Await Diagnosis

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The toughest time for parents that suspect their child may have Cerebral Palsy is during the period before they have an official diagnosis. Because, in most cases, obtaining a diagnosis is a long waiting process of evaluations and observations, parents are caught in limbo about something that could have a transformative effect on their child’s future, their family. They worry most about their child’s health, having discovered that their child’s development is slower than that of other children. Could my child have Cerebral Palsy? Could it be something worse? And, the months linger on.

There are no definitive tests for Cerebral Palsy. Diagnosis requires a series of tests, observations, growth charting and specialist consults. Other conditions must be ruled out. In many ways, the unknown is what’s most troubling about the diagnosis process.

Parents who have come to accept the historically lengthy diagnosis process have their hands tied when trying to at least address their child’s symptoms, enroll in early interventions, submit invoices to insurance companies and seek therapies without a formal diagnosis. Diagnosis can take three to five years while the child’s brain is still developing.

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, “Motor Delays: Early Identification and Evaluation,” going to the extent to model an evaluation plan with shorter waiting periods.

There are several coping strategies parents can employ during this time. Personal empowerment, information gathering, envisioning acceptance, and enjoying their child are just a handful of pieces of a puzzle that, in time, will completely assemble.

While physicians are doing their work, and while parents are bonding with their child, answers emerge.

About this stage of the journey

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HOPE

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.

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Helpful suggestions:

  • Review the Cerebral Palsy Risk Factor Checklist and discuss items of concern with your child’s doctor.
  • Review the signs and symptoms of Cerebral Palsy, make a list of items you have observed about your child that may indicate Cerebral Palsy or development delay, and discuss with your child’s primary care physician.
  • Review the steps for diagnosing Cerebral Palsy so you can become aware of the process, the tests and evaluations and the timeframe required to properly diagnose – or rule out – Cerebral Palsy.
  • If your child is developmentally delayed, ask your doctor about treatment and therapy options for your child’s symptoms, even while they are in the middle of the process.
  • Ask your doctor if he or she is aware of the AAP guidelines for diagnosing Cerebral Palsy. If not, print a copy and share with the doctor.
  • Call your local early intervention specialists and discuss whether your child is eligible for enrollment.
  • Review your health insurance options.
  • Review your child’s doctor’s experience and credentials in diagnosing Cerebral Palsy.
  • Seek a second opinion, if needed.
Inspirational Stories and Messages for This Stage of the Cerebral Palsy Journey