doctor holding infant during exam

Diagnosis

Parents are often disheartened to learn that there is no singular test that will accurately diagnose a child with cerebral palsy. Once a round of medical evaluations are initiated in order to form a diagnosis, parents prepare for a long and sometimes frustrating process that will, in time, provide answers about a child’s condition.


Diagnosis of Cerebral Palsy

Diagnosing cerebral palsy takes time. There is no test that confirms or rules out cerebral palsy.

In severe cases, the child may be diagnosed soon after birth, but for the majority, diagnosis can be made in the first two years.

For those with milder symptoms, a diagnosis may not be rendered until the brain is fully developed at three to five years of age. For example, the average age of diagnosis for a child with spastic diplegia, a very common form of cerebral palsy, is 18 months.

This can be a difficult time for parents who suspect something might be different about their child. Often, parents are first to notice their child has missed one of the age-appropriate developmental milestones.

If a growth factor is delayed, parents may hope their child is just a slow starter who will “catch up.” While this may be the case, parents should inform the child’s doctor of concerns, nonetheless.

Confirming cerebral palsy can involve many steps. The first is monitoring for key indicators such as:

  • When does the child reach development milestones and growth chart standards for height and weight?
  • How do the child’s reflexes react?
  • Does it seem as if the child is able to focus on and hear his or her caregivers?
  • Does posture and movement seem abnormal?

Doctors will test reflexes, muscle tone, posture, coordination and other factors, all of which can develop over months or even years. Primary care physicians may want to consult medical specialists, or order tests such as MRIs, cranial ultrasounds, or CT scans to obtain an image of the brain. Even once a diagnosis of cerebral palsy is made, parents may wish to seek a second opinion to rule out misdiagnosis.


Why diagnosis is Important?

A diagnosis is important for many reasons:

  • To understand the child’s health status
  • To begin early intervention and treatment
  • To remove doubt and fear of not knowing
  • To find and secure benefits to offset the cost of raising a child with cerebral palsy

A variety of benefit programs are available to children with disability or impairment. To qualify for these programs, the child must have a formal diagnosis. Without a diagnosis, parents can fall into a limbo pattern.


Whose on the diagnosis care team?

The process for diagnosing cerebral palsy usually begins with observations made by the child’s primary care physician, usually a pediatrician, and the child’s parents. There are some exceptions.

If a baby is born prematurely, or at a low birth weight, he or she is monitored closely in the neonatal intensive care unit of the hospital from time of birth. In extreme cases of child abuse, or shaken baby syndrome a pediatric neurologist called to the hospital’s emergency or NICU unit will diagnosis the child’s condition. In the majority of cases the child will attend regular well-baby visits where the pediatrician first uncovers signs of cerebral palsy during examination. In some cases, it is the parents who notice symptoms they relay to the child’s doctor during these visits.

Developmental delay, abnormal growth charts, impaired muscle tone, and abnormal reflexes are early indications of cerebral palsy. Because there is no test that definitely confirms or rules out cerebral palsy, other conditions must be excluded from the list of possible causes, and cerebral palsy must be fully considered. Other disorders and conditions can appear as cerebral palsy, and cerebral palsy is often accompanied by associated conditions that complicate the process of diagnosis.

What tests do they use?

Since there is no definitive test that can diagnose cerebral palsy, doctor’s may utilize one, or a combination, of the following to aid the diagnosis process:

  • Assessing reproductive health factors
  • Reviewing paternal health records
  • Reviewing pregnancy, labor and delivery records
  • Reviewing newborn screens conducted at birth
  • Considering APGAR score
  • Reviewing baby birth, medical, developmental and growth records
  • Performing a physical examination of baby
  • Performing additional screens (hearing, fatty acids, amino acids and hemoglobinopathies)
  • Conducting neuroimaging tests to determine if brain damage exists
  • Performing electroencephalography (EEG) or electromyography (EMG) to analyze nervous system function
  • Conducting lab tests (blood work, urinalysis or genetic testing)
  • Conducting evaluations (mobility, gait, speech, hearing, vision, feeding and digestion, cognitive and rehabilitation needs)

Historically, doctors have been overly cautious when diagnosing cerebral palsy and other developmental delays, in part due to the lack of a definitive testing mechanism, and because they felt test results may not be conclusive until the brain is fully developed somewhere between 3 to 5 years of age. Realizing that this was a crucial time for families to bond with their young child, and for the child to develop their personality, some conventional wisdom is under the assupton that a formal diagnosis may hamper a child’s development and potential for bonding. Others feared a misdiagnosis and wanted to wait until their diagnosis was conclusive.

For decades the protocol for diagnosing cerebral palsy involved observation over months to years, charting developing milestones and noting growth chart vulnerabilities. This can be an extremely trying time for parents that worry about their child’s condition, and have concerns about the need to provide therapy, deploy early intervention and procure adaptive equipment to manage their child’s potential, and minimize the resultant movement and coordination dysfunction. Some parents argue that bonding with their child is a given and that concern should not be cause for undue delay.

