This study tested the safety and effectiveness of a neuroscience-based, multi-component intervention designed to improve motor skills and sensory processing of the more-affected arm and hand in infants with CP where one side is more impacted than the other (asymmetric CP).
In cerebral palsy (CP) muscles are often shortened so much that they restrict joint range of motion and the muscles themselves are weak. Thus, ‘shortness’ and ‘weakness’ are two important needs that clinicians must address.
An international study recently published in the journal Nature Genetics has provided the first firm evidence that for a substantial number of people, their cerebral palsy (CP) may be caused by a genetic mutation, or mis-spelling in the body’s DNA blueprint.
"In addition to commonly associated environmental factors, genomic factors may cause cerebral palsy. We performed whole-exome sequencing of 250 parent–offspring trios, and observed enrichment of damaging de novo mutations in cerebral palsy cases."
Oropharyngeal dysphagia, or OPD, is an impairment of the oral or pharyngeal phases of the swallow. This can impair muscle movements and coordination of the mouth, such as the lips, tongue, jaw, cheeks, palate, and also muscles of the pharynx and the entry to the airway.
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.
As a parent, when it comes to different types of interventions for infants with cerebral palsy, how do you know what you have, what you don't, and what you could get?
Exploration for an infant means discovering anything about that environment. If that infant needs an opportunity to be brought to them, that's okay. Let an infant explore through their senses, whether it's touch, or smell, or taste, or sight, or hearing.
As a physician and researcher, I skeptically looked forward to learning more about mindfulness practice, because there is evidence it helps with stress management, self-regulation, focus, productivity and happiness. As a mom, I felt that weird mix of guilt that I was going to focus on “not-my-children” for a whole day, excited anticipation and anxiety that maybe I would be a complete failure at this. It turns out all the mental baggage I took into the workshop was the exact opposite of what mindfulness tries to achieve. The daily practice has since changed my life.
PTSD can be common in parents after a child with Cerebral Palsy has left the NICU. One of the hardest days of my life as a NICU parent was not what I would have expected it to be. It was the day I went home without my baby, after spending every waking moment since my emergency C-section by his incubator. I never knew I had a dream about what it would be like to have a baby until that dream was taken away.
