This systematic review looks at all available evidence for pharmacological/neurosurgical interventions for managing dystonia in individuals with cerebral palsy to inform the AACPDM care pathway.
As a mother and a pediatrician, I’ve both felt the strain of pandemic parenting directly and indirectly. I’ve made decisions about my own family and sending our kids to daycare and school, and I’ve stayed up worrying about how parents are supposed to make these difficult choices with so little support.
There are so many different causes for potential pain that it can be hard to find the cause. If you have CP or are a parent of someone with CP it is really important to empower yourself with information on pain including what causes it and options for treatment. You need to work out what is causing the pain not just mask it with pain medication.
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 we have a physical disability, our bones can get a bit weak or osteoporotic. Something that can be improved is promoting bone health for people with cerebral palsy.
It is important to understand the brain injury for each individual person, because they can be really different. Where the injury is can give us important clues to what motor problems that individual will have. The time you have the biggest risk to having a stroke is as a baby, not as an adult so it is important to understand what may be happening in the infants brain.