In this 2022 episode of "Let's Talk CP" host Jen Lyman talks with neurosurgeon, Dr. Debbie Song, and physiatrist, Dr. Marcie Ward about their role in the care of Cerebral Palsy at Gillette Children's.
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.
What do you do when you want to help your child but your local providers don't have the resources? You travel for treatment. In this personal story, Sophia's family describes their experiences traveling to Gillette Children's for treatment, including both neurosurgical and orthopedic surgeries.
Cerebral palsy is an injury to the brain, but what we find is that it has a lot of effects on how you use your muscles.
For people with a physical disability, activity is a lifestyle. It's something that can start in physical therapy, but it really is something that has to be carried over into their everyday lives. What has happened over the years is we're understanding the importance of mobility.
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.
Early interventions for CP should be based on the strongest possible scientific evidence for benefit and should have the smallest possible risk of harm. In the US, early intervention (EI) is a system of services available under the age of 3, to support infants and toddlers with developmental problems and their families as they interact with and care for their child.