In cerebral palsy, which is shortened CP, the ability to move is affected. CP is because the brain has suffered an injury sometime before the age of two, either before birth, during childbirth or later. The hassles that CP gives are still alive. Treatment and exercise can relieve the symptoms. They can also be relieved by growing and developing.
CP is an abbreviation of the Latin name cerebral palsy. Paresis means paralysis and cerebral means it depends on the brain. The fact that a child has CP, how severe it is and of what type, can sometimes not be determined until the child is up to four years.
This text is written for you who are a parent or relative of a child who has CP.
CP is often detected early in life
As a parent, you often notice that your child’s ability to move does not develop properly. For example, the child may not be able to turn around, balance his head or use his hands at the same age as other children are usually able to. Staff at the childcare center often find that something is different when they look at children.
It is usually noticed that something is different already from birth if it is about more severe CP.
A little older child
It may happen that a child has gotten older without anyone noticing that they have CP if they are born in a country where child health care is not so developed. Then you can contact the health care center or student health to get help to a doctor who can examine the child.
Different ways to divide CP
CP can be divided into different groups. The different groups are treated in different ways. It is common to have several different types of CP.
Spastic CP
Of all those with CP, most have spastic CP. Spasticity is a special kind of muscle tension as the muscles are both weaker and more tense than usual. The tension of the muscles is unbalanced, and some muscle groups pull stronger than others.
In people who do not have CP, there is a balance between the muscle groups. For example, the bending muscles and the stretch muscles in one knee balance each other so that it is possible to relax in the knee. If there is spasticity in the knee, the bending muscles or the stretch muscles take over. The knee is then involuntarily tightened and it becomes difficult to either stretch or bends the knee.
It is common for the legs to be pulled inwards so that they intersect if a child has spastic CP. Many people with spastic CP have so-called tip foot. Then the muscles in the calf are tense and have become too short so that you stand on your toes and cannot tread down your heel. Tense muscles grow poorly, and the imbalance between muscles that stretch and bend causes the joints to malformed.
Sometimes only one half of the body is affected, sometimes both. It is common with more symptoms from the legs than from the arms when both body halves are affected.
Dyskinetic CP
Dyskinetic CP involves involuntary movements throughout the body, including the mouth, tongue, and throat. The movements can sometimes be slow and sometimes slower.
The muscles’ tension varies from too low to suddenly sharply increased, called tonal shift or dystonia. Sometimes the tension increases so much that the body gets stuck in rigid distorted positions. Tone switching can make it very difficult to move.
At dyskinetic CP, some of what is called common newborn reflexes may remain throughout life. Many with dyskinetic CP, can continue to improve their mobility throughout their lives
Atactic CP
Atactic CP involves balance disorders, difficulties in coordinating their movements or shaky movements. Often you also have spasticity, ie increased muscle tension in the legs. Atactic CP is unusual.
Other divisions
Another way of dividing CP is based on what a person with CP can do at different ages. It is partly about the so-called gross motor skills, that is, being able to hold your head up, sit or walk. On the one hand, it is about the so-called fine motor, which is to be able to grab and use the hands. The division for a rough motor is called with an English abbreviation for GMFCS, and the division for fine motor for MACS.
Different forms of CP are due to different injuries
An injury that occurs early in pregnancy can cause brain tissue to not develop properly. Often it is not possible to determine what the damage is due to. The most common is that one half of the brain is damaged. This can cause the child to have spastic CP in one half of the body. If the child is injured in both hemispheres during this time, they may have a severe disability with spasticity, especially in the arms. It is unusual for injuries in both hemispheres.
The baby’s brain gets oxygen deficiency or blood clots if the placenta does not work at the end of pregnancy. The parts of the brain that affect posture and the will-driven movements can then be damaged. It can also happen if there are unexpected and serious complications at birth. This can cause the child to have dyskinetic CP. They can get atactic CP if the cerebellum is damaged.
Sometimes CP may be due to the child having oxygen deficiency at birth. Some people believe that the umbilical cord is tightened around the neck, but it is extremely rare to be the cause. It may also be because something happened during the fetal period or in the immediate time before childbirth, which makes the child weaker and more difficult to cope with being born. For example, the fetus may have an oxygen deficiency or an infection. Those who are pregnant often do not know this and cannot do anything to prevent it from happening.
