What to Expect with a Diagnosis of Cerebral Palsy
Learning that your child has cerebral palsy (CP) can be very distressing. If this happens to your child, know that you are not alone. According to the Centers for Disease Control and Prevention (CDC), each year, an average of 1 in 345 children in the United States are diagnosed with cerebral palsy. While your child cannot “outgrow” the symptoms of CP, children with cerebral palsy can still lead full lives. The first step to reaching this potential is understanding what a cerebral palsy diagnosis means for your child’s health and future.
What is Cerebral Palsy?
CP is not a disease. It is a group of disorders that affects a person’s ability to move and maintain balance and posture. Cerebral palsy is the most common motor disability in childhood. According to the CDC, cerebral palsy may be caused by abnormal brain development or some form of brain damage to the developing brain. CP is more common among boys than girls. It is also more common in Black children than in White children. Developmental issues related to cerebral palsy often first begin to appear between 18 months and two years old. An estimated 800,000 children and adults have at least one cerebral palsy symptom.
What are the early signs and symptoms of CP?
A doctor and a child’s parents are called a child’s care team. Their observations and communication will help them to identify potential signs and symptoms of cerebral palsy early. The early signs and symptoms of cerebral palsy can vary. Children reach most of their motor development milestones early in life. Most symptoms of CP may appear during infancy or preschool age. In severe cases, a child may present signs of cerebral palsy at birth. Parents are usually the first to notice issues. Their child may demonstrate slow motor development, tight or floppy muscle tone, or other signs that cause them to worry about their child’s health.
A doctor may first suspect a problem if a child fails to reach key developmental milestones. Some of the markers doctors watch for at a well-baby check-up include steady increases in muscle tone, motor skills, or speech patterns. They may also watch for issues related to posture, coordination, and hearing or vision.
Signs and symptoms of CP
Movement and coordination problems associated with cerebral palsy include:
- Variations in muscle tone, such as being either too stiff or too floppy
- Stiff muscles and exaggerated reflexes (spasticity)
- Stiff muscles with normal reflexes (rigidity)
- Lack of balance and muscle coordination (ataxia)
- Tremors or involuntary movements
- Slow, writhing movements
- Delays in reaching motor skills milestones, such as pushing up on arms, sitting up, or crawling
- Favoring one side of the body, such as reaching with one hand or dragging a leg while crawling
- Difficulty walking, such as walking on toes, a crouched gait, a scissors-like gait with knees crossing, a wide gait, or an asymmetrical gait
- Excessive drooling or problems with swallowing
- Difficulty with sucking or eating
- Delays in speech development or difficulty speaking
- Learning difficulties
- Difficulty with fine motor skills, such as buttoning clothes or picking up utensils
What other conditions are associated with CP?
In addition to the main symptoms, people with CP may have related conditions, including intellectual and developmental disability (IDD), seizures, delayed growth, abnormally shaped spine, vision problems, hearing loss, infections, and long-term illnesses, malnutrition, dental problems.
Intellectual and Developmental disability (IDD)
Up to one-half of people with cerebral palsy have intellectual and developmental disabilities. An IDD diagnosis requires ongoing attention from parents and doctors. Additional tests may need to be performed to diagnose IDD. Early intervention can help a person with cerebral palsy and IDD to live with the symptoms related to CP with IDD.
About half of all children with cerebral palsy have one or more seizures during their lifetime. Seizures can range from small to severe. A child prone to seizures is at high risk for further brain damage and other injuries. Brain-imaging tests such as an EEG can determine if a child has had a seizure.
Children with moderate to severe cerebral palsy are often very small for their age. This delayed growth may be one of the first symptoms parents notice before a cerebral palsy diagnosis. If your child is diagnosed with CP, parents will need to be patient with themselves and their child since their child’s development may fall behind other children in their age group.
The spine may curve in a way that makes sitting, standing, or walking more difficult for a child with cerebral palsy. In addition to the pain commonly associated with CP, an abnormally shaped spine can increase a child’s pain level. It is crucial to have good communication and pain management measures in place. Following medical advice is key to improving your child’s quality of life.
Vision problems may include problems focusing on objects, blurred vision, field vision loss, rapid eye movement, or trouble recognizing familiar faces. Poor eyesight may cause learning delays or frustration for your child. If you notice problems with your child’s vision, talk to your doctor. They may be able to help improve your child’s vision.
This form of hearing loss is incurable. It is often related to the nerve in the inner-ear. A child with hearing loss may struggle in social or academic settings. Working closely with their doctors and teachers will help a child avoid falling behind in school. What may appear to be IDD could actually be hearing or vision issues. That is why partnering with a child’s doctor and performing the necessary tests is so important.
Infections and Long-Term Illnesses
Many people with cerebral palsy have a higher risk of heart and lung disease and pneumonia (infection of the lungs). A parent who has a child with CP will need to be vigilant to the signs of heart and lung disease. They will also need to be wary of exposing their child to anyone who may be sick. A small germ for most people could be detrimental to a person with CP.
Because people with CP can have trouble swallowing, sucking, or feeding, it can be hard to get the proper nutrition or eat enough to gain or maintain weight. To avoid this issue, it is vital that the care team (parents and doctors) work closely together to meet a child’s nutritional needs.
Some people with cerebral palsy may have movement problems that prevent them from taking care of their teeth. Poor dental care can lead to other health issues, including damage to the heart. Regular dental cleaning and tooth maintenance can help protect a child with CP.
Is diagnosing CP easy to do?
Unfortunately, no. Diagnosing cerebral palsy is a complicated process because it cannot be done with a single test. An accurate diagnosis of cerebral palsy requires both the parents’ observations and a doctor’s evaluation and tests. This method of diagnosis is often a long process. In some cases, it can take years to determine that a person has cerebral palsy. Since a single method does not exist, parents and doctors must closely watch a child’s development before making a diagnosis.
Doctors are not quick to diagnose cerebral palsy. A child’s doctor will perform a series of tests and look at a child’s medical history to rule out other conditions, such as neurological disorders. Once a doctor suspects cerebral palsy, they may order one or more brain imaging tests to look for brain damage. The tests that may be used are:
- Ultrasound – This method is used most commonly in high-risk preterm infants to take pictures of the brain. Ultrasound is not as good as other methods of taking images of the brain, but it is the safest way to look at preterm infants’ brains.
- Computed tomography (CT scan) – CT scans use x-rays to take pictures of the brain and show damaged areas.
- Magnetic resonance imaging (MRI) – MRI uses a computer, a magnetic field, and radio waves to create an image of the brain. It can show the location and type of damage in better detail than a CT scan.
- Electroencephalogram (EEG) – If a person with CP has had seizures, a health care provider may order this test to rule out another disorder such as epilepsy. Small disks called electrodes are placed on the scalp to measure the brain’s activity.
Once your child is diagnosed with cerebral palsy, what will life be like for them?
When a person is diagnosed with cerebral palsy, a great many things will change. First, be assured that you, as a parent did nothing wrong. In most cases, cerebral palsy cannot be prevented. It is caused by preterm births and other situations that are out of a parent’s control.
Cerebral palsy cannot be cured. Throughout their life, a person with cerebral palsy will deal with many of the symptoms and complications caused by CP. In addition to the physical limitation, a person with CP may experience depression, anxiety, or delayed social development.
Parents and children must have the right support around them as they face the daily requirements of living with such a complex disability. Support groups for families and ongoing medical advice are just two things parents will need as they adapt to their child’s new life.
Living with CP will never be easy, but you are not alone. There are many resources available to support you. Talk to your doctor about what tools and programs may be the best fit for your family. Here are some other timely articles you may find helpful: