One page summary: Cerebral palsy: what it is and what to expect

In two sentences

Cerebral palsy is a group of lifelong conditions that affect movement and posture. They come from an injury or a difference in the developing brain, before birth, during birth, or in early childhood. ¹

The brain injury itself does not get worse over time. What can change is the body: muscles tighten, bones grow, and a child's abilities shift as they grow. That is why therapy is not a course you finish.

The numbers, with their sources

• How common it is. About 1 in 345 children in the United States has cerebral palsy, based on CDC tracking of 8-year-olds ²
• The most common motor disability of childhood. CDC describes cerebral palsy as the most common motor disability in childhood ²
• When it starts. The brain injury or difference happens before birth, during birth, or in the first years of life. Most cases begin before or around birth ¹
• How movement is described. The GMFCS scale has five levels, from walking without limits at level I to being moved in a wheelchair at level V ³
• Lifetime cost estimate. CDC estimated about $921,000 per person in 2003 dollars for people born in 2000, covering medical care, other direct costs and lost productivity ⁴
• When it can be diagnosed. A confident diagnosis or a high-risk designation is possible before 6 months corrected age using a combination of MRI, a standardized motor assessment and a neurological exam ⁵

What to do this week

1. Get the four-part diagnosis in writing: type, distribution, GMFCS level, and associated conditions.
2. Refer to early intervention today if your child is under 3, or to the school district if they are 3 or older. You do not need a diagnosis to refer. ⁶
3. Ask for a brain MRI report if one has been done, and ask what it showed.
4. Ask whether genetic testing is indicated, especially if the MRI is normal.
5. Ask when hip surveillance starts and how often.
6. Apply for a Medicaid waiver in your state now, because of the waiting lists. Use the financial help finder.
7. Ask about pain and sleep at the next visit, even if nobody has raised them.

Questions to take with you

Take these with you. Write the answers down in the moment, because you will not remember them later.

For the pediatric neurologist or physiatrist

• What type of cerebral palsy is this, which limbs are involved, and what GMFCS level?
• What did the brain MRI show, and does it suggest when the injury happened?
• Should we do genetic or metabolic testing?
• What are the chances of epilepsy, and what would a seizure look like in my child?
• What should we be doing now that we will be glad we did in five years?

For the therapy team

• What goal are we working toward, and how will we measure it?
• How much of this should we be doing at home, and can you show me?
• Is constraint-induced therapy appropriate for my child?
• When should we look at a communication device?
• What equipment will we need in the next year, and who orders it?

For the orthopedic surgeon

• When does hip surveillance start and how often are X-rays repeated?
• What are we watching for that would change the plan?
• What is the goal of any surgery you are proposing, and what happens if we wait?
• How long is recovery, and what does the family need to do during it?

You can also build a printable list with the question generator.

Where to read more

The full page on this condition covers how it happens, causes split into what happens even with perfect care and what is associated with gaps in care, signs by age, diagnosis, treatment, outlook, daily life and lifetime cost.

Read the full page on Cerebral palsy: what it is and what to expect

Related pages are listed at the bottom of it, including the events that can lead to this condition and the guides that cover therapy, school and money.