What is Cerebral Palsy (CP)?

Cerebral Palsy is a “blanket diagnosis” Doctors use in reference to any one of a number of Neurological disorders in Children. CP is a permanent disorder affecting body movement, muscle coordination, and motor skills, but is not progressive. In other words, while the condition doesn’t get better, it doesn’t get worse.
Although cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves. It is caused by abnormalities inside the brain that disrupt the brain’s ability to control movement and posture.

When do you get CP - What causes it?

This is a loaded question. We know only a fraction of what we should on what causes CP, when it happens, and why. What we DO know is that roughly 70% of the cases occur as a result of a brain injury that occurred while the baby is growing in the womb. (Fancy name for this is Congenital Cerebral Palsy). Another 20% of the cases are the result of Congenital CP due to circumstances at birth. While it typically doesn’t present to parents or doctors for months (as was the case for Nicholas), Congenital Cerebral Palsy is the result of conditions at or before birth. More research is needed to better understand why Congenital CP happens, and improve treatments and brain activity.

The remaining 10% of the cases in the United States are the result of conditions after birth. This could be the result of head trauma (a fall, car accident, abuse), or the result of a brain infection (ex: bacterial meningitis). In these cases, we know the cause, but more research is needed to understand treatments and brain activity improvement.

How is it diagnosed – what should I look for if I’m concerned?

Parents, family and Doctors typically raise the first warning signs. Typical development milestones are missed, motor skills are lagging, and typical movements (grabbing, crawling, walking) are not coming naturally. A Physician and/or Specialist should be contacted in cases you think there may be delays or milestone misses. All kids are different, and each presents differently. Here are a couple of GENERAL symptoms that a child with CP may exhibit:

• lack of muscle coordination when performing voluntary movements (ataxia)
• stiff or tight muscles and exaggerated reflexes (spasticity)
• walking with one foot or leg dragging
• walking on the toes, a crouched gait, or a “scissored” gait
• variations in muscle tone, either too stiff or too floppy
• excessive drooling or difficulties swallowing or speaking
• shaking (tremor) or random involuntary movements
• difficulty with precise motions, such as writing or buttoning a shirt

Diagnosis by physicians often is based on physical examination and observance. Slow development, abnormal muscle tone, and/or unusual posture are early signs of CP. Reflex studies, like the Moro reflex are used. The Moro Reflex is elicited by holding the child on his back and quickly extending the head, or letting it fall back. The response is extension, or opening of the arms and straightening of the legs, followed by flexion of the arms and legs. Typically, Moro Response disappears after 6 or so months, but remains in kids with CP for extended times. Brain activity scans and imaging also helps doctors better understand the diagnosis, and the extent of the brain injury. CT scans, MRI, or Ultrasonography may be tests you hear the doctor recommend. These just give the doctors a more detailed picture that will help identify what to do next.

Understand that at Diagnosis, Severity of the Cerebral Palsy is difficult to accurately know. It is a parent’s nature to want to know what is wrong, and how to fix it. This is not always something that can be offered.

Are there different types?

Yes. Cerebral Palsy is a complex brain disorder. How CP presents itself through your child or family member depends on which part of the brain was affected. Here is a high level overview of each type of CP:

Spastic Cerebral Palsy is the most common form of CP impacting 70-80% of kids diagnosed. In these cases, a child’s muscles may have abnormal stiffness or “tone”. Think of it as a constant “flexing” of specific muscles in their body that they cannot control. Spasticity, or the level of tone in their body, can vary significantly. You’re child may present similarly, but know there is not one typical version of how spastic CP presents.

Doctors my attach words like hemiplegia, diparesis, quadriplegia, among others. Again, since the brain is so complex, Spastic CP is not a “one size fits all” Doctors need to attach more characteristics to more accurately define what the child illustrates. The extra words do that, and describe where the spasticity is on the body, and what type: Hemi (side of the body), di (lower body), and quad (all limbs) identify where the impacts are; Plegia (paralyzed) and paresis (weak muscles) tell how the muscles are presenting. Example: Spastic Quadriplegia means all 4 limbs present with paralyzed spastcity, or stiff muscles. The remaining 10% of the cases in the United States are the result of conditions after birth. This could be the result of head trauma (a fall, car accident, abuse), or the result of a brain infection (ex: bacterial meningitis). In these cases, we know the cause, but more research is needed to understand treatments and brain activity improvement.

Dyskinetic Cerebral Palsy (includes Athetoid, choreoathetoid, and dystonic CP)

Affects 10-20% of all CP diagnosis. Slow, writhing movements are typical, with drooling and speech delays common due to the lack of control on facial muscles. Movements often increase and can be triggered more intensely with emotion, and disappear while sleeping. As an example, when Nicholas would get excited, his arms and legs would present with significant tone. This is common for kids with Dyskinetic CP.

Ataxic Cerebral Palsy

Affects 5-10% of all CP cases. This is far more rare, and presents with a child’s difficulty with balance and proprioception. Proprioception is the ability to know where your limbs are in space and the ability to move confidently without watching your limbs or where you are going. Proprioception is sometimes called kinesthesia. Unsteady walking, difficulty with quick, precise movements like writing or buttoning a shirt, and can present with trembling arms and legs when trying to perform a specific action.

Combinations

You may be thinking that one of these fits someone you know well, or may show some characteristics of all of the forms. That is common – Nicholas presented with multiple forms as described above. Don’t focus so much on the “label” of the type of CP other than for reasons to identify therapies and treatments.

What are other symptoms that could go along with CP?

You may be catching on, CP is not a one size fits all! Some of the following list MAY accompany the child. It doesn’t mean your child will get one or many of the other concerns. The effects can come and go, and can present in varying levels of severity:

• seizures
• vision, hearing, or speech problems
• learning disabilities and behavior problems
• mental retardation
• respiratory problems
• bowel and bladder problems
• bone abnormalities, including scoliosis

Are there different levels of severity?

YES! There is a wide lens that captures the diagnosis of Cerebral Palsy – from a limping leg to a child unable to move on their own. Both could have the same diagnosis – one would look very obvious, but you wouldn’t know the case next door was also CP.

How is it treated?

There are multiple treatment plans available to you – some traditional, some not. I would encourage you to understand all of the options, and ask the advice of professionals and parents that have lived through those questions. Please link to TREAMENTS for more information.

What is the prognosis if my child is diagnosed with CP?

This is not an easy question to answer. There are countless variables involved that impact long term prognosis. Typically, by the age of 4-7, it is easier to identify long term capabilities, but further treatments could impact that. My advice, don’t get caught up in this. It is EXTREMELY important, and we all want our kids to be the best they can be, but it is easy to focus only on therapies, and not let children be children. More research is needed, and advances need to take place so a childhood is spent having fun instead of constantly working through therapies.

What can I do to help my child or loved one?

Emotional support is vital. Love and support them. Let them know they are not broken. Physically, therapies (physical and occupational) are an important aspect of getting what you can out of the capabilities your loved one was given. Commit to making all therapy appointments as if it were your job. Most importantly, look out for their best interest. No one can do that better than you.

How can I help Smiles from Nicholas on CP?

Many ways! Please see the Volunteer postings listed on the home page. Whether its sharing your stories, treatments, shoulder to cry on, or whether you sponsor events to raise money for better options for our kids, there are many ways that you can help. Don’t worry, if you only have a couple hours a week, we’ll have something for you. We are committed to making a difference, and cannot do that without your help.