After giving birth and up to two years of age, the brain can take damage from severe infections or accidents. This can lead to different types of CP, usually spastic.
Symptoms of cerebral palsy
The symptoms of cerebral palsy are different from person to person. Some have none of the inconveniences mentioned here, others have some occasional inconveniences, and some have many and severe disabilities.
The muscles are affected
Cerebral palsy can cause various kinds of impact on the ability to move. In spastic CP, which is the most common, some muscles are tense and cannot relax. In other types of CP, it is common with involuntary movements throughout the body or difficulties with balance and coordination of movements.
In addition to the muscles of the arms and legs, other muscles may also be affected, such as muscles of the mouth, abdomen or chest.
Joints and skeletons are affected
There is a risk that the hips will slip out of the joint, or the back will grow oblique, so-called scoliosis. This is due to an imbalance in the tension of the muscles. Major inconveniences can be avoided if they are detected in time so that they can be treated.
The stomach and intestines are affected
Many suffer from the stomach and intestines. This is because the muscles needed for digestion to function are affected. The problems can be, for example, acid reflux, vomiting, and constipation. Pain or discomfort in the esophagus or stomach can lead to decreased appetite.
It can be difficult to gain weight or lose weight
The increased muscle tension and involuntary movements cause the body to consume more energy. During childhood, some children with CP may, therefore, find it difficult to gain enough weight. Others may instead gain too much weight because they have too little muscle tension and therefore move too little.
Vision can be affected
Vision can be affected in different ways. It is common to have trouble with squinting. In the case of refractive errors in the eye, glasses can help.
Interpreting visual impressions can also be a problem. Then, for example, it can be difficult to read, recognize faces and to find the right path.
The visual impairment is due to the fact that the brain cannot process the visual impressions sufficiently effectively, even though the eye is actually functioning properly.
The brain is affected
Anyone with CP may also have other problems due to the brain not functioning normally. Examples of this are epilepsy, impaired vision or hearing.
Some who have CP also have an intellectual disability but most do not. Those who have it usually have a slight developmental disorder. The risk that a person with CP has a severe developmental disorder is greatest in the form of severe spastic CP which affects the arms more than the legs.
Sometimes the behavior is affected
Some people with CP also have difficulties with attention, concentration and impulse control. People with CP may also have various cognitive developmental disorders such as ADHD or diagnoses within the autism spectrum.
The speech can be developed later
Many people who have CP start talking later than others. Speech development is also affected if a person with CP also has a hearing impairment. With a severe hearing loss or severe developmental disorder, they may not be able to learn to speak at all.
The speech can become unclear if it is difficult to control the muscles of the mouth and throat. If it is very difficult to control those muscles it may be impossible to speak. This is often the case with dyskinetic CP.
It can be difficult to swallow
When it is difficult to control the tongue, mouth muscles, and neck muscles, it becomes difficult to suck, chew and swallow. Sometimes it goes well for newborns but becomes more difficult then. It is easy for children who have CP to swallow incorrectly and get food and drink down the airways. If the child coughs while eating and drinking, it is a sign that they are not swallowing properly.
Hard to breathe
In severe CP, breathing can be affected and become wheezing and wheezing. It can also form mucus that causes trouble. This is often due to the person swallowing incorrectly, allowing food and drink to enter the respiratory tract, or causing them to become inhaled and then inhaled. It can lead to the trachea and respiratory problems as in asthma.
Where can I get help?
Talk to a nurse at BVC if you have any concerns about your child’s development and mobility.
You can also contact a health care center or pediatrician. You can contact many receptions by logging in.
Investigations
Magnetic camera or computed tomography examinations show more precisely what has been damaged in the brain. Often these examinations are done when the child is two years of age. It is possible to examine newborn babies, but you can see more details when the brain is more mature. When the child is examined with a magnetic camera or computed tomography, they are given sedative medicine or light anesthetic to lie still so that the images become sharp.
When a doctor decides whether a child has CP, you as a parent may come with your child on a doctor’s visit. You get to talk to the doctor about what you have noticed, and a thorough physical examination of the baby is done. The doctor also receives information from the staff at bvc about what they have seen and noticed.
The doctor also usually asks a physiotherapist to examine the child’s movement ability. Sometimes other investigations are needed.
