AAP Urges for Early Diagnosis

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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.

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

From the moment a child is diagnosed with Cerebral Palsy, it’s as if a clock has been set on a child’s ability to expand their capabilities. And generally, the earlier that clock is primed, the more likely it is that the child will be able to maximize his or her potential.

Physicians – particularly pediatricians that are charged with the responsibility of monitoring a child’s developmental advancement and growth benchmarks – know this is the case. More often than not, they have been trained to put parents and children through a long process when diagnosing Cerebral Palsy, primarily because the brain doesn’t fully develop until the age of 3 to 5. And, because there isn’t a test that can definitively diagnose Cerebral Palsy, doctors are cautious, needing to rule out other conditions and for fear of misdiagnosis that could bring harm to the family.

However, that cautious approach means that some children that could be diagnosed and begin essential treatment are being unduly delayed.

The American Academy of Pediatrics has weighed in on this issue in its clinical report called “Motor Delays: Early Identification and Evaluation.” In the report, the Academy stresses the importance of early diagnosis as a way to pave the way for a child to receive interventions that will help him or her master everyday tasks, increase mobility and improve their quality of life. Early diagnosis can also address the ongoing anxiety parents have, for years, in trying to find peace with their child’s health condition.

According to the report, pediatricians and pediatric neurologists often encounter children with delays of motor development in their clinical practices. Some medical practitioners – rightly or wrongly – hold the belief that the wait can create a bond between the parent and the child, one that may not develop if the parent feels their child has a chronic disability.

Some believe the correct protocol is to wait until the brain is fully developed, but many are questioning why they still do not receive a diagnosis until well past the age of 8, 10, or 12?

Frustrated parents are languishing at the fact that, when diagnosis is unduly delayed, their child lacks the governmental support, educational services, and medical therapy that they require and their child deserves, but which is not provided without a formal diagnosis. And, sadly, some parents – hopefully in rare cases – are left wondering if the diagnosis is delayed to cover up mistakes that can lead to litigation for lifetime benefits due to medical malpractice – often bound by a statute of limitations on when litigation can be pursued.

But, in a bold action, American Academy of Pediatrics is now strongly urging everyone to place these thoughts into history, and do what is most beneficial to the child – diagnose as early as possible so the child can have access to the supports they so deserve.

“Earlier identification of motor delays allows for timely referral for developmental intervention as well as diagnostic evaluations and treatment planning,” the report said.

The report represents a change in how pediatricians and other physicians would diagnose Cerebral Palsy. The report gives physicians a 12-step guide for evaluating children for developmental and physical delays in the hope that interventions will begin sooner, as opposed to later.

So, why would a diagnosis be delayed?

Any parent of a child with Cerebral Palsy will say that getting to a diagnostic conclusion about their child’s condition was a long, trying process. Sometimes a process that can take years can be devastating if a parent knows that something is wrong with their child, but is not getting answers.

While parents wait, valuable time is passing by, and options for early therapeutic and treatment interventions are lost. Over and over again, studies have shown that the earlier a child undergoes treatments and therapies, the faster he or she will realize positive outcomes from those interventions.

So, why would a diagnosis be delayed? That’s a tough question. One reason is that a physician might not want to give a child and his or her parents what is surely to be a devastating diagnosis until the physician is very sure that diagnosis is accurate. Because there is no test for Cerebral Palsy that yields a definitive diagnosis, the process of confirming Cerebral Palsy is a process of elimination.

What the Academy’s report stresses is that no matter what the actual condition a child has, or the nature of a brain injury is that caused the neuro-motor delay, it’s important to begin the early intervention process as soon as a parent and physician realize that a developmental delay is afoot.

“The concerns of both parents and child (sic) health professionals should be included in determining whether surveillance suggests that the child may be at risk for developmental problems,” the report said. “If parents or health care providers express concern about the child’s development, administration of a developmental screening tool to address the concerns may be needed.”

Report recommends assessments,
underscores the benefits of early interventions

Early interventions are those therapies and treatments that help a child develop within the scope of his or her disability. This allows physicians to introduce remedies that can help expand a child’s capabilities; it’s proven to be beneficial when the brain is still making valuable connections. Typically, early interventions begin sometime prior to the age of 3 years old – the years when the child’s developmental pace is fast. In most cases, early intervention should address movement, cognitive development, social interaction, and behavior.

