We got the diagnosis of Cerebral Palsy when Lelia was 18 months. I was really happy, as we didn’t know what was wrong with her before then. She had low tone. She couldn’t roll over. She couldn’t sit up. Of course she didn’t walk. The diagnosis gave it a name, something I could work with, and I became a kind of vigilante mother, determined to get the best care for my daughter.
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.
Many of our products today have accessibility supports in them to the extent where we don't have to purchase anything else. It's already in there. Your phone, your tablet, your smart home devices. If you're going to look for these features on your devices, you can start in your settings. There should be something in there that says accessibility. Go in there, see what's available. The manufacturers have done a really nice job of describing these features right within the settings to give you a sense of what they're going to do.
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.
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.