Image examination of the brain
Magnetic camera or computed tomography examinations show more precisely what has been damaged in the brain. Often these examinations are done when the child is two years of age. It is possible to examine newborn babies, but you can see more details when the brain is more mature. When the child is examined with a magnetic camera or computed tomography, they are given sedative medicine or light anesthetic to lie still so that the images become sharp.
The imaging examination can show exactly what has been damaged in the brain, but sometimes you can not see any damage at all.
It is not possible to predict the child’s development safely, although it is possible to see image damage. Surveys of the brain only show what it looks like, not exactly how the brain works.
Blood and urine tests
Blood tests and urine tests may be needed to look for the cause of the child having CP. The tests may also be needed to investigate if the child’s complaints are due to something other than CP.
It takes time before you can find out
In the case of children younger than one year, it can be very difficult for the doctor to be sure if the child has CP or any other neurological disease. It may also be that the child has no injury or illness at all. Therefore, you and your child must make several visits so that the doctor can follow the child’s development.
Other studies at CP
Once it is established that a child has CP, several other investigations and investigations are often done, since CP often involves other problems than the difficulty of the movement itself. For example, sight and hearing are always examined.
Treatment for cerebral palsy
There is no treatment for cerebral palsy, but it is possible to prevent and reduce the difficulties that the disability brings so that they do not become an obstacle in everyday life. This is called habilitation .
Since it is so different what hassles you can get from CP, there is also a big difference in what treatments you may need. It can be, for example, exercise training, different aids for sitting or moving, treatment with medicines for muscle tension or help with communication. The most common treatments are to strengthen and increase mobility.
Medical treatment of muscle tension
There are various ways to treat increased muscle tension. Either with tablets or with injections. One treatment option is to give or multiple syringes of the substance botulinum toxin. The substance blocks the transmission of nerve impulses to a muscle so that it relaxes. During the time the subject seems to work, the child should exercise more intensively so that the muscles that are otherwise difficult to exercise can become stronger.
The most commonly used tablet treatment is medicines containing the substance baclofen, which reduces muscle tension if the muscles in both arms and legs are tense. You can also use other medicines that have muscle relaxant effects.
A child with CP can also have the hindlimb injected directly into the spinal cord through a thin tube if they have severe muscle tension. The medicine comes from a small pump that, together with the tube, is operated under the skin, so that they can live as usual and, for example, swim without problems. The pump is programmed to provide the correct dose of medicine. Replenishment of medication in the pump is done at the hospital a few times each year. It is filled with a syringe. The visits also check if the medication dose needs to be changed and if so, the pump is reprogrammed.
Side effects of drugs
All muscle relaxants that the child is given in tablet form can cause side effects, such as fatigue, decreased muscle strength and poorer concentration. The doctor may need to try the right dose so that the child gets a good effect from the drug but as little side effects as possible.
The effect of the hindlimb decreases with time and the dose may, therefore, need to be increased. It is uncommon, but if something goes wrong with the baclofen pump or hose, the baby can get a fever and severe muscle tension. Then they should immediately seek care.
Treatment for joints and skeletons
Children with CP may go on annual checks with a physical therapist and occupational therapist. In this way, defects in the skeleton and joints and other complications are prevented or detected so early that they can be treated.
Together with specialist doctors, the team in habilitation can assess what treatment may be needed.
Supportive dressings
As a treatment, you can get supportive dressings, so-called orthoses. For example, they keep the foot in the correct position. They usually consist of a plastic rail, which is fastened with Velcro straps.
There are several different types of orthoses, and the kind to be used depends on what is the goal of the treatment. Sometimes you have an orthosis only at night so as not to get excited, sometimes it is necessary to get a better position when standing or walking. The child may try out an orthosis in consultation with a physiotherapist, orthopedist, and responsible physician.
Physiotherapy and occupational therapy
Physiotherapists and occupational therapy are primarily about being as mobile and active as possible on the basis of their own conditions, and being able to participate in what you want in life. Treatment should be preventive and provide knowledge, desire, and motivation to keep the body in shape during adulthood and as an adult.
The treatment includes training in coping with various everyday tasks, such as dressing up and eating. Physical therapy includes strength training. Young children also exercise through play. For example, teens and adult strength trainers at the gym.
Occupational therapists help try out tools that may be needed and adapt the environment in the home, preschool or school to make it more accessible. For example, it may be about removing thresholds or making the bathroom easier to use. They also work with special training programs for the function of the hand and fingers.
