From Ameeka George, MS, CPNP
When your child is possibly diagnosed with a complex disease like Cerebral Palsy, life can get very stressful and confusing, with more questions than answers. Check out our roadmap to Cerebral Palsy to better inform you, and help you start the conversation with your pediatrician.
What is Cerebral Palsy (CP)?
Cerebral Palsy, commonly referred to as CP, is a group of motor disorders that affect a person’s ability to move and maintain balance/posture [1]. It is the most common motor disability in childhood affecting 1 in 345 children[1]. There are varying degrees of involvement ranging from mildly affected (GMFCS 1) to severely affected (GMFCS V). There is a classification system that was developed to categorize the degree of motor impairment. Remember that this does not correlate to cognitive abilities! CP is believed to be caused by brain damage sustained while the child is in utero or during the birth process [1]. The etiology of CP is actually unknown and is being researched quite extensively. It is important to learn the early signs of CP and keep track of children’s milestones so that they can be appropriately managed and plugged into services at an early age!
What specialist should I connect with if my child is diagnosed with CP?
Your child’s pediatrician/pediatric provider is going to be the most important provider as they are seeing your child and evaluating them frequently during the first few years of life for well child checks. Developmental surveillance is very important for diagnosis CP. Your child may be referred to a pediatric neurologist, developmental pediatrician, and/or pediatric physiatrist should CP be suspected by their primary care provider [2]. At some point, your child should also be evaluated by orthopedics for surveillance and treatment as well. Typically, this is not the first provider that you will be referred to. Last, but not least you will need to be plugged in with early intervention services including physical therapy, occupational therapy and speech therapy if needed. Your child’s PCP can assist with all of these referrals - this is your point person!
What should I ask my Pediatrician?
-Is my child meeting his or her milestones?
-Always make sure to check in with your PCP about your child’s milestones if you are concerned! The AAP recommends formal developmental surveillance at 9 months, 18 months and 24 or 30 months till age 2.
-Does my child need early intervention?
Ask your PCP about early intervention! They can direct you to your local state office. See the link below for direct information by state for early intervention services.
https://ectacenter.org/contact/ptccoord.asp
How is CP diagnosed?
Generally diagnosed based on clinical exam and abnormalities noted in tone and/or gross motor delays in the first 2 years of life [3].
The clinical imaging modality of choice is a brain MRI. Sometimes cranial ultrasound can be done, but it is not necessary required to make the diagnosis.
How is CP treated?
Treatment for CP is a team effort! Your PCP will become your point person for referrals and your child should receive individualized care based on his or her specific needs. Treatment often starts with therapy, medicine management for tone (spasticity) ,and routine follow up with orthopedics for any alignment issues that develop as a result of the abnormal tone associated with CP. Remember, you are not alone! The most important thing to remember is that you will have a team of specialists to guide you every step of the way :)
Ameeka George, MS, CPNP is a board certified Pediatric Nurse Practitioner specializing in Pediatric Orthopedic-Spine Surgery, with an emphasis on Cerebral Palsy, Scoliosis and autism.
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