Diagnosing CP

Before I dig into the difficulties of diagnosing cerebral palsy -

This an incredible story about two parents, Adele and her husband Laurence, both diagnosed with CP. Even if you only have time to watch the first couple minutes, the video brings up some really interesting issues. Parents with disabilities face a lot of stigma and a lot of logistical complications as they navigate the healthcare system and the physical demands of raising a child.

There isn't just one diagnostic test to determine whether a child has CP or not. At regular well-child checks, a child's healthcare provider will monitor their development, and at certain ages (9, 18, and 24 or 30 months) will do a series of tests to see how the child's motor skills, language, and social skills compare to other children their age. Through these tests, the difficulty with muscle control that defines CP can be identified.

Providers will look at things like a baby's height and weight, posture, reflexes, muscle tone, and interaction with parents.

Some children are more difficult to diagnose than others. I've highlighted the diversity of experiences and issues faced by people living with CP, and that diversity is even present in infancy. Some people with CP may have gross motor development delays that are large enough to be seen by a caregiver at 9 months. Others might have mild movement delays that aren't clear until the child is two years old.

It's also important to remember that a diagnosis of cerebral palsy does not mean anything certain about a child's future. Adele says in the documentary above that the doctors her family worked with told them she would never walk-- and yet as an adult woman, she walks smoothly with a cane, and is an adept mother.

Learn more about CP diagnosis at cerebralpalsy.org and from the CDC.

What causes CP?

Before we get into the inner workings of cerebral palsy, this week's story is from Victoria Conrad. It's been inspiring to read and listen to so many portraits of people living with CP. Each person is affected so differently, and has different strategies for adapting to their lack of muscle control.

Cerebral palsy is a set of muscle control disorders that are thought to be caused by a lack of oxygen to the brain of a fetus or newborn-- CP is tied to a number of different risk factors, including some infections during pregnancy, lung immaturity (especially in premature newborns), seizures shortly after birth, a knot in the umbilical cord, or the newborn breathing in some of its first bowel movement during labor. The many different potential causes of CP are still being researched.

This research is crucial. Cerebral palsy affects many different parts of a child's life, and the lives of their loved ones.

There is a great deal of research into medical malpractice and cerebral palsy cases, as well-- some groups blame medication and delivery errors. These concerns make it even more crucial for the specific causes of CP to be identified.

Sources

Mathewson, M. Pathophysiology of muscle contractures in cerebral palsy. Physical Medicine and Rehabilitation Clinics of North America. February 2015; 26 (1): 57-67. doi: 10.1016/j.pmr.2014.09.005

Epidemiology-- Who does CP affect, and why?

This week I want to let Jamaul Thomas and his family have the first word.



According to the Centers for Disease Control and Prevention (CDC), cerebral palsy (CP) is the name for a number of disorders that all affect a person's balance, posture, and ability to move. The CDC estimates that in the U.S., an average of 1 in 323 children have a CP disorder-- making CP responsible for the most common childhood motor disabilities.

In the U.S., the CDC states that CP is more common among Black children than Latino, Asian, or White children. It is also more common in boys than in girls. Children with CP also commonly have another disorder-- the most common co-occurring disorders are epilepsy and autism spectrum disorder.

Cerebral palsy is linked to the lack of oxygen in the brain of a fetus, newborn, or infant-- but there are many different ways that oxygen can be blocked. Some children with CP were affected by a traumatic birth, in which there was a problem with their umbilical cord or with blood flow to the placenta. Others suffered strokes or hemorrhages as newborns.

The more we know about the root causes of a disorder, the easier it is to decrease the number of people it affects. With a group of disorders like CP, there are so many potential causes that its occurrence is difficult to control-- but there are some things that women can do to increase their fetus' access to oxygen, and to decrease their child's risks of experiencing CP.

In a study from 1996 to 2008, researchers found that women were significantly more likely to deliver a baby with CP if they had had, during pregnancy, vaginal infections (especially untreated infections) or fever, or had smoked 10 or more cigarettes per day. 81,066 mothers and their newborns participated. By accessing prenatal care, getting treatment for infections and illnesses, and cutting down on or stopping smoking, women can decrease their risk of giving birth to a child with CP. However, these services are much harder to access for some women than for others-- for example, women living in rural areas, women unable to get time off of work for prenatal visits, and women with traumatic experiences from dealing with the healthcare system may not get the care, education, or support they need to make these changes.

There is still a great deal of research to be done on the causes and risk factors of cerebral palsy-- and there are many situations in which a child's CP was unavoidable by either the parents or by healthcare providers. It is clear, however, that providing easy access to quality prenatal care and education for all women is a good place to start in reducing the high rates, and discrepancies, in children with CP.


Sources

Boyle, CA et al. Trends in the prevalence of developmental disabilities in US children, 1997-2008. Pediatrics, 2011.

Streja, E et al. Congenital cerebral palsy and prenatal exposure to self-reported maternal infections, fever, or smoking. American Journal of Obstetric and Gynecology. October 2013; 209 (4): 332.

Not the Same

As I've read and watched stories shared by people living with cerebral palsy (CP) and their families, I've found that one message appears every time: We are not the same as one another. Each of us is unique, with a different set of strengths and needs.

And so, I'd like to begin each post by sharing a story from a different person affected by CP. I'll also post resources on the right, mostly blogs from people living with CP and their caregivers, to highlight the diversity that exists within this set of disorders.

The first story is Maysoon Zayid's, a comedian living with cerebral palsy.

Not only does each individual living with CP have an entirely unique set of physical symptoms, but each person has developed their own way of thinking about, describing, and coping with their own CP.

Cerebral palsy isn't just one disorder-- it's the name of a group of movement disorders. All of these many versions of CP are grouped together because they each limit activity and motor control, and have all been linked to interrupted development of the affected person's brain either in utero or as an infant.

Unlike other disorders affecting muscle control, such as amyotrophic lateral sclerosis (ALS) or multiple sclerosis (MS), cerebral palsy is present and can show signs from the time of birth, and its affects normally do not increase over time. In fact, with physical therapy and consistent support, some people born with CP do gain the muscle control they need to walk, write, communicate clearly, and live independently. CP also does not affect a person's intelligence or their ability to relate to others-- although they are traced back to the brain, the CP disorders are movement disorders, not cognitive disabilities.

Each person's CP can be classified both by the number of limbs affected, and by the loss of muscle control experienced.

Source: infographiczone.com

The number of limbs involved varies from monoplegia, with one limb (usually an arm) affected, to quadriplegia, with all four limbs affected. For some people with CP, control of speech and swallowing can also be difficult.

Muscle control changes can be spastic, or tight and rigid (the most common ; athetoid, limiting control and coordination; ataxic, affecting balance and movement through space; or mixed, combining parts of these three categories.

Next week, I'll be posting on the epidemiology of cerebral palsy, or how and why researchers currently think it affects certain people, and how we might be able to reduce it-- and sharing another story from a person affected by CP.