Physiotherapists and occupational therapists collaborate with other occupational categories on orthoses, assistive devices, stress-reducing treatment, and surgeries.
Help eat
It may happen that a child who has CP has difficulty gaining weight, or is gaining too much weight. Then it may be good to meet a dietician to get support and advice on how to get the right amount of nutrition. The brain needs nourishment to develop as well as possible, and it is extra important if you have an early brain injury.
Hunger often leads to increased muscle tension. Muscle tension also increases if you do not get enough nutrition, become constipated, have pain, have difficulty breathing or are worried. The muscle tension, in turn, causes you to get more pain, consume more energy and become more constipated.
Feeling safe, not being malnourished, constipated or in pain, is the most important factor in reducing muscle tension as much as possible.
Difficulty swallowing
It can be difficult to swallow food and drink properly if the muscles in the mouth and throat are not working properly. The ability to swallow is usually investigated if a child with CP has difficulty speaking or cannot speak at all and also has difficulty breathing. A speech therapist can then examine the child by video footage of how the child eats.
Different types of help may be needed if the child has difficulty chewing or swallowing. Several things need to be adapted, such as the sitting posture and the texture of the food. Drinks usually need to be made thicker. It should not take too long and too much power to eat and drink.
Button on the stomach
Sometimes it can be a lot of problems from the stomach or with swallowing food. Then the baby may need to get the nutrition directly into the stomach through a small tube that is operated on. It is often called because they have a “belly button”. The child may need it even if they manage to eat some with their mouth without swallowing wrong. If the child cannot eat at all with the mouth, there are aids that they can have in the mouth to feel the taste during feeding.
Medicines for digestion
There are medicines that help against acid reflux, vomiting, constipation or to make the bowels work better. If a child is often vomited or is getting vomiting, they may have difficulty breathing and need surgery.
Communication Training
Communication begins with the early interaction between the child and the parent. Some children with CP may have difficulty interacting, such as eye contact. It often helps to get help from a psychologist, speech therapist or specialist educator.
Later, the child may need to continue with communication training with a speech therapist. Some children need to practice speaking, while others need to practice communication with hand signs, symbols or pictures. The way in which the child uses depends on the need they have. The child can also use different ways of communicating at different ages.
Assistance in daily life
A child who has CP may have personal assistants, treatment assistants or additional resource persons in the school and preschool. You go through what kind of assistance they may need together with practitioners in habilitation. There is also the opportunity for families to get relief during weekends. The curator of the habilitation can provide contacts with the municipality and the insurance fund so that the child receives the assistance they are entitled to.
Aid
There are many different types of tools for reducing disabilities. For moving, for example, there are wheelchairs, both electric and those that are rolled by hand. Other examples of aids are special chairs, cutlery to eat with, aids to care for hygiene and computers with different functions. The needs change over time as the occupational therapists in habilitation help to try out what tools are needed at the moment. The aids can be borrowed from special aid centers.
Alternative treatment methods
There is no scientific evidence that alternative treatment methods work.
It is important that you as a parent discuss with therapists within the habilitation process if you read about different treatment methods and want to try them out.
habilitation
When a medical examination has shown that a child has CP, both children and parents receive support from the habilitation. Habilitation is found in all county councils and regions, and every child has a habilitation team that can consist of, for example, a physical therapist, occupational therapist, speech therapist, special educator, and curator. A doctor is also always associated with the team. Together with the parents, the team works around the child to reduce disability in everyday life.
The child receives treatment and training from the team, and the whole family receives support and advice. Through the habilitation, the child can also try out aids that may be needed.
The body must be used to develop, which is why training is an important part of the treatment. When it comes to young children, it is usually designed as a play. It is usually the parents and staff of the child’s preschool or school who treat and train the child, with the support of the habilitation.
To be notified that a child has CP
Many parents understand that their children’s ability to move does not develop like that of other children, but being told that the child has CP can still be difficult.
Support for you as a parent
As a parent, you may need a lot of support when you learn that your child has CP. The doctor and other staff in the so-called habilitation will ensure that you receive all the help and support you need. It can be both practical things and if you want to talk to a psychologist, for example.
The first time after the message can be overwhelming, and it is common to have many questions.
Since a child who has CP needs more support and stimulation than other children to develop, you as a parent need to be more involved. The demands on the parents and the rest of the family become even greater if the child also has a lot of stomach problems, eats and grows poorly, or has sleep problems.
