My Child Received a Late Diagnosis of Cerebral Palsy—What Do I Do?

Cerebral Palsy Diagnosis

illustration of family faced with many planning needs for raising a child with cerebral palsy

Cerebral palsy may be diagnosed early in a child’s life but, in many cases, parents don’t learn that their child has cerebral palsy until later. A cerebral palsy late diagnosis can be difficult, but this condition is manageable at any age when you know what to expect and how to handle these challenges.

When Is Cerebral Palsy Usually Diagnosed?

Research indicates that parents recognize the symptoms of CP at a mean age of 13 months, but it can take much longer for physicians to determine the cause of the child’s developmental delays.

There is a mean delay of 23 months between the time that parents recognize symptoms of CP and the time that they take their child to a doctor. CP is diagnosed by a doctor at a mean age of 5 1/2 years. What may seem like a cerebral palsy late diagnosis could be in line with these averages. Still, other parents receive a much later diagnosis beyond the age of 6.

What Causes a Late Diagnosis of Cerebral Palsy?

Cerebral palsy is notoriously difficult to diagnose. There are many misconceptions about cerebral palsy that make it difficult for parents to know what to look for. Some common myths about CP are that it:

  • Makes it impossible for children to walk
  • Causes an intellectual disability
  • Prevents children from communicating
  • Worsens over time

None of the above statements are true. However, parents who don’t have experience with cerebral palsy patients are unlikely to have an in-depth understanding of the condition. Caregivers should never feel guilty about a late diagnosis of cerebral palsy, as cases can vary greatly, and even trained healthcare professionals are hesitant to diagnose the condition without extensive testing and observation.

Children’s brains develop at different rates. It can be difficult for a physician to differentiate between cerebral palsy symptoms and normal reflexes of a young developing child, particularly in cases where the CP is mild.

How is Cerebral Palsy Diagnosed?

There is no test that definitively confirms or disproves a cerebral palsy diagnosis. CP is a movement disorder that delays many of a child’s developmental milestones. As doctors and parents monitor the child’s development, they may notice some of the signs of cerebral palsy. The American Academy of Pediatrics recommends well-child visits with a physician at regular intervals in a child’s life. Your child should see a pediatrician at 9 months, 18 months, and 24 or 30 months. Most delays are recognizable by 30 months, if not sooner.

When developmental delays are recognized, the doctor will perform a more detailed evaluation to help diagnose the cause. This may include:

  • Referrals to one or more specialists such as a child neurologist, developmental pediatrician, neurodevelopmental pediatrician, pediatric rehabilitation doctor, or pediatric physiatrist
  • Brain imaging tests
  • Magnetic resonance imaging (MRI)
  • X-ray computed tomography (CT) scan
  • Genetic or metabolic testing
  • Electroencephalography (EEG) or electromyography (EMG)
  • Lab tests like blood work or urinalysis
  • Cranial ultrasound
  • Review of the child’s medical records, including newborn screens and Apgar score
  • Review of the paternal health, pregnancy, labor, and delivery records

Understanding a Late Cerebral Palsy Diagnosis

It can be difficult to receive a cerebral palsy diagnosis later in a child’s life. Some physicians delay their diagnosis until the brain is fully developed between the ages of 3 and 5. Others have delayed diagnosis until much later, with some children learning that they have CP at the age of 8 or later. This typically happens when symptoms are mild and can be misidentified.

What to Do with a Cerebral Palsy Diagnosis

Though a cerebral palsy late diagnosis may feel frustrating, confusing, or even frightening, it’s important to understand that this is a very manageable condition. As soon as you receive this diagnosis, you should move forward to create a treatment plan for your child. You may want to consult with specialists such as an orthopedic surgeon, developmental-behavioral physician, ophthalmologist, or neurologist.

Find a care team that you’re comfortable working closely with. These professionals will serve as a powerful resource for helping your child. Every case of CP is different, so it’s best to get information directly from a physician who is involved in your child’s care. While support groups can provide advice and encouragement for parents, they cannot replace the specialized knowledge and resources that are available from your child’s doctors.

Identify ways that you can support your child’s future development. This might include:

  • The use of mobility aids
  • Special educational strategies
  • Pain management
  • Medication for muscle tightness
  • Physical therapy
  • Speech and language therapy
  • Recreational therapy

Though there are many ways you can manage cerebral palsy, this condition can still have a major impact on the child and their family. If you believe that your loved one’s CP could be the result of medical malpractice, you could be eligible for compensation. Consider contacting the Cerebral Palsy Family Lawyers at Janet, Janet & Suggs, LLC.



Reviewed by:
Trish Fletcher, MS, BSN, CRNP, NNP-BC, ALNC
Neonatal Nurse Practitioner | Birth Injury Legal Nurse Consultant

Tricia is a dedicated, focused, Birth Injury Legal Nurse Consultant and Neonatal Nurse Practitioner with more than 25 years of experience. Her strong clinical and critical thinking skills, paired with expertise caring for neonates in a Level III Neonatal Intensive Care Unit (NICU), ensures meticulous medical records review. READ FULL BIO

Was Your Child's CP Preventable?