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12-Step Process for Diagnosing Cerebral Palsy
Step 1: Parental Observations Outside severe cases, which are often diagnosed
at or within days of birth, parents may question noticeable signs. The primary indicators parents
will notice are developmental delay and impaired muscle tone.
Developmental delay occurs when a child does not develop specific skills within the predicted
time period. Parents might notice the child is not reaching for toys at three or four
months, sitting up by six or seven months or walking at twelve to fourteen months. In
some cases, the child might appear to develop motor skills ahead of schedule. Rolling over
is a significant milestone, but when rolling occurs too early, it can be a sign of abnormal
reflexes. It can also indicate spasticity. Demonstrating hand preference before 12 months
is also an indicator of possible Cerebral Palsy.
Muscle tone is another indicator. Normally, muscles contract when a limb is flexed and
relax when the limb is extended. Muscles that are very tight, or inappropriately relaxed,
can be a sign of Cerebral Palsy, which directly affects muscle tone and posture. Tremors are
also a sign.
Additionally, parents may notice the child seems stiff, has problems swallowing, does
not appear to hear or has eyes that do not seem to focus. The child may experience gastrointestinal
problems, such as vomiting, constipation, or bowel obstruction. Some children demonstrate
impaired oral-motor function with signs of vomiting, aspiration pneumonia, failure to
thrive, drooling or communication difficulties. One half of children with Cerebral Palsy experience
seizure activity. Any of these signs, or others, should be discussed with the child's primary
care physician, preferably during well-baby visits.
Step 2: Clinical Observations Parent observations are an important part
of a doctor's evaluation. Pediatricians use parental input as a basis for further
examination. They will explore signs parents notice and gauge the possibility of impairment.
Well-baby visits are designed for clinical documentation of developmental milestones.
Height, weight, reflex, and age-appropriate behavior are part of developmental surveillance
recommended by the American Academy of Pediatrics for infants at the ages of 9 months, 18 months,
and 30-months of age. When surveillance of a child spurs concern, the Academy recommends
standardized developmental screening tool assessment and early return visits.
In addition, doctors will look for the persistence of "primitive" reflexes that, in typical
development, appear and disappear in a predictable order during infancy. The tonic reflex (when
the baby's head is turned to the side, the baby will extend the arm on the side the head
is facing, while flexing the other arm) appears around four months and then fades away. It
is not a strong reflex, yet in children with Cerebral Palsy the tonic reflex does not always
fade, and sometimes continues to grow stronger, even dominating a child's motor skills.
Doctors examine the child's supine position (retraction of the head, neck and shoulders);
prone position (protective head turns, arm flexor spasticity, and extensor spasticity
of legs); and upright posture (extensor spasticity of legs, reflexes, and protective arm extension).
Many other reflexes develop, then disappear over time. Doctors test and document the child's
development. The information recorded in these records is then used to confirm or rule out
Cerebral Palsy or other conditions.
Step 3: Motor Skill Development Analysis The cause of Cerebral Palsy is either brain
injury or brain malformation occurring during fetal development, birth, or after birth while
the brain is still developing. The brain damage occurs in parts of the brain that affect motor
control. It does not progress, which differentiates Cerebral Palsy from similar conditions. Motor
skill development analysis is used at various intervals to gauge key developmental milestones.
The following are essential in determining the extent, location, and severity of Cerebral
Palsy.
In the case of Cerebral Palsy, developmental motor delay is a key indicator. The pediatrician
will be evaluating:
Muscle tone Movement coordination and control
Reflex irregularity Posture
Balance Fine motor function
Gross motor function Oromotor function
The evaluation of motor skills may help establish the type(s) of impairment and degree of severity.
This is essential in determining the cause or source of impairment. The severity of impairment
also may be necessary in qualifying for benefits and support services.
Step 4: Medical History Review Eliminating other possibilities is a crucial
factor in diagnosis of Cerebral Palsy. Both parents' medical histories are important
to this process. By reviewing medical history of parents, doctors can look for possible
genetic, progressive, or degenerative nervous system disorders. Economic status and social
habits may also be reviewed.
Doctors will also want to know about the child's prenatal history, as well as any complications
during labor and delivery.
