Cerebral palsy (CP) is the most common mobility or motor-related disability in children. A neurological condition, CP affects motor and developmental skills, including how individuals move and balance and how they hold objects and eat. In some cases, CP affects a person’s speech and vision. How CP presents in children depends on which part of their brain is impacted.
In this article, we spoke with Dr. Lekha Rao, an associate professor of pediatric neurology at UCLA’s David Geffen School of Medicine and Dr. Andrew Collins, a pediatric rehabilitation medicine physician at Stanford Medicine Children’s Health, to gain insight into what cerebral palsy is and the best ways to help individuals with CP thrive. We also spoke with Registered Nurse Lelah Coppedge, whose son has CP and is now in high school.
Cerebral palsy is a motor disability that affects a person’s ability to control their muscles. Approximately 1 in 345 kids are diagnosed with CP, according to the latest estimates from the CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network. The CDC says CP is more common in boys than in girls, but the research indicating the reason why is unclear. Approximately 1 million people currently live with CP in the United States, with at least 17 million cases reported worldwide.
Cerebral palsy is caused by an abnormal brain development or damage before, during, or after a baby is born. The CDC reports that 85% to 90% of CP cases are congenital, although the cause is unknown in some cases. NINDS points out that there are some risk factors that can cause abnormal brain development. These include:
Dr. Lekha Rao states that CP can be a “confusing term for people.” She says people tend to associate it with cognitive impairment as well. “But cerebral palsy is really just a term for an impairment of motor development,” she explains. “So this is where there's some sort of injury to the parts of the brain that help with motor, movement, coordination, and planning.”
Dr. Andrew Collins states that CP “primarily has to do with issues related to muscles and how those relate to neurologic functioning.”
Understanding the type of cerebral palsy your child may have can help you determine the type of services they need. The four main types of CP are:
According to NINDS, spastic cerebral palsy is characterized by hypertonia, also known as high muscle tone or, more commonly, as stiff muscles. Hypertonia can show up in the legs, arms, or one whole side of the body. The most recent CDC data estimates that 80% of children with CP have spastic CP. Within this realm of CP, the child might have spastic diplegia, spastic hemiplegia, or spastic quadriplegia, which describes the part of the body affected and the severity.
People with spastic diplegia experience stiffness in their legs. Tight hip and leg muscles make it hard to walk. People with spastic hemiplegia have stiffness in one full side of the body, and it affects the arms more than the legs. The most impacted form of spastic CP is spastic quadriplegia, which affects the limbs, trunk, and face.
People with dyskinetic cerebral palsy have limited control over their movements with their hands, arms, feet, and legs, making it hard for them to sit and walk. Three types of movement challenges that people with dyskinetic CP can have include dystonia (painful twisting and repeating movements), athetosis (slow, writhing movements), and chorea (abrupt, unpredictable movements). For some individuals with CP, the tongue and face may be impacted, which can result in challenges with speech and eating. Their muscles can change from tight to loose daily.
People with ataxic cerebral palsy may appear shaky and have balance, coordination, and depth perception issues. They may appear to walk unsteadily and have difficulty controlling their movements when trying to grab an object. Ataxic CP affects their upper and lower extremities, eyes, and speech.
People with mixed cerebral palsy have symptoms from multiple types of CP. The most common combination for people with mixed CP is spastic and dyskinetic CP.
In addition to the four main types of CP, there is a rare type called hypotonic cerebral palsy, indicated by low muscle tone where the muscles are overly loose; some children with it might feel floppy.
Most people with CP will experience some but not all of these symptoms. Dr. Rao provides a general idea of what the range of symptoms might look like in an individual with CP: “Some people [with mild symptoms] might just have a slight inclination to walk on their toes. That's really all that you could see. Maybe they wear a little bit of a lift in their heels to help support that. [With moderate symptoms], it could also range to using a wheelchair, unable to walk. [For some people with significant symptoms], cognitive functioning and ability to independently perform tasks of daily living may be affected.”
Some common signs and physical symptoms of CP include:
Developmental delays and abnormal posture and muscle tone are early signs that a child might have CP. As mentioned earlier, differences in muscle tone can present as hypertonia (tight muscles resulting from high tone) or hypotonia (loose or floppy-seeming muscles resulting from low tone). If a baby feels floppier (like a rag doll) or stiffer than expected, it is usually an early indicator to healthcare providers that a baby may have a condition that needs further investigation. However, differences in tone aren’t always immediately evident to parents—especially first-time parents. As the Cleveland Clinic states, “The earliest signs of CP are usually things most people wouldn't know to look for.” It may be a team effort between parents and healthcare providers to spot the early signs of CP.
