Living with CP taught Dr. Kathleen Friel much about educating others about her disability and now about her life threatening diagnosis of Metastatic Breast Cancer.
Our educational series kicked off with a panel of experts from the Weinberg Family CP Center at Columbia University Irving Medical Center in New York City on Thursday, November 5th, 2020 at 6:30pm ET. This virtual event featured a multi-disciplinary panel discussion with Weinberg Family CP Center clinicians and researchers.
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."
As we all know, becoming a teenager means significant upheaval, not only physically, but in terms of friendships, in terms of learning, and life outlook. This is also true for adolescents with cerebral palsy and other developmental disabilities. We know that whilst we may of spent a lot of time focusing on their physical abilities and other difficulties it is not the only part of their life.
Around the age of six all children are going off to school. Children move from explorative play, which is fairly informal to a much more formal day. That can be a lengthy day and it's quite structured. There are a lot of challenges faced by children with cerebral palsy throughout the school year.
We all have different towns and we all have different things that we do in the course of the day. It may be that the student is a great artist or a great writer. When it comes to assistive technology we have to think about what is going to give that student the ability to do what they love without having to see roadblocks and go, "I can't do that”. There are so many tools out there, whether it's a communication app, a video app, a math tool. With assistive technology you are not making the student into what you want them to be.
When treating a child with CP, part of a pediatrician’s job is assessing and treating children with abnormal tone difficulties, as well as other muscular-skeletal problems. From around the age of two years, kids start to develop difficulties with muscle tone that can have an impact on their hip development.
If your child has cerebral palsy, there's a good chance that he or she will have a hip x-ray at some point or they may even require regular hip x-rays. It is important for you to understand the different components of a hip x-ray. Your doctor will be looking at the hip joint itself as well how well the bones are growing.
In general, children with cerebral palsy will have stiffness around the hips and they tend to develop atypical hip positioning as a result of their spasticity. They will develop hip flexion contractures, abduction contractures, and they will have difficulty with seating as well as bathing and hygiene.