Step 5: Documenting Associative Conditions, Co-Mitigating Factors and Ruling-Out Other
Conditions Because there is no test that definitely confirms
or rules out Cerebral Palsy, there is always a chance other conditions must be excluded
from a list of possibilities, 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.
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"
The brain injury or malformation that caused Cerebral Palsy is non-progressive. Many nervous
system disorders do progress. They may start with minor symptoms, but, over time, the symptoms
continue to worsen or multiply. If the child's condition is showing signs of progression,
these signs will help doctors rule out a Cerebral Palsy diagnosis. Like many aspects of diagnosing
Cerebral Palsy, being able to determine the exact cause of your child's challenges requires
observation over time.
Step 6: Obtaining Test Results Many screens, tests and medical specialists
are part of the process of diagnosis. Every state mandates newborn screens at the time
of birth. The tests performed vary by state, but may yield some early results.
Infants who test positive for a developmental delay may be referred to medical specialists
for further evaluations. The pediatrician will document all surveillance, screening,
evaluation, and referral activities in the child's health record. It is suggested that
parents request a written copy of all test results and advice rendered, as well as any
other information presented at various visits to the the doctor's office. These documents
become valuable when speaking with the multitude of practitioners that may be required in the
child's future care. Having the documents on hand will save money and allow parents
to be informed and efficient.
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.
Or, if Cerebral Palsy is eventually diagnosed, they can provide doctors an exact picture
of the injury to the brain. Blood tests may be ordered to check chemistry, plasma and
chromosome levels. Seizure activity will be monitored.
Medical specialists are brought in to test hearing, vision, and perception, as well as
cognitive, behavioral, and physical development. A child may be sent to an orthopedic surgeon
to ascertain delay in motor development, record persistence of primitive reflexes, examine
for dislocated hips, and check on abnormal postural reactions.
A genetic specialist may look for hereditary components.
The lengthy and detailed process can help rule out or confirm Cerebral Palsy, while
also providing a broader assessment of the child's abilities.
Step 7: Diagnosis The months or years it takes to confirm a
Cerebral Palsy diagnosis does not lessen the impact of the news. It can be an emotional
moment for parents.
Many issues that surround the diagnosis of Cerebral Palsy do not have anything to do
with the medical tests and observations necessary to confirm the condition. For example, parents
may initially shy away from the news, especially if they were fostering hope that their child
would "outgrow" the condition. The diagnosis may bring a mixture of fear, guilt, or apprehension.
Some parents wonder if the cause of the child's impairment is somehow their fault, or whether
they did something wrong. Others may be relieved that their child has a physical impairment,
but is expected to live a full, long life.
Doctors, likewise, may not want to deliver a Cerebral Palsy diagnosis until they are
fully certain. A major fear is that a diagnosis of Cerebral Palsy will interfere with bonding
between parents and child. Doctors do not want to misdiagnose the condition and cause
undue stress.
Doctors and parents are aware that early diagnosis can lead to early intervention options. Some
treatment protocols have proven more effective when provided early. A formal diagnosis is
required to obtain government benefits that help a family mitigate the financial burden
as expenses for ongoing testing and medical care pile up.
Debate exists over the best time to diagnose Cerebral Palsy. Issues surrounding the timeliness
of diagnosis focus on three areas:
Early diagnosis – Early diagnosis can lead to early intervention, treatments, therapies,
funding and benefit programs. It can result in misdiagnosis.
Delayed diagnosis – A delay in diagnosis can allow time for the family to bond before
the condition is known. It allows time to observe developmental milestones; rule out
other conditions; and confidently confirm Cerebral Palsy.
Misdiagnosis – Misdiagnosis can occur if signs are not properly monitored, tested,
and confirmed. Or, when other conditions aren't ruled out properly. The diagnosis of Cerebral
Palsy may be correct, but the severity, extent, or co-mitigating factors may be improperly
diagnosed. Step 8: Obtaining a Second Opinion
Parents may seek a second opinion to confirm the diagnosis of Cerebral Palsy and to rule
out the possibility of misdiagnosis. A diagnosis of Cerebral Palsy is enough to warrant a second
opinion. Additional factors that might increase the need for a second opinion include:
When surgery is presented as a treatment option When there are many possible treatment options
When the proposed treatment is unsatisfactory for any reason
When no treatment is presented When parents just feel they require another
opinion The current doctor should not be offended
if parents ask for a referral for a second opinion by explaining that this is a complicated
and important issue for the family. Those who feel uncomfortable asking one provider
for a referral may ask another trusted family doctor, or their health insurance provider
network. The costs and procedure for seeking a second opinion vary depending on the health
care provider, and parents should therefore discuss the intention of seeking a second
opinion with their health insurance provider to fully ascertain whether it will be covered
under the insurance plan.
