The American Academy of Pediatrics has updated its recommendations for Primary Care Providers to provide a "Medical Home" for children and youth with cerebral palsy. This comprehensive update gives primary care pediatricians the guidance they need to address the many needs that children and youth with CP experience and coordinate care across disciplines. The Cerebral Palsy Foundation has created a checklist to help guide you in raising your child with CP to living the healthiest life possible and ensure that you and your pediatrician are addressing all of your concerns.
Though the initial insult or injury to the brain that causes cerebral palsy is non-progressive, aging with cerebral palsy and lack of physical activity during critical periods of development can impact biologic and metabolic function for adults with cerebral palsy.
There are multiple factors that impact bone health, including birth weight, nutrition, medications for seizures and/or reflux, genetics, and physical activity. Targeted exercise to improve bone health in childhood can be sustained into adulthood, and childhood is the best time to promote bone health.
All adolescents and young adults experience some peer pressure to engage in drinking or other risky behaviors. Adolescents with cerebral palsy engage in risky behaviors just like other teenagers. Some families find it helpful to sign what's called, a Contract for Life, or a Contract for Safety, with their child. The parent agrees not to yell in the moment and to have a conversation about it the next day. That's one way that adolescents and parents can create some zone of safety around drinking.
Up to 50% of adolescents with cerebral palsy have an intellectual disability, as well as a physical disability. Adolescents with intellectual disabilities still need sexual health education, they just need it in a way that's more individualized so that they can understand it and use it.
When you use alternate means of communication it can be really frustrating to go out in community. It is hard to know whether people are understanding you and whether they will take the time to listen. A lot of times it's hard for people to admit that they're not always comfortable with a device or a wheelchair or person who does things differently. So the more we can expose and educate people the better off we all will be. When we talk about acceptance, we're not just talking about people in society accepting people with disabilities. We're also talking about people with disabilities who are using alternate means of communication and how difficult it is for them to be out in the community.
When first meeting a parent who's had a child newly diagnosed with cerebral palsy, I really want to try and help them understand their baby. It can be difficult for parents to take it in all at once and many leave that first interview quite overwhelmed, but you're going to meet some really important and helpful people.
Babies develop about 80% of their brain growth over the first two years of life, and it's also when all the connections in the brain, what we call the white matter, which is the cables in the brain, grow and develop and connect to the cortex.
A lot of parents don't realize that their baby, all the skills that they have. So they can look at you, they can follow you. They're already starting to imitate you, and through the first few months of life, they're already starting to learn to reach and grasp toys, and to have nonverbal communication with you.