When parents notice the first sign of delay, they can begin discussing it with their child's primary care doctor or pediatrician. If you have a concern about your baby’s development, it’s best to seek out answers from a qualified health professional as soon as you can rather than wait. The sooner you get your concerns addressed, the better you’re able to get the help your child may need instead of prolonging the matter until it is more clear that there is a developmental delay or something looks off.
Depending on the symptoms, the doctor may refer your child to other specialists for further evaluation, if necessary. However, it's important to note that a child exhibiting these symptoms doesn't necessarily have CP. As a parent, you can advocate to get answers for your child, but try to refrain from assuming a diagnosis before it has been confirmed. In the case of muscle tone, numerous conditions other than CP can also present with hypertonia or hypotonia.
The Eunice Kennedy Shriver National Institute of Child Health and Human Development provides general guidelines on what to look for in infants under six months to over ten months of age:
In terms of a formal evaluation, the Gross Motor Function Classification System is sometimes used to determine the levels of mobility and gross motor skills in a person with CP. Levels measured range from 1 (least severe impact) to 5 (most severe impact). Levels can change as a child ages, but in general, GMFCS levels don’t improve over the age of five.
Although a diagnosis of CP is often given early in a child's life, between 12 to 24 months, many doctors prefer to wait until the child is a little bit older to confirm a diagnosis. In the earlier stages of a child's development, from birth to two years, a child's brain and nervous system is still developing. According to Dr. Rao, “Sometimes the neurological exam can change a lot, just from one month to another, even one day to the next, depending on whether the baby is comfortable, well fed, or angry. If we're going to be giving a diagnosis, we want to be sure of that diagnosis before we provide it.”
Dr. Rao says there might be some other contributing factors involved that make a diagnosis hard to provide. She says there are kids who have traumatic brain injury but don’t develop CP, and then there are those with mild injury who do. What makes it difficult to piece together all the data points, Dr. Rao says, is that the birth process is traumatic, and something might have happened in utero or during the birth process that people may be unaware of.
However, if the presentation of CP is evident, a diagnosis will typically be given earlier. “We do recognize that early diagnosis is important in helping with therapies and things that can make a difference in an impact on the child's developmental trajectory,” says Dr. Rao.
And yet, some children still don't receive a diagnosis until they're older. NINDS states, “If a child's symptoms are mild, it can be difficult for a doctor to make a reliable diagnosis before the age of 4 or 5.” Organizations like the Cerebral Palsy Foundation's Early Detection Initiative seek to bring the diagnosis age down to 6 to 12 months or before the baby leaves the hospital. They state, “This is so important because the brain's ability to form new connections peaks from 0-2 years of life. If a baby starts therapy during this crucial time, they can actually improve and recover function that was lost.” The Cerebral Palsy Foundation now states that in many cases, babies less than one year of age can now be diagnosed with CP.
One question many parents have when their infants have been diagnosed with CP is, Will my child walk? To answer this question, Dr. Collins says providers often don’t know yet but will provide an honest answer even if providers have limited information to work with. He says sometimes, even for infants, they have information that can help them make predictions. “What I really like to emphasize is that we're going to recommend therapies that meet the child, where they're at in that moment, in terms of their function,” Dr. Collins says.
According to Dr. Rao, at an earlier age, a child's brain can rewire and remodel itself. However, in some instances, the injuries are so severe that the brain is unable to overcome them. Therefore, early intervention and diagnosis allow providers to help children stay active, move, interact with people and their environment, and use their bodies to engage the brain to encourage neural activities.
“Even though the most dynamic time of brain development really happens in that first two years of life,” Dr. Rao says, “the brain doesn't finish growing and developing until really early 20s… There's not as much extensive rewiring or neuroplasticity that can happen in the teenage years; really, the critical period is before puberty. However, we do know from adolescence and even adults that there is still some possibility of neuroplasticity and recovery. And so therefore, even in the teenage years, we often advocate to continue with therapies and continue working to try to improve function.”
Starting therapies sooner
Lelah Coppedge, whose son Jack was diagnosed with CP at age three, wished her son had been given the diagnosis earlier. Like most parents, she wanted to know what was going on when her son wasn't meeting his milestones so that she could research and charge a path forward sooner rather than later.
“Back 14 years ago, they weren't saying cerebral palsy; they wouldn't give you the diagnosis until [the child was] three,” she says. “So all up to three years old, I'm going, 'What is wrong with my child?’ No one would say it. And so you're doing tests and genetic testing and spinal taps, and I mean, everything under the sun, because he had a normal MRI.” Even though Coppedge didn't get an answer early on, she knew what she had to do based on her son's symptoms. She took him to physical and occupational therapies.