And, disappointingly, a small number of parents have expressed their doubts on whether their child’s diagnosis is delayed due to the statute of limitations on litigation should their child’s cerebral palsy have occurred due to medical malpractice or negligence. It is not unheard of to learn that some children are well beyond the brain’s developmental stage at the age of 8 or beyond and still without a formal diagnosis.

Concerned that the medical practitioners were being overly cautious to the extent of placing a child’s treatment progress at risk, The American Academy of Pediatrics on May 27, 2013 issued a clinical report titled, “Motor Delays: Early Identification and Evaluation” to help guide physicians through a 12-step process of diagnosis. The hope is that with a formal diagnosis, children were then able to qualify for early intervention, therapies, treatments and governmental assistance.

To learn about the AAP Clinical Report, visit “American Academy of Pediatrics Issues Clinical Report Urging Early Diagnosis of Cerebral Palsy.” To download a copy of the clinical report, visit “Motor Delays: Early Identification and Evaluation.”

The medical examination process can involve multiple doctors, tests, and appointments. During this time doctors will rule out other similar conditions such as:

  • Degenerative nervous disorders
  • Genetic diseases
  • Muscle diseases
  • Metabolism disorders
  • Nervous system tumors
  • Coagulation disorders
  • Other injuries or disorders which delay early development, some of which can be “outgrown”

Common tests that involve neurologists or neuroradiologists, include neuroimaging, such as cranial ultrasound, computed tomography scan (CT Scan), and magnetic resonance imaging scans (MRIs). These tests allow neurologists to actually “see” the brain. Various disorders, injuries, and conditions yield different results. These can be used to rule out cerebral palsy.

Infants who test positive for a developmental disorder may be referred to medical specialists for further evaluations.

A child may be sent to an orthopedic surgeon to ascertain delay in motor development, record persistence of primitive reflexes, examined for dislocated hips, and assessed for abnormal posture.

Medical specialists are brought in to test hearing, vision, and perception, as well as cognitive, behavioral, and physical development.

A genetic specialist may be consulted for hereditary components.

The pediatrician will document all surveillance, screening, evaluation, and referral activities in the child’s health record.

The lengthy and detailed process can help rule out or confirm cerebral palsy. A formal diagnosis is usually made once the brain is fully developed between 2 to 5 years of age.

  • Pediatrician
  • Developmental Behavioral Pediatrician
  • Geneticist
  • Neurologist
  • Neuroradiologist
  • Ophtalmologists
  • Orthopedic Surgeon
  • Otologists
  • Neonatologists
  • Pediatric Geneticists

After the child has been diagnosed with cerebral palsy, the doctors will ascertain the extent, location and severity of the condition as well as any associative conditions or co-mitigating factors. Cerebral palsy cannot be cured, however it can be managed. The focus of treatment will be on the management of the child’s health status. This often requires a team of medical specialists. For more information on the management of cerebral palsy:

Care Team and Care Plan for Management of Cerebral Palsy


RESOURCES

Diagnosis

For other sources with general information on the cause of cerebral palsy, MyChild recommends the following:

Centers for Disease Control and Prevention CDC

National Institute of Neurological Disorders and Stroke (NINDS)

American Academy of Neurology

American Academy of Pediatrics Cerebral Palsy

March of Dimes



  • gallery_6

    American Academy of Pediatrics Issues Clinical Report Urging Early Diagnosis of Cerebral Palsy

    For decades, physicians have been overly cautious in diagnosing cerebral palsy and other motor delays. But recently, the American Academy of Pediatrics stressed the importance of early diagnosis in a clinical report.
    Diagnosis of and Tests for Cerebral Palsy »

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    The Cerebral Palsy Diagnosis Checklist

    A diagnosis of cerebral palsy will come only after several evaluations, observations and tests are performed. The Cerebral Palsy Diagnosis Checklist allows parents to document test results, appointment outcomes, and formal diagnosis on one easy-to-use form. It is likely parents will share these details with school officials, other health care providers, therapists and caregivers in the months and years ahead. The checklist can be easily stored in a child’s home medical records for easy retrieval.
    The Cerebral Palsy Diagnosis Checklist »

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    The 12-Step Process of Diagnosing Cerebral Palsy

    Parents that suspect a child has cerebral palsy likely wish that a one-step, quick test would confirm that diagnosis. That, however, is not how physicians make a determination regarding cerebral palsy. Getting to a diagnosis is a multi-step, complex process of tests, evaluations, and eliminations that in the end, rule everything else out. Understanding the diagnosis process can be a source of comfort for parents anxious about the process.
    The 12-Step Process of Diagnosing Cerebral Palsy »

  • gallery_6

    Screens, Tests and Evaluations

    One aspect of the diagnostic process a parent will likely need to prepare a child for is the number of medical exams, evaluations and laboratory tests that can take place to determine whether or not a child has cerebral palsy. Though time waiting for a diagnosis is stressful, these tests and assessments allow a parent to come to terms with an eventual diagnosis, and begin early interventions.
    Screens, Tests and Evaluations »

