What is the treatment of Rett Syndrome?

There are a variety of ways to help minimize the effects of Rett syndrome. Rather than addressing the syndrome as a whole, most treatments try to reduce specific symptoms of Rett syndrome. These treatments generally aim to slow the loss of abilities, improve or preserve movement, and encourage communication and social contact.

People with Rett syndrome often benefit from a team approach to care, in which many different kinds of health care providers play a role along with family members. Members of this care team may include (but are not limited to):

• Physical therapists, who can help patients improve or maintain mobility and balance and reduce misshapen back and limbs

• Occupational therapists, who can help patients improve or maintain use of their hands and reduce stereotypic hand movements

• Speech-language therapists, who can help patients use non-verbal ways of communication and improve social interaction

Other members of the team may also include developmental specialists, developmental pediatricians, orthopedic surgeons, gastroenterologists, pulmonologists, cardiologists, neurologists, special education providers, and nurses. The involvement of family members is also critical to ensuring the well-being of those with Rett syndrome.

Other options, such as medication or surgery are also effective. For instance, surgery can correct scoliosis for some persons with Rett syndrome. Similarly, anti-seizure medications can effectively control seizures for many affected by Rett syndrome. Other medications can reduce breathing problems and can eliminate problems with heart beat rhythm.

Over-the-counter aids for indigestion and constipation can also help to reduce these problems. Calcium and mineral supplements may also help to strengthen bones, which slows the progress of the scoliosis.