There is currently no cure for TRAPPC6B-related syndrome. However, many treatments and therapies can help manage symptoms and improve quality of life. Your child's care should be coordinated by a team of specialists.
Key areas of care:
• Seizure control: Your child's neurologist will recommend the most appropriate anti-seizure medication with regular follow-up
• Developmental therapies:Physiotherapy for movement and balance; occupational therapy for daily activities and fine motor skills; speech and language therapy for communication support
• Communication support:Picture boards, devices, or other tools (AAC) if your child is non-verbal
• Behavioral support:Psychological support and behavioral therapy for autistic features or behavioral challenges
• Regular brain scans (MRI): To monitor any changes in brain structure over time
• Eye check-ups: Some children may have vision problems such as squinting (strabismus)
• Growth and nutrition:Regular monitoring of weight and height; support with feeding if needed
• School and learning:Children benefit greatly from special educational support tailored to their needs
Early intervention — starting therapies as early as possible — gives children the best chance to reach their potential.
