copyright Cheryl K. Hosken 2008
Camille Durfee is awake when her parents come to her room at 7 A.M. Her father lifts her into her wheelchair and they go the the kitchen for breakfast. After breakfast, her father lifts her onto a portable toilet near her bed. This toilet has straps to secure her body to the toilet. She has privacy to use the toilet alone for a few minutes. Then her mother comes into clean and dress Camille. Together, they choose her clothes for the day.
After dressing, a wheelchair accessible bus comes to her home to take her to school. Camille does not talk and uses a computerized device to communicate. The device is called a "Liberator". The computerized box is placed at her eye level on a tubular mounting device. It has numbers, letters, and phrases printed on a grid. She activates the Liberator by using a light attached to her head. She points the light to the number, letter, or phrase that she wants to use. Then the Liberator says what she has chosen.
At school, a teacher's assistant records Camille's answers in a test booklet and helps her compose short reports. The assistant also helps her eat lunch. At the end of the school day, a college student meets the bus and helps Camille into the house. They do homework assignments and program a short verbal report into the Liberator to present in class the next day. Camille's parents come home from work and prepare dinner. She eats dinner and watches television for awhile.
Afterward, Camille is transferred to a rolling, reclining, plastic wheelchair with a mesh seat. Her mother rolls her into the shower - a space where the bathtub once was located. Using a hand-held showerhead, she gives her daughter a bath.
By 9:30 P.M., Camille is in bed. She has a small radio near her bed and listens to it as she falls asleep. During the night, her parents wake three or four times and check to see that Camille is comfortable. Sometimes, she may have caught her arm under her body or she just needs to change position. (Taken from the textbook "Exceptional Lives" by Turnbull, Shank, and Leal, 1995)
Meditate Word By Word On These Verses:
What is Cerebral Palsy?
Cerebral refers to brain injury. This injury does not damage the child's muscles or the nerves connecting them to the spinal cord. It does affect the brain's ability to control the muscles of the body. Palsy - the lack of muscle control that affects the ability to move and maintain balance and posture. (definition from United Cerebral Palsy Associations, 1977)
Cerebral palsy is distinguished by two characteristics: 1) the brain damage is non-progressive and non-hereditary, 2) it occurs before the brain is fully mature - before the age of 12. The damage to the brain usually happens during the perinatal, pre- or postnatal period. It always results in dysfunction of the motor system of the body and there may be other large deficits. We know that there are congenital causes for cerebral palsy. These include infections in the mother before birth, exposure to environmental toxins, problems with the placenta, multiple births, malformations of the brain, and poor prenatal care.
Question 1: A young child who is brain injured in a car accident can be diagnosed with cerebral palsy.
true / false.
At the time of birth, there are acquired causes. These are prematurity with bleeding into the brain, birth asphyxia, neonatal infections, and hyperbilirubemia. The last cause is now uncommon since there are transfusions available for children with hyperbilirubemia.
In 20-30% of cases there is no known cause. 60-70% of premature births where the child weighs 500-750 grams have cerebral palsy. Usual statistics are that 5.5 children out of every 1000 who are born have C.P. With the use of brain scans it is now possible to grade the amount of bleeding into the brain and estimate the amount of damage done to the child.
The severity of a person's cerebral palsy depends on the type and timing of the injury. With premature babies, bleeding in the brain can cause extensive damage. Camille, however, experienced a normal birth and seemed physically sound. When she reached the age of one year and had not developed normally, a brain scan showed that she had a cyst in her brain. The brain damage left her without the capacity to speak or move any part of her body except her head. Little damage was done to the part of the brain that affected her intelligence.
Question 2: What two factors are considered when diagnosing cerebral palsy?
When doctors work with this type of disability, they may find the following features:
While every child may not have all of these features, the above list gives the doctor guidelines in diagnosing C.P.
There are two ways to classify C.P. The first is according to the extremities affected. They are:
The second classification is according to muscle tone or brain part affected. They are:
Question 3: What are the two ways used to classify types of cerebral palsy?
SPASTIC FORMS OF C.P.
Forms of spastic cerebral palsy have been studied. With these studies certain characteristics of the disability have been noted. There are three types:
Question 4: What type of cerebral palsy does Camille have?
Although there is no cure for cerebral palsy, ongoing management is critical for a child to reach maximum functional, social, and emotional well being. Every child's treatment should be individualized and may include some or all of the following:
Nutritional Services for Children with CP
Normal swallowing includes the:
Newborn children have the ability to swallow without difficulty. At age 4-6 months negative suction begins, this means the child is able to use sucking for drinking. By 7-9 months, he begins eating soft food with his fingers. At 10-12 months, he is able to control his jaw to bite food and his tongue can move laterally to bring food to the side of the mouth for chewing. By 12-15 months, he can drink from a cup. At 15-18 months, he can chew with his mouth closed. By 24-30 months, he is able to chew meat.
