All children with CdCS will require a range of therapies as they develop. The list below is not exhaustive, and all children’s individual needs will differ. Your family doctor (GP) or community paediatrician will usually be the main point of focus and coordinator of therapies. You should get advice from these contacts when first discussing your child’s requirements.
Many children will experience physical difficulties during their development. Physiotherapy can help your child’s physical development, including helping them to sit, stand and improve their fine motor skills. There are specialised physiotherapists who can supply orthotics to help with joint and spinal disorders known as Orthotists.
Occupational therapists work in conjunction with physiotherapy to develop children’s fine motor movements and activities of daily living. They also will be involved in ensuring that your home has the right adaptations for you and your child. If your child needs a wheelchair, OTs will assist you in ensuring that your child has the appropriate chair.
A child with CdCS may experience difficulty in swallowing. Speech therapists may work with your child from an early age to aid swallowing by providing advice on what is the best method of feeding your child.
As your child grows older they may experience problems with their speech, speech therapists will provide guidance on how you can assist your child to communicate. For instance, this could be using sign language or a picture exchange system.
In addition, dribbling is also a common problem for children with CdCS; speech therapists will also provide advice regarding how this can be managed.
Children who do not thrive or have difficulty swallowing may need a dietician, who can provide advice on special dietary requirements, such as high calorie drinks.
Due to the prevalence of behavioural problems in children with CdCS, many will require psychological input and advice for their parents.
In addition, Educational Psychologists may be involved to assess the best educational placement for your child.
Glue ear is common in children with CdCS and therefore children will often undertake tests to assess the quality of their hearing. Many children end up having hearing aids.
Ophthalmologists will assess your children’s eyesight, as problems are more prevalent in children with CdCS.