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    The Journey: Awaiting Diagnosis

    A parent may be concerned about developmental delays or a doctor may observe a sign outside of growth norms. There is no definitive test for cerebral palsy, causing doctors to diagnose over time. For parents that suspect a child may have cerebral palsy, the long wait between that initial suspicion and an official diagnosis can be an emotional one. But, what is often a time of anxiety evolves into an empowering experience that leads to acceptance and unconditional love.
    Awaiting Diagnosis »

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    The Journey: Recent Diagnosis

    Many parents find it difficult to explain their emotions and thoughts at the time they receive their child’s diagnosis, and for the years ahead. That’s understandable. It’s a life-altering moment often filled with feelings of sadness, helplessness, shock, anxiety, disbelief, and confusion. But, that gives way to strength, joy, tolerance, and triumphs. It may not be the expected journey we had for our children, but it is a beautiful journey, nonetheless.
    Recent Diagnosis »

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    Care Plan for Managing Cerebral Palsy

    After receiving a cerebral palsy diagnosis, many parents have informed MyChild™ that they are confused as to who to see and how to care for their child. The Cerebral Palsy Care Plan provides an overview of the process from diagnosis to management of care.
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The Unexpected Journey

/the-journey/await-diagnosis/

Awaiting Diagnosis

A parent may be concerned about developmental delays or a doctor may observe a sign outside of growth norms. There is no definitive test for cerebral palsy, causing doctors to diagnose over time. For parents that suspect a child may have cerebral palsy, the long wait between that initial suspicion and an official diagnosis can be an emotional one. But, what is often a time of anxiety evolves into an empowering experience that leads to acceptance and unconditional love.
More »

Cerebral Palsy Diagnosis

doctor checking infant's reflexes

The Importance of Early Diagnosis

Many people involved with the research and treatment of cerebral palsy believe the earlier a diagnosis is made, the better the child will fare. Early diagnosis allows the child to begin treatment before impairments have “set in.”

An infant’s brain, muscles, reflexes, and motor control continue to develop long after birth. For children with cerebral palsy, their brain injury prevents normal development. Eventually, muscles, coordination, and posture may become impaired. Beginning treatment early in infancy can yield some of the largest gains.

Because the young brain is developing (in a way, learning how to be a brain) treatment may help the child’s brain to adjust to the injury. The younger the brain, the more adaptable it may be, perhaps increasing the chance that the brain can “rewire” itself to mitigate the extent of the injury.

Motor control and reflexes are also still developing in babies. Spasticity becomes more apparent as the child grows. During infancy, the child may show no or little spasticity. As a result, the limbs are easier to move, possibly increasing the effectiveness of physical therapy both on the muscles and the brain.

Early diagnosis also enables parents to find benefits and funding for their children. A diagnosis increases the chances of qualifying for Early Intervention programs and receiving state and government aid.

Cerebral Palsy Diagnosis

baby sleeping peacefully

Reasons for Delayed Diagnosis

For all the benefits of early diagnosis, delayed diagnosis does occur – predominantly because the disorder is difficult to diagnose and doctors worry about the impact on parents. Receiving a diagnosis of cerebral palsy can be devastating, and doctors fear parents may withdraw and further hamper the child’s development.

Doctors do not want to deliver premature diagnoses. Where they may suspect cerebral palsy, doctors might keep the suspicions to themselves and talk to the parents about the symptoms. They may mention their suspicions, or just subtly prepare the parents for an eventual diagnosis.

Of course, the main reason to delay diagnosis is the difficulty of clearly identifying the disorder. Many possibilities exit, including the brain’s potential to compensate for the injury. Additionally, a number of other conditions may appear as cerebral palsy. Misdiagnosis is a danger of early diagnosis.

Cerebral Palsy Diagnosis

baby in NICU getting a backrub

Avoiding Misdiagnosis

Misdiagnosing any condition can be harmful to a child and can lead to inappropriate treatment such as unnecessary surgeries, medications, and expense.

Misdiagnosis can mean the condition was wrongly identified, altogether. Or, it can mean the condition was correctly identified, but the subtype was classified in error. Misdiagnosis could also entail wrongly identifying the underlying condition, the cause of the condition, the extent or severity of the condition, or complications of the condition.

For instance, the diagnosis of cerebral palsy may be correct, but the severity, extent or co-mitigating factors may have been improperly diagnosed. Not all specialists agree on the classification of the condition as provided and defined by another specialist.

Commonly diagnosed conditions are misdiagnosed less, while difficult-to-diagnose conditions are more commonly mistaken. Misdiagnosis can be the result of a doctor’s error, misread test results, incorrect laboratory readings, or overlooked alternatives.

It is recommended that parents avoid misdiagnosis by obtaining a second opinion, consulting with specialists, having medical tests thoroughly explained, and becoming educated on the child’s diagnosed condition.

If a child who has cerebral palsy is not diagnosed properly, the untreated impairment can result in more severe spasticity, abnormal posture, contractures and deformities. Other conditions can be mistaken for cerebral palsy.

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