If the child is having problems with swallowing, he will have chronic congestion of the lungs, recurrent pneumonias, and unexplained asthma. His feeding history will show he coughs after eating, has a poor oral fluid intake, and an unusual head position for eating. His head maybe tilted backward. He drools excessively because he has little control of his tongue and swallowing. He is underweight and no cause is found for his small size. His voice sounds like he is talking and swallowing something at the same time.
To help the child, find out the following information:
Signs of problems with infants are:
Question 5: Why is it important to evaluate a child with CP for nutrition?
Camille's grandfather talks about her. He says that Camille is his favorite. His son-in-law found Camille in an institution for children who are profoundly retarded. She was there because there was no other place for her to go. Camille could only smile and move her eyes. She was given many tests and found to have a better than normal intelligence. She had difficulty swallowing due to a poor gag reflex. Fluids were poured down the back of her throat. She was mute and too paralyzed to sign.
The entire Durfee family set out to make the most of her abilities and to increase her knowledge of the world around her. She had never been in a family situation or seen normal children. She got new clothes, lots of loving attention, and conversation. She learned to communicate "yes" and "no" by the movements of her eyes. She was allowed to touch objects and learned the adjectives of rough/smooth, wet/dry, hot/cold, and heavy/light. She tasted various vegetables and fruits. She rode in a buggy and car. She learned that everything had a name. She caught up the experiences other children her age had.
Her grandfather designed a communication board for her with symbols that her family pointed out when they asked her what she wanted. Then her grandfather found the Liberator communicator. This device is helping her to attend high school. She has all the body chemistry, desires, and reactions of other teenagers. She is a person. She has learned to operate her own electric wheelchair.
The future for Camille is unknown. She wants to help other disabled people. She is writing a small series of stories she hopes to publish.
To help the baby with C.P. eat better, swaddle him so that his arms and legs are still. Position his head slightly downward as you hold him. Keep yourself free from distraction. Remove the nipple every 3-5 minutes to let the baby breathe more easily. For children, signs of problems are:
As he grows older, to help this child eat, it is best if he is seated upright, knees bent, feet flat on the floor, and shoulders slightly inward. Thicken liquids with kisel or cereal so they are the consistency of syrup or honey. Grind the meat and add sauces to it. Introduce food on the bottom lip, this alerts the tongue to receive food. Alternate food and liquids so that liquids bring the more solid food to the stomach. Use a cup with a handle and a cover to control the amount of liquid the child gets. Help the child to sit up for 20 minutes after eating.
The amount of calories these children eat need to be increased by 20-25% because of the spastic movements use much energy. Try to increase the caloric density of the foods by feeding them puddings, potato flakes, and yogurts.
These children may have below normal calories, which produces low weight and height. There may be iron and mineral deficiencies so that the child looks pale, fatigues easily, and his thought processes are slowed.
Sometimes the esophagus muscle does not close well and there is reflux of stomach contents into the throat. Sometimes medications can affect the muscle so there is more control. The child may complain of burning in his throat and he doesn't want to drink because he will have burning.
Constipation happens often because the CP child does not drink sufficient fluids. Then they have decreased appetite and a feeling of fullness in the bowel. Abdominal massage can help and hands should move in the direction of the large intestine - from his right side to the left side. For toileting, the child should have a good sitting position and his feet placed flat on a support.
There is a surgical procedure to correct excessive drooling. One procedure is to remove the salivary glands near the throat. The other procedure is to cut the nerve that causes the over stimulation of the salivary glands. At this time one procedure is not recommended over the other. These types of surgery is especially important for the child who attends school within his neighborhood.
Question 6: The best way to feed a child with CP is:
(Only one of the following answers is correct.)
Scold him and then give him something to eat.
Have him sit with his feet on the floor, his body straight, and put food on his lips.
Bend his head back and put spoons of food in this mouth.
Physical therapy consists of activities and education to improve flexibility, strength, mobility, and function. A physical therapist also designs, modifies, and orders adaptive equipment. Physical therapy may be carried out in clinics, hospitals, and schools -- and through a home exercise program. Physical therapy will not be successful without an ongoing daily home program. It is important that the parents understand what needs to be done and how to do it. 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.
A physical therapy program may consist of one or more of the following:
Stretching: Stretching of muscles is done by moving the arms or legs in a way that produces a slow, steady pull on the muscles to keep them loose. Children with cerebral palsy have increased tone and tend to get very tight muscles. Therefore it is extremely important to perform daily stretches to keep arms and legs limber so the child can continue to move and function. See the handout on range of motion exercises. Strengthening: Strengthening exercises work specific muscle groups to enable them to support the body better and increase function.
Positioning: The body is placed in a specific position to attain long stretches. Some positions help to minimize unwanted tone. Positioning can be done in a variety of ways, including: bracing, pillows that separate the legs or an arm from the body, knee immobilizers, wheelchair inserts, sitting recommendations, and handling techniques.
Contracture is one of the most common and serious complications of cerebral palsy. Normally, a child whose bones are growing stretches the body's muscles and tendons through running and walking and other daily activities. This ensures that muscles will grow at the same rate. But in children with cerebral palsy, spasticity prevents this stretching and, as a result, muscles do not grow fast enough to keep up with lengthening bones. The resulting contracture can disrupt balance and start the loss of previous 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.