Second opinions can assist with outstanding questions; remove any doubts; provide a second
opinion on treatment options; and allow for a more informed, educated decision on appropriate
treatment when moving forward.
Step 9: Determining Cause Brain injury or brain malformation is the
root cause of Cerebral Palsy. There are three types of brain injury and a form of brain
malformation:
Periventricular leukomalacia (PVL) – damage to the white matter of the brain tissue
Intracranial hemorrhage (IVH) – brain hemorrhage Hypoxic-ischemic encephalopathy (HIE) or intrapartum
asphyxia – lack of oxygen to the brain (asphyxia) Cerebral dysgenesis – brain malformation
or abnormal brain development The Academy of Pediatrics recommends that
parents attempt to discern what caused the brain damage and at what point in the developmental
process the damage occurred. According to the Academy, cause of brain damage can be
identified in approximately 25% of all cases. Identifying the root cause will provide the
following benefits:
Greater understanding of the child's impairment Identify whether there is recurrent risk in
future pregnancies or family planning Identify specific medical treatments
Identify therapeutic intervention programs Identify early intervention education programs
Identify government assistance, community resources, benefit programs, and funding sources
Further research for prevention and cures Step 10: Care Team Assembly
One of the most important components of parenting a child with Cerebral Palsy is the responsibility
of assembling the proper doctors, therapists, educators, and organizations to provide the
best care, treatment, and support for the child. The goal is to assemble resources that
will help the child succeed.
A care team can evolve over time and is subject to immediate and long-term needs of the child.
The team consists of professionals from different specialties, such as:
Caregivers – daycare, respite, personal assistants, and guide dogs
Support organizations – MyChild™, Cerebral Palsy organizations, community support groups,
disability organizations, counseling services, friends, and family
Educators – school administrators, teachers, speech therapists, and special education support
staff Lawyers – lawyers concentrating in estate
planning, disability rights, birth injury, family law, SSI, school rights, medical malpractice,
and more Government agencies – government agencies
(federal, state and local) offering benefits, education programs, information resources,
disability guidance, health care options, advocacy, and research
Tax and financial planners – accountants and financial planners that advise in special
needs tax advantages, financial planning, wills and trusts, and planning for future
expenses
Step 11: Care Plan Creation A care plan tracks a child's treatment,
including tests, diagnosis, and treatments received. This allows parents to share information
between members of the care team. The care plan is a diary of events, a scrapbook of
medical records, a game plan for future treatment goals, and a collection of test results. It
is a history of the child's care and progress.
The care plan is more, though. Establishing and maintaining a care plan allows easy, efficient
access to valuable information. Keeping receipts organized helps in obtaining tax benefits.
Medical records and test results may be required in an application for benefits and funding.
Planning treatment protocols can help parents plan for financial needs, while wills and
trusts provide for future care of the child in the event the parent can no longer support
the child. Maintaining insurance records helps when paying bills; organized records provide
peace-of-mind. Habits lead to efficiency, and sharing thoughts, feelings and hopes can
be inspiring when reviewing progress years later.
The care plan will continue to benefit the child, and those who will care for them, throughout
the child's life.
Step 12: Embracing a Life with Cerebral Palsy Raising a child who has Cerebral Palsy creates
fresh challenges for the whole family. Research indicates a household with a special needs
child is more prone to depression, suicide, financial strain, relationship challenges,
divorce, and bankruptcy. Others will boast that it can bring relationships together with
purpose.
Embracing a life with Cerebral Palsy requires planning, organization, perspective, adaptation,
and inspiration. For parents, a review of their child's care plan provides a chronology
of choices they've made, steps they've taken, learning they've experienced, and
a glimpse at their hopes and dreams for tomorrow - providing a true source of pride and accomplishment
at the goals achieved and to come. Many learn how to embrace a life with Cerebral Palsy
somewhere inside the journey itself.
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