Dr. Rao says there's another reason to advocate for an earlier diagnosis. “The hypotonic type [of CP] is kind of a basket term for anybody who has low tone,” Dr. Rao says. “Oftentimes, [hypotonic CP] can actually be mimicked by other conditions, which is why there's also a push toward early diagnosis and looking for those other conditions early. Dr. Rao adds, “We often say if there's no clinical history that makes us suspicious of an inciting event that would lead to cerebral palsy because cerebral palsy is defined as any sort of injury to the central nervous system that happens early in development; if there's no history of that, and the baby is showing signs of developmental delay or low muscle tone, then, oftentimes, we'll do a genetic workup to look for other conditions that could mimic cerebral palsy.”
Dr. Collins says an early diagnosis of CP helps prepare families for what to expect. It helps medical providers better predict what the child needs and to help families understand what type of support their child may need now and in the future.
New diagnostic tools have made diagnosis of CP more precise. “We do have a little bit of development in terms of the diagnosis now; it used to be that there were some kids that didn't have any insult and had some form of impairment,” Dr. Rao says. “They were just kind of lumped into this basket of CP. And now there is more genetic testing widely available; it's become more accessible and cheaper. And so a lot of those kids who were previously diagnosed as [having] CP are now being properly diagnosed with a rare genetic syndrome.”
Sometimes, children with CP have a normal MRI, as Coppedge's son Jack did, which makes a CP diagnosis even more complicated. But at other times, a normal MRI can signify another condition. According to Dr. Rao, “Sometimes they say, 'Well, but nothing happened. Pregnancy was fine. Delivery was fine. Why is my child not sitting up?' And, we don't see anything on their MRI; that they used to be just labeled CP. And now we know that that's not what they have.”
Advancement in CP diagnosis is crucial for parents receiving news that their child has CP. Dr. Rao says many companies offer free screenings because they recognize there are genetic conditions where early intervention and recognition is important as there might be treatments available for them. Harvard reports that there are genetic causes in up to one quarter of patients with CP.
Changes in symptoms over time
Although CP is a lifelong condition, it's not a progressive disability, so if properly managed early on, it doesn't get worse over time. Dr. Collins says that whatever happens to the brain in early childhood “is not progressive” and it “doesn’t get worse in terms of neurologic injury.”
He further states, “Some people with cerebral palsy can have symptoms that do get worse, or that do change over the course of their lifetime. For example, someone with spasticity, which has a certain type of muscle tightness, those muscles may get tighter during growth spurts. That's not a change with their brain or change in the way that their brain and their muscles are interacting. But is instead, just related to the way that the body grows in the setting of spasticity, and that spasticity can feel worse during a growth spurt. So it might be that different functional things need to be treated differently. We may recommend different therapies, different medications over a lifetime. But it's not because the cerebral palsy itself is getting worse. Just that we're addressing the way someone's body changes through development and then through adolescence, older life, and adulthood.”
However, if the signs of CP seem to be progressing, it might be best to consider assessments for another condition, according to NINDS.
Some common tests that doctors use to confirm a CP diagnosis and rule out other diagnoses include:
Some children diagnosed with CP, though not all, have co-occurring conditions that might include:
Many treatments are available for individuals living with CP. Some children may need more services while others may need less. It’s essential to remember that the treatments and therapies other kids with CP use may not be beneficial for your kids.
A multidisciplinary treatment approach is generally recommended for individuals with CP. Before starting any treatment and therapeutic plan, be sure to weigh the pros and cons and understand the risks before deciding on a treatment option for your child. Always speak to your health care providers as well.
Medications
Medications that doctors prescribe for CP don’t actually treat cerebral palsy directly. Instead, they are targeted to help relax muscles, which can improve a person’s range of motion, function, and mobility, as well as decrease pain. Such medications include oral muscle relaxants and muscle or nerve injections. “There are a lot of medications that can be targeted, depending on the subtype of cerebral palsy,” Dr. Rao says.
Though widely used in cosmetic procedures and for certain medical conditions, Botox injections can help improve gait and spasticity issues. A device that pumps baclofen directly into the spinal cord is another highly targeted option.
Therapies
With many conditions, including CP, early intervention and therapy is key for helping individuals achieve their goals and participate in society with their peers. Some treatments commonly include physical, occupational, and speech therapies.
Dr. Collins also recommends working with recreational therapists to increase participation with the community and to experience more leisure activities. He also says working with a behaviorist therapist can be helpful in getting individuals with CP more adjusted and acclimated to the disease. And that applies to parents too. A behavioral specialist can help parents with adjustments to “being a parent of a child with a disability,” he says. To learn more about the recommended therapeutic interventions, check out our full article on Common Cerebral Palsy Therapies and Specialists.