A third goal of some physical therapy programs is improving 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.
Question 7: What causes extremity contractures in CP?
(Only one of the following answers is correct.)
Long bones and short muscles.
Lack of exercise.
Bracing, Medications, and Surgery
Because of the spasticity of the muscles in cerebral palsy, medical researchers and physicians have tried to overcome this problem. Children with CP may not be able to walk, talk, or become independent. The goal for most children with CP is to make them as independent as possible.
Doctors sometimes put a brace or a cast on a child to improve the range of motion of a joint and help the arm or leg have a more normal position. Often these devices are put on the child at night so that he is not confined by them during the day. These devices are also used after surgery to help the muscles lengthen.
Certain medications help to block the spasticity of the muscles and are given by direct injection in to the affected muscles especially those of the legs. Phenol is one of the drugs of choice. The effect of this medication on the muscles lasts for 9-12 months. It is a recommended drug because of its safety for the body. The disadvantage of the drug is that it may require general anesthesia to inject the drug. The doctor doing this procedure must be technically coorect. Sometimes there is numbness in the affected extremity after the drug is injected. Another drug used to help children with spastic muscles is botulism toxin. This toxin helps to relax the muscles and is injected directly into the large part of the muscle. The effect of the toxin lasts for 6-8 months. During the time that these substances are in the body, the child can walk easier and other types of treatment can be done. For example, a cast can then be put on a leg or arm to stretch the muscles.
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 abnormal gait. Also, 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.
Question 8: What are the ways that spasticity can be decreased?
(One or more of the following answers may be correct.)
Injections of medications.
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 over-activated nerves controlling leg muscles. Although there is scientific controversy over how selective this technique actually is, recent research results suggest it can reduce spasticity in some patients, particularly those who have spastic diplegia.
Developmental and Social Growth
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.
One of these programs is called Sensory Integration. It helps those children explore the environment they live in. It is difficult for the child who cannot understand the information that he receives from what he hears. Perhaps the child with CP has a difficult time understanding what happens when he touches something, moves in a particular way, or falls because of gravity. To correctly integrate sensations, a child needs to take in the information from all the senses, choose which information to pay attention to, make logical conclusions from the information, and choose an appropriate response. He also needs to interact with his environment. If he has no opportunity to touch, move about, and communicate with others, his thinking abilities are very limited and the connections between neurons limited. This lack of interaction makes his world very small and he is developmentally slow.
There are three types of information that a child receives:
If the child has sensory difficulties, he has trouble choosing what information deserves his attention. He needs to organize the information he has to make sense and then make a response. Children get frustrated, angry, and demanding so they can have some sort of control over their environment. This therapy tries to alter the brain's organization in such a way to improve the child's response to stimuli.
Signs of sensory integration problems are:
There are calming techniques that help a child to relax. These include giving him physical warmth - perhaps warm water, warm blanket, or warm light. Use of calming music, moving his hands or body according to music helps him. Do the activities slowly and rhythmically.
Alerting techniques that make the child pay attention include cold, rough textures, loud commands, light touch, and change of directions.
Question 9: What is sensory integration?
(Only one of the following answers is correct.)
A way of thinking.
Touching various objects.
Using all the senses to help understand environment.
To help the child learn understand balance in space, do the following activities:
To increase proprioception, do the following:
To help him understand touch, do the following
As the child with cerebral palsy approaches school age, the emphasis of therapy shifts away from 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.
Question 10: Why is it important for a child to be socially prepared for school?
In order for the baby or young child to experience the stimulation he needs to increase the interaction of neurons in his brain and thus increase his awareness of his environment, he needs to be in the environment. This means the use of special chairs, wheelchairs, and standers that provide him with support so that he can look around, do something with his hands or the rest of his body, and see others. For example, a corner shaped floor sitter is made of wood. The child sits in this padded corner seat that supports him and his hands are free to hold a book, toy, or pencil. His feet are out straight to decrease the spasticity of his legs. He is able to have two types of therapy from this device - physical therapy for his legs and sensory therapy for his mind.
A stander helps the child to stand in an upright position and feel the weight of gravity on his body. The child's feet, knees, stomach and chest are supported to help him stand. There are also prone standers that help a child to stand, but if he has a severe lack of control, his body leans forward in this stander. By attaching a table to this stander, the child can see and manipulate objects.
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. The child with cerebral palsy requires a team of professionals to help him reach his optimal functioning. Hopefully, they can all work together to talk about goals for the child and how to reach them. The earlier therapy begins, the better because the child needs to interact with his world and grow to understand himself and those people around him.
Sources for this lecture:
Firefly Children's Network - Washington, D.C.
Rifton Equipment - Moscow, 154-51-73 (Rehab and Medical Equipment)
Ботокс - +7 (495) 954-6107, www.botox.ru
Russian Medical Journal - www.rmj.ru