What Treatment is Available for CHARGE Syndrome?
Mike many disorders, there is no cure for CHARGE syndrome, treatment focuses on the management of symptoms which requires a multidisciplinary approach. Treatment can be separated into three key components, these include:
Medical plan
This initially tackles any possible life threatening congenital abnormalities that may cause the child to have difficulties breathing or eating. The infant may need to be placed on a ventilator to ensure that his or her respiration is stable. A speech pathologist will then assess the infant’s feeding skills to ensure that they are safe to swallow fluids and solids depending on the age of the infant. Nasogastric feeding may be required for infants that are not safe to swallow orally.
Surgical Plan
Surgical treatment is essential in patients with Charge syndrome to correct the various anomalies depending on the individual’s presentation. Common surgical procedures that a child with CHARGE syndrome may have to undergo include a tracheostomy to stabilise the air passage, Myringotomy and tympanostomy tubes (grommets) inserted to treat ear infections such as otitis media, a gastrostomy and fundoplication may be done if there are further feeding complications.
Ongoing management
Ongoing management involves a number of different specialists to ensure proper functioning of all parts of the body. This often includes ophthalmology, cardiology, otolaryngology, speech therapy, occupational therapy, audiology, neurology, physiotherapy and gastroenterology.
As the individual may experience some hearing loss due to congenital deformity and ear infection they are susceptible to speech and language delay. A speech therapist is often required to assess and manage the individual’s speech and language development. Clefting (a hole or gap) of the Lip or Palate also has a significant impact on the production of speech sounds. Once the child has undergone surgery to rectify the cleft lip or palate, a speech pathologist is required to retrain the speech sounds and this can be an ongoing process until the child’s oral structures have fully developed to their adult form.
Are children with CHARGE Syndrome eligible to receive Government funding for therapy?
Children who have been diagnosed with of a range of disorders, including CHARGE Syndrome, may be eligible to receive funding for therapy and resources until your child turns 7. The Better Start for Children with Disability initiative includes up to $12,000 in funding for early intervention services and treatments for eligible children. Additional assistance is also available for eligible children who live in outer-regional, rural or remote locations to help with the costs of accessing services. A Medicare rebate is also available for eligible children up to the age of 13.
If you have questions about speech pathology for children with CHARGE Syndrome, contact your local doctor who will arrange for you to see a speech pathologist.
