Almost all of us can vividly conjure up an episode of being bullied that occurred in our own lives. Hopefully, fewer of us will have memories of being the bully. These experiences and remembrances often are formative, perceived as hurtful, and can have a long term impact on our health and well-being. For me the memory of being the center of attention in a negative way never quite fades, but with age, the perspective changes to a challenge.
On this episode I talk with two of the world’s leading researchers… Dr. Madison Paton and Dr. Iona Novak on stem cell treatment for cerebral palsy. Stem Cells have been a hot topic in Cerebral Palsy for at least 15 years now, with many parents and researchers hoping that at the least, stem cells will lessen the impact of CP and at most hold the key to a cure. Dr. Paton and Dr. Novak will share their insider knowledge into this subject and help us sort through the hype and so we can hold onto our hope.
Our educational series continued with a panel of experts from Nationwide Children's Hospital on Monday, March 29th, 2021. This virtual event featured a multi-disciplinary panel discussion.
Our educational series continued with a panel of experts from Scottish Rite for Children and the University of Texas Southwestern Medical Center on Thursday, March 25th, 2021. This virtual event featured a multi-disciplinary panel discussion.
Our 3rd Virtual Town Hall featured experts from the Shirley Ryan Ability Lab and Northwestern University in Chicago. This multi-disciplinary panel discussion highlights the latest updates in care of children with #CerebralPalsy.
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.
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.
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.
Purpose of review: Cerebral palsy is the most common physical disability of childhood, but the rate is falling, and severity is lessening. We conducted a systematic overview of best available evidence (2012-2019), appraising evidence using GRADE and the Evidence Alert Traffic Light System and then aggregated the new findings with our previous 2013 findings. This article summarizes the best available evidence interventions for preventing and managing cerebral palsy in 2019.
Wondering what to expect if your child has an appointment with a pediatric orthopedic surgeon? Still confused about the different types and levels of cerebral palsy? Dr. Hank Chambers, who is also the father of an adult son with CP, talks about different considerations for different ages and stages of a child with cerebral palsy.
Preparing yourself and your child well for medical appointments means a better experience for everyone. Our “Let’s Talk CP” podcast series continues Cerebral Palsy Foundation host, Cynthia Frisina talking with Physiatrist Dr. Lisa Thornton about cerebral palsy, spasticity and what to expect at many kinds of medical appointments. Questions include what to expect when procedures like botulinum toxin injections are recommended, how to talk with a clinician when “little ears” are listening, and much more. This episode is made possible with the support of Ipsen Biopharmaceuticals.
Spasticity is usually caused by central nervous system injuries, such as brain injuries or spinal cord injuries. Spasticity is a little different from stiffness.
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.
There are a couple of key things to think about in helping children and adolescents make the transition into young adulthood and independence. One of those things is called mastery motivation and we can see mastery motivation early in life. It's the ability to persist in the face of challenge. If you're growing up with a disability, it can be harder to do things. If you are not challenged, if the environment is not set up correctly, or if you don't have the resources, then you start to feel that you can't master certain kinds of tasks.
When it comes to preparing your child for Botulinum Toxin injections, the first most important thing to remember is to know your child.
In order to get a good education, children need to access the curriculum. That's at the heart of their education. Some of the key challenges of getting students both their education and access to their voice in the class is simply understanding. Preparation for the student with disabilities is key. We have to foster success. We have to build a sense of success in the beginning. That starts with understanding the abilities of that student.
Saturdays were special as a kid growing up in Port Washington, New York. Saturdays meant Burger King outings with my grandparents, a great big slice of trade-marked Hershey’s chocolate pie for me and piping hot oatmeal for them. And we can’t forget about the Kids Meal toys. But on this particular Saturday, everything was different - at the tender age of five, I started to notice that certain aspects of my life were just off.
I don’t know if this is just me, but my time in quarantine has made me have weird flashbacks to my childhood. As a kid growing up with CP, especially with a speech impediment and mobility limitations, my lifeline to making and keeping friends was through AIM (AOL Instant Messenger, for those of you who are too young to remember) and one of the first video chatting platforms, ooVoo. Fast forward 15 years, many of us are in a similar situation. To slow the spread of COVID-19, most of life has moved online, including friendships.
As I progress in my career as a journalist and writer, the more attention and followers I receive on social media. Every so often, I receive a direct message or email from young readers, explaining how I’ve become a role model for them. They express the inspiration they gain from witnessing me not allowing my cerebral palsy get in the way of following my dreams. It was then that I realized I am now the role model that I desperately needed when I was a young girl.
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.
Cerebral palsy is a damage to the developing brain in the motor part of the brain. Individuals with cerebral palsy have problems with weakness and sometimes also involuntary movements.
Spasticity is a condition of muscles that is a velocity resistance to stretch. What that means to a child and to a parent is that if you move the limb slowly, you have a difference than if you move that limb fast. Spasticity restricts movement and it creates a break on the system. It's as if they're trying to move, but they're held back. By treating spasticity, you may improve the range of motion or the action of the movement.
I'm going to be talking about AAC and reading and some different things that you might not think about when you are doing those types of activities. When you're supporting reading for a nonverbal child, whether they use a high-tech system or a light-tech system, like a paperboard, you want to make sure that they have plenty of the opportunities to contribute to the experience. You want to be able to comment. You want to be able to talk about the people, the places, the things, and maybe the feelings that they have.