The Academy reports make some recommendations that should allow a parent to begin early interventions much sooner than they may have in the past. They include:

  • Pursuing diagnostic tests while concurrently referring patients to early invention programs
  • Taking infants to preventive care visits and standardized developmental screening at the nine, 18 and 30 and 48 month well-child visits.

Additionally, the report makes several recommendations regarding the scope of such assessments.

“Evaluation begins with a complete physical examination, with special attention to the neurologic examination and evaluation of vision and hearing,” the report said. “Children with motor delays related to systemic illness often show alterations in their level of interaction with their environment and general arousal.”

Evaluations should include the examination and assessment of several factors; the neuro-motor examination is of vital importance in this regard. This examination should include a cranial nerve examination to make determinations about a child’s eye movements, response to visual confrontation, and pupillary reactivity. All of these assessments could yield important clues about the nature of a child’s developmental condition.

The report also recommends that as soon as possible, physicians should look for increased muscle tone, which may indicate the presence of Cerebral Palsy, in accordance with the recommendations of the American Academy of Neurology. This can be achieved by performing imaging tests such as an MRI of the brain.

Another factor that physicians will take into account is whether a child is exhibiting signs of spasticity, dystonia, athetosis, or hypotonia because these conditions are highly indicative of, but not exclusively limited to, people with Cerebral Palsy.

These conditions, simply by the fact that they exist, are indicators that a child may have particular physical issues, which gives medical professionals clues they need in order to devise an effective plan of treatment.

Of course, all testing should be performed in the context of the child’s medical history, including prenatal and perinatal complications, development and physical growth, the report said.

Time is of the essence

The early childhood years, regardless of whether a child has a disability or not, are considered crucial to a child’s development.

It’s during this time that language and communication skills develop. It’s a time when children make powerful connections to their parents, siblings, other family members and to their environment. As they grow and go to school, children learn how to interact outside of the home, and how to function in a learning environment.

It’s for these reasons that early interventions – in the form of whatever therapies and treatments a child may need – are so important. Being an infant is an eventful time for children in terms of what they achieve; it sets the stage for future successes that build on those skills. A child with disabilities may require help in navigating around obstacles.

There’s another benefit of early intervention that the report touches on that can benefit children. Because parents are the ones that have the most contact with a child, they are likely to know their child’s physical capabilities and limitations better than anyone else. For this reason, parents can greatly affect a child’s treatment, for the better, if given an opportunity for input.

“It’s essential [for physicians] to ask parents broad, open-ended questions and listen carefully for any concerns,” the report said. “Some concerns may be stated explicitly, others may be suggested through statements of perceived differences between child’s abilities and those of their age-matched peers.”

Finding a medical home to serve as a base of operations will help maximize the effectiveness of early intervention programs, the report said.

“The initial responsibility for identifying a child with motor delay rests with the medical home,” the report said. “By using the algorithm presented here, the medical home provider can begin the diagnostic process.”

Children can benefit from support services available in their communities; a child’s health will improve only if his or her medical condition is properly managed through a network of care.

Parents of children with disabilities have numerous concerns about their child’s health and welfare, and it’s extraordinarily difficult for them to hold off on seeking early interventions because their child does not have an official diagnosis or, worse yet, bypass such interventions because the diagnosis was received past the time in which the child can enroll.

The Academy’s recommendations, because they get the ball rolling earlier without undercutting the medical investigation into a child’s condition, are likely to be greeted positively by parents that feel the need to be more proactive about a child’s health.

In the end, all of the efforts a physician will undertake is in service to their patients. Children with disabilities need as many tools as possible to adapt and overcome their physical or developmental condition. That’s the purpose of early intervention – to make sure all of those goals become a reality.

For more information

On May 27, 2013, the American Academy of Pediatrics (AAP) released a Clinical Report in Pediatrics® titled,”Motor Delays: Early Identification and Evaluation,” detailing the process and need for early diagnosis of motor delays. To download this report now and share with your child’s primary care physician, visit Motor Delays: Early Identification and Evaluation.