Get help on their own terms
Each family manages the problems in their own way and should receive the help of the habilitation and child care that they need. For some, it may be good to apply for personal assistance early, and for others, it may be better to wait.
Sometimes it can take several years before you as a parent have really taken care of everything that happens. It is easy to focus so much on all investigations and treatments that you forget or do not have time to be a parent. It happens that parents feel that their lives consist of making sure that all times are met and all treatments are performed.
Even if you have to adapt life to the child’s needs, do not forget your own needs. It is good to take the opportunity to get relief so that you as a parent can rest and get some rest. Other parts of life, such as the child’s siblings and your work, must also be accommodated.
Relief also gives your child the opportunity to make friends and experiences outside the family. It becomes more important the older the child becomes.
Living with CP
Small children who have CP usually go to the usual preschool, with an extra resource person in the staff. Then the child continues in the regular elementary school or sometimes in the special school. They can receive special support to make it work in school if needed.
In some places, there are special preschools and schools for children with disabilities. There are various therapist employees. There are national gymnasiums for disabled young people from all over the country in Gothenburg, Kristianstad, Stockholm, and Umeå. They have adapted to teaching, habilitation, and student housing.
Talk to your child
When your child is wondering about their disability, it is important that they receive information in a way that suits the level of development they are at. It can also be good to get information from someone other than the parents, preferably from someone on habilitation.
Being a teenager and having CP
For many young people, adolescence is difficult. Teenagers should find their own ways and become independent. It is no different because you have CP. You are just as curious as to others about trying different things in life.
Being a teenager and having CP can mean that it takes longer to move than for others. You can talk unclear or not talk at all. You may need an extra school year because so many practical things take longer and you can’t cope with school at the same pace as others. The more difficult the disability you have, the more limitations there are in daily life.
It can be difficult to become as independent as you want if you have difficulty moving or are dependent on assistance.
But it may sometimes be easier to trust an assistant instead of his mother or father. The Internet also allows you to make contacts on your own, even if you have limited mobility.
Having CP as an adult
When the person who has CP is 18 years of age, the doctor at the child rehabilitation usually writes a referral to the health center and describes the CP injury. Then the health center will know if you need special help during the visits, such as a lift or someone who helps to interpret what you want to say.
How life becomes as an adult is very different for different people because CP is so varied. There is everything from those who are fully employed and who do not have such major limitations in their everyday lives, to those who have multiple disabilities and need to live in a special place where they can get assistance with everything. The municipality is responsible for the support and treatment you need if you live in special accommodation.
Some may need personal assistants and travel services to travel to and from work. Good functioning service is necessary to be able to be active and involved in society. The Employment Service has a special service for people with disabilities.
Aid in the form of aids is organized in different ways around the country. In most county councils there is adult rehabilitation with staff who have different professions, but often not doctors.
For the most part, the one who is an adult and has CP no longer has regular check-ups like when they were children, but you have to consult yourself and book a time if you have any problems.
When you become an adult, you may experience more trouble, such as more pain, less energy and more difficult to walk. This is especially true if you have walking aids, such as crutches or a walker. Many suffer from the shoulders due to the load. Using a wheelchair for longer movements and using shorter distances is a way to protect your shoulders.
What does CP depend on?
CP can depend on many things. Sometimes it is difficult to know for sure the cause, more than it is that an injury has occurred in the brain before it is fully developed.
When the brain develops, up to about two years of age, it is called immature. The parts of the immature brain are variously sensitive to influence during different periods of development. This means that an injury can have different consequences depending on when it occurs and how large it is.
The next pregnancy is followed closely
You are usually followed extra carefully when you become pregnant next time if you have once given birth to a child who has CP. This is to prevent complications during pregnancy or childbirth. You should have the opportunity to do your checks at a specialist maternity care center.
CP is not hereditary
Most forms of CP are not hereditary. Exceptions are above all atactic CP, which can at times be hereditary.
How common is CP?
The number of children with CP has been the same for many years, about two per 1000 children. Childbirth care and the care of newborns have improved, and fewer children born a little prematurely or after a difficult birth receive CP. Those who still receive CP have less functional disabilities than before.
The fact that care has gotten better also means that many more of the very premature children and full-term children with severe brain injury survivors, and for those children, there is an increased risk of getting CP.