerebellum--the part of the brain responsible for coordinating movement--and are used to stimulate certain cerebellar nerves. While it was hoped that this technique would decrease spasticity and improve motor function, results of this invasive procedure have been mixed. Some studies have reported improvements in spasticity and function, while others have not. Stereotaxic thalamotomy involves precise cutting of parts of the thalamus, which serves as the brain’s relay station for messages from the muscles and sensory organs. This has been shown effective only for reducing hemiparetic tremors--uncontrollable shaking affecting the limbs on the spastic side of the body in those who have spastic hemiplegia. Mechanical Aids Whether they are as humble as velcro shoes, or as advanced as computerized communication devices, special machines and gadgets in the home, school, and workplace can help the child or adult with cerebral palsy overcome limitations. The computer is probably the most dramatic example of a new device that can make a difference in the lives of those with cerebral palsy. For example, a child who is unable to speak or write but can make head movements may be able to learn to control a computer using a special light pointer that attaches to a headband. Equipped with a computer and voice synthesizer, this child could communicate with others. In other cases, technology has led to new versions of old devices, such as the traditional wheelchair and its modern offspring that runs on electricity. Sources: http://www.nichcy.org/pubs/factshe/fs2txt.htm
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