What are the treatments for Rett syndrome?

Most people with Rett syndrome benefit from well-designed interventions no matter what their age, but the earlier that treatment begins, the better. With therapy and assistance, people with Rett syndrome can participate in school and community activities.¹

These treatments, forms of assistance, and options for medication generally aim to slow the loss of abilities, improve or preserve movement, and encourage communication and social contact. A list of treatment options is presented below; the need for these treatments depends on the severity of different symptoms.^2,3,4

Physical Therapy/Hydrotherapy

• Improves or maintains mobility and balance
• Reduces misshapen back and limbs
• Provides weight-bearing training for patients with scoliosis (an abnormal curvature of the spine)⁵

Occupational Therapy

• Improves or maintains use of hands
• Reduces stereotypic hand movements such as wringing, washing (a movement that resembles washing the hands), clapping, rubbing, or tapping
• Teaches self-directed activities like dressing and feeding

Speech-Language Therapy

• Teaches nonverbal communication
• Improves social interaction

Feeding Assistance

• Supplements calcium and minerals to strengthen bones and slow scoliosis
• High-calorie, high-fat diet to increase height and weight⁵
• Insertion of a feeding tube if patients accidentally swallow their food into their lungs (aspiration)⁵

Physical Assistance

• Braces or surgery to correct scoliosis
• Splints to adjust hand movements

Medication

• To reduce breathing problems
• To eliminate problems with abnormal heart rhythm
• To relieve indigestion and constipation
• To control seizures