Joubert Syndrome Type 6 (JS Type 6) is a rare neurodevelopmental disorder that affects coordination, muscle tone, vision, and learning. With such a complex condition, no single therapy or specialist can address every need. Building a strong, collaborative therapy team is one of the most important steps a family can take to help their child grow, learn, and thrive.
Here’s how to form and manage a multidisciplinary care team that supports both your child’s development and your family’s journey.
Building a Supportive Therapy Team
Managing Joubert Syndrome Type 6 isn’t a one-specialist job. Because the condition can affect movement, vision, speech, coordination, breathing, and learning, a multidisciplinary approach gives your child the best opportunity for growth and engagement.
Who Might Be on Your Child’s Team?
- Neurologist – to monitor brain function and development
- Pulmonologist – for breathing support
- Gastroenterologist – for feeding and digestion
- Ophthalmologist – for vision concerns (e.g., nystagmus, oculomotor apraxia)
- Physical Therapist (PT) – to build strength, balance, and motor skills
- Occupational Therapist (OT) – to support daily routines, hand use, and sensory needs
- Speech-Language Pathologist (SLP) – for feeding, early communication, and speech
- Early Intervention or Developmental Specialist – to guide learning and play
- Social Worker or Care Coordinator – to help with services, insurance, and emotional support
Tips for Team Building and Coordination
📅 Start with Early Intervention
In many regions, free or low-cost services are available for children under age 3. These programs help coordinate therapies and family goals.
📘 Keep a Care Binder
Track appointments, test results, therapy goals, and daily notes in one organized place. It becomes a powerful tool during medical and school meetings.
📱 Use Shared Communication Tools
Apps or email threads can help multiple providers stay on the same page about medications, feeding changes, or sleep logs.
🙋 Don’t Be Afraid to Lead
You are the expert on your child. Your insights guide the team—especially in rare conditions where not every provider has deep knowledge of Joubert Syndrome.
What Makes a Great Therapy Team?
- Consistency: Providers who show up regularly and adjust plans as your child grows
- Flexibility: Willingness to try different approaches if one method doesn’t work
- Connection: Therapists who build rapport with your child—and with you
- Collaboration: Professionals who communicate with each other and respect your role as caregiver
“Our therapy team works like a family. They celebrate every small milestone, from holding a toy to taking a breath break before trying again. We’re not alone—and that changes everything.”
– Panassea family story
Final Thoughts for Families
Joubert Syndrome Type 6 may bring early and complex challenges, especially with breathing, feeding, and motor development. But with early intervention and a team that supports your child’s whole self, progress is always possible.
From learning how to safely feed your baby, to celebrating that first head lift in PT, or watching your child smile in response to a favorite sound—you are building a life full of growth, resilience, and connection.
At Panassea, we are here to support that journey. Whether you’re assembling your first care team or adjusting to new therapy goals, we offer tools and heart-centered support for every step.
📘 Explore More Resources
Download our free caregiver guides:
- Understanding the Brainstem and Cerebellar Impact
- Tracking Motor and Language Development
🎥 Upcoming Webinars
✔ Feeding and Breathing in Neurological Conditions
✔ How to Coordinate a Multidisciplinary Team
✔ Milestone Tracking in Rare Genetic Syndromes
📩 Need help finding therapists or building your care team?
— we’re here with personalized guidance and compassionate support.
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