Ask your child’s pediatrician or primary care provider for recommendations and resources. They may refer you to your local Regional Center for an assessment, especially if your child is under age 3. Regional Centers provide support to qualifying children with disabilities before age 18, but if your child is over age 3, the school district will be your first stop for assessment. In California, children over the age of 3 receive services such as speech, occupational, and physical therapy through their local school district.
Regardless of whether your child’s assessment is done through the Regional Center or through the school district, “Try to get more than you think you need,” Dr. Rao says. “Then, hopefully, you'll get as much as you need.” And if you feel your child does not get as much as they need, Coppedge says to push for better treatments and better school placements continually. Federal law protects a child with a disability’s right to a free and appropriate public education (FAPE) in the least restrictive environment (LRE), which essentially means your child’s school district must provide them the services, supports, and educational placement they need to thrive.
“Not everybody has the same equitable access to things like testing,” Dr. Rao says, “or even psychoeducational assessments.” Fortunately, a CP diagnosis might qualify a child for public benefits that help children with CP gain access to services they may need.
Managing a child’s care case can be challenging as parents attempt to juggle work and family life balance. Dr. Rao and Coppedge recommend asking for an insurance case manager, whether you have state-funded or private insurance, who can help lift some of the burden since they have a knowledge base that parents might not have access to. Coppedge recalls that her insurance case manager helped her understand how to get pre-approval for services and how to get equipment funded. Undivided can also provide assistance with navigating your insurance coverage.
While some people with CP have an intellectual disability, not all do. Equating CP with cognitive disability is a longstanding myth that those in the CP community have long fought to dispel. However, the reality is that some kids with CP do have intellectual disability. And intellectual disability should not equate to low expectations.
“I think it's really going to be a matter of education," Dr. Rao says. “So educating people that cerebral palsy is a motor disease, and it does not necessarily imply that there is cognitive impairment. Even in the medical community, there's a lot of bias towards that stereotype, and thinking that just because somebody has a disability, they may also have a cognitive impairment.”
Dr. Sarah Pelangka also discusses the stigma toward people with CP and provides a perspective people can adopt to shift their focus. “If we can help educate the adults, as well as the peers, on understanding that, that can have a huge impact, right? Because we're just basing it off of the fact that they look different, when in fact they can still learn just like their peers…. So I think that is something that can be really impactful to push out there for people to understand... 'I'm strong, just like you. I just move in a different way.' I think that can be a really big social-emotional piece for both sides.”
Dr. Collins agrees. “Sometimes there can be a lot of challenges with understanding in the community or at school, and being able to understand all of the things that that child can do. To understand that the child may do things a little bit differently, or may need additional support, but really can do all those things. And allowing a child with cerebral palsy to do the things they're able to do, providing the support to help them do the things they’re able to do, will really help them to thrive.”
As much as we’d like to believe that people will always be kind, the reality is that bullying and unkind behavior can happen, and it’s important to make sure children with CP are prepared to navigate these challenges. Dr. Rao explains why the psychosocial component is so important and why individuals with CP need access to mental health services, too.
Dr. Collins also says, “People with cerebral palsy can function in a whole lot of different ways. There's people with cerebral palsy who are pushed in a wheelchair that they can't propel themselves. And there's people with cerebral palsy who run marathons. There's people with cerebral palsy, who really struggle in school and have a difficult time engaging. And there's people with cerebral palsy, who have multiple doctorates. And so, really the types of ways things can function for a kid and an adult with cerebral palsy is very individualized.”
As for Coppedge, she says, “A lot of people still talk to [my son] like he's a baby. People can't figure out how to be around him and talk to him. And I think that goes for a lot of people with disabilities.” She continues, “The world just doesn't really know what to do or how to talk to them. But he's highly intelligent. He's hilarious. He's so brave. He is the hardest worker. He never gives up. And I think it's really important to teach that to these kids, too.”
Coppedge also stresses the importance of teaching a child autonomy. She says, “We have to teach them how to start taking their own care into their hands, to be self-directed in their strength, and how to dig deep and to keep on going.”
Steers shares that speech impairment can also reinforce the erroneous assumption of cognitive impairment. “Children with cerebral palsy are often expected to demonstrate learning or knowledge in a manner that they are not able to successfully output, such as accurately pointing to a picture. So, too often, the assumption is that they don’t know.” In actuality, many nonspeaking people are quite intelligent, which becomes apparent when they are empowered to communicate with the appropriate tools and supports. We start to form beliefs and judgments that kids with disabilities are not smart enough or don't have the cognition to understand, when really, she says, “we didn't teach them or allow them to share information in a manner that allowed them to share their knowledge.”
Up next, read our articles about Common Cerebral Palsy Therapies and Specialists and Supporting a Child with Cerebral Palsy at Home, at School, and in the Community.
