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Sleep Problems in Children with CP and Their Parents
Early diagnosis begins with a medical history and involves using neuroimaging, standardized neurological, and standardized motor assessments that indicate congruent abnormal findings indicative of cerebral palsy. Clinicians should understand the importance of prompt referral to diagnostic-specific early intervention to optimize infant motor and cognitive plasticity, prevent secondary complications, and enhance caregiver well-being.
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NINDS/NICHD Cerebral Palsy Strategic Plan
The National Institute of Neurological Disorders (NINDS) and the National Institute of Child Health and Human Development (NICHD) are hosting a national cerebral palsy research workshop that will help develop the next US strategic plan for cerebral palsy research, to be held virtually on August 17 and 18.
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Episode 5: Cerebral Palsy Health. Wendy Pierce, MD: What Does a Physiatrist Do Anyway?
On this episode, I have the honor of talking with Wendy Pierce, MD, a pediatric physiatrist at Colorado Children's Hospital about physiatry, also known as Physical Medicine and Rehabilitation. This fantastic field of medicine can be helpful for individuals with cerebral palsy across with lifespan, but it has a confusing name and sometimes a confusing job description. So we set out to help listeners better understand what a physiatrist does.
Photo of Wendy Pierce wearing a dark tan sweater on a light tan background
How important is it to control drooling and other frequently asked questions
Drooling is an important problem for many individuals with CP and there are a number of interventions available to treat symptoms. If an individual with CP or their caregiver have concerns about drooling it is important to discuss with a health care provider. Care pathways such as the AACPDM pathway can be a starting point for shared decision making. In all cases, working together as a team is important in choosing the best alternative. Children and adults with CP may have trouble with drooling, or saliva management. In the medical world, drooling is referred to as sialorrhea. Saliva plays an important role in eating but also can interfere with airway clearance and breathing, as well as social participation. When drooling has this kind of impact it becomes important to consider intervention.
Photo of a young man in a blue shirt, wearing dark sunglasses with yellow rims reclining in a wheelchair with a batman printed neck pillow around his neck. He is in a hospital room and has a feeding tube attached to the wheelchair.
Episode 1. Introduction of "Let’s Talk CP". What Questions Should You Be Asking Your Child’s Clinician?
Our “Let’s Talk CP” podcast series kicks off with a great conversation about what questions to ask your child’s clinician when your child has cerebral palsy. How should you prepare for a medical appointment? What questions should you ask? Should you get a second opinion? Join Cerebral Palsy Foundation host, Cynthia Frisina as she shares candid talk, lessons learned and great advice with fellow moms, Wendy Sullivan and Jennifer Lyman. This episode is made possible with the support of Ipsen Biopharmaceuticals.
Wendy Sullivan has long blonde hair is smiling and wearing a white suit jacket, Cynthia Frisina has long brown hair and is smiling, wearing a black top and Jen Lyman has long, curly brown hair and is smiling wearing an olive green top.
Navigating CP and Depression at the Same Time
There is insufficient research on adults living with cerebral palsy, (as referenced in my previous blog post on cerebral palsy and adulthood). Although there is a paucity of studies examining mental health in this population, medical researchers have speculated that the rate of depression is three to four times higher in people with disabilities such as CP than it is in the general population.
"Navigating CP and Depression at the Same Time" is shown in text above an illustration of a person in a wheelchair colored in blue
Reasons Your Child May Not Be Sleeping
Sleep is important to all of us, but it's especially important for infants. When infants go to sleep, they start to create neural networks about what they've been learning during the day. It's estimated that as many as one in five children with disabilities have a sleep disorder, and that's higher than the rate of typically-developing children. Finding sleep interventions for these children is incredibly important so they can lay down their brain networks and continue to learn during their early childhood years.
Stick figure drawing of two parents holding their child
Owen’s Story Isn’t Over, It Is Just Beginning
Owen is our third baby and after a healthy pregnancy and making it to 38 weeks, I thought we would coast into life with three kids and adapt to the beautiful chaos that is life outnumbered by little ones. Somewhere in between, I ended up watching as my newborn baby was packed up into a life-flight helicopter and whisked away before I even got a chance to hold him. I would do whatever it took to get to Owen at Nationwide Children’s Hospital, I would will him from hundreds of miles away to hang on, to fight long enough for me to get there – and then we could do “whatever it took” together.
Three siblings sitting on a rug with Owen (Age 1) who has CP sitting in the middle