The second Virtual Town Hall featured the experts from Rady Children's Hospital, Southern Family CP Center, and UC San Diego School of Medicine in San Diego, California. This multi-disciplinary panel discussion highlights the latest updates in care of children with CerebralPalsy.
For women with Cerebral Palsy, self-advocacy is probably the most important part, but it's also probably the hardest part because most of those doctors have not encountered women with disabilities. You really have to tell them what you need and tell them what to expect.
When scheduling and preparing for an OB/GYN appointment, women with Cerebral Palsy have additional challenges to consider and address when both scheduling the appointment and once they go their appointment.
For women with Cerebral Palsy, finding a new OB/GYN can be difficult for a variety of reasons: accessibility (both to the building and in the exam rooms), staffing and supports for additional physical needs and more.
One of the things that was identified through research is that patients with cerebral palsy have higher rates of depression and anxiety than you would see in the general population.
5 things for women with Cerebral Palsy to consider when preparing for their OB/GYN appointment
It's really hard just to watch someone walk to decide what's wrong with them. A better way is to do what's called Three Dimensional Gait Analysis, and that's where the child comes into one of our labs. Here, we put markers on their face, hands, and legs. We have a computer and a bunch of cameras all around the room. And then we're able to break down the gait into three dimensions.
When you're looking at setting goals for kids with complex communication needs, don't forget about setting goals that are about them interacting in the classroom. It's not just about punching buttons. It's not just about saying vocabulary words. It's about talking with people and showing who you are. Some specific goals that you can look at are in four areas. Educational goals, social goals, inclusion goals, and goals and independence.
Cerebral Palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. Depending on the part of the brain that is injured depends on how someone’s muscle tone will be effected. For people with spastic CP they have increased muscle tone because of the part of the brain that's injured. If causes very tight muscles which in turn effects the movement of the joints and of the limbs. For others who have dyskinetic CP they lose the ability to have voluntary control over their muscles, and they can have jerky and uncontrolled movement patterns.
As an orthopedic surgeon I take care of children from the time they're born all the way through to adulthood . My oldest patient I have is 87 years old. As part of my practice I'm able to take care of all of their musculoskeletal problems, their problems with their bones and their joints.