What is Cornelia de Lange syndrome?
CDLS is a lifelong condition, across a relatively broad spectrum of characteristics, caused by a genetic mutation.
Superheroes with this syndrome often have differences in their bones, short statures and a learning disability. Our superheroes are non-verbal and communicate to us using vocal sounds, or Eye Gaze!
How can physiotherapy help?
In CDLS, the muscles and joints themselves are not affected, but the messages telling them to work are reduced or absent. Physiotherapy helps to promote and maintain new physical skills, utilising the neuroplasticity of the brain.
Gross motor skills
Children with Cornelia de Lange syndrome typically have delays in their gross motor skills. We teach these skills through functional and play activities, by working on motor planning, body awareness and movement patterns to encourage independent transitions.
We make gym workouts fun! Superheroes with CDLS usually work with us to strengthen their global muscles used for sitting and standing up tall, as well as their rotator muscles for transfers. As our clients are non-verbal, we use exercises with eye pointing, and repetitive playing toys to encourage muscle sets. Due to differences in bones, and a short stature, muscle imbalances (overworking and underworking of the muscles) are common in these children so specific strengthening for weaker or inactive muscles is usually recommended.
Maintaining range of movement
As Cornelia de Lange syndrome affects the central nervous system, high tone or hypertonia, and muscle stiffness is common in later life. We measure range of movement and postural analysis results every six months to ensure that contractures and deformities are kept at bay for as long as possible.
Sometimes hips can become displaced if children don’t weight bear as much as their peers, eg kneeling, crawling, standing and walking. Then the hips don’t develop like they should, and are at risk of subluxation. At BBP, we work with our superheroes on a thorough active and passive standing programme, to encourage good hip development and prevent the risk of subluxation.
24-hour postural management
Having an aligned posture, and eliminating difficult, inefficient movements is vital for having fun and playing! We work with OTs to provide the best postural management for relaxing, playing, and having fun! This is vital to maintain range of movement.
Function and participation
All of our superheroes’ physio goals are aimed at functioning and participating in home, school and play. We will work hard to find out your child’s interest, and create goals suited to them and their family’s desires.
Bumble Bee Physio’s superhero with CDLS is working hard on pushing up with his legs to weight bear. This is getting him ready for transfers on a flight to his winter family holiday, where he hopes to do adapted skiing! Wow, what an adventure!
To enquire about FUN physio for your CDLS superhero, say hello to our team by contacting us here!