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JDVS
  • About
  • JdVS Foundation
  • Community
  • Events
    • 2023 JdVS Summit-Charlotte
    • 2025 JdVS Summit-Chicago
  • Resources
    • Treatment Guide* for Patients and Families
    • Clinical Considerations* for Medical Professionals
    • Medical Advisory Board
  • Donate & Support
  • Register

Guidance from a Physical Therapist

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Audience

  • Specialist

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What makes JdVS kids unique?

Navigating the unique presentation and combination of underlying complexities is a challenge, as are the moments of unadulterated joy and happiness. Finding and then balancing the line between silliness and engaged learning was the most rewarding part.

What strategies have been helpful in working with someone with JdVS?

Use of patient specific activities that drew out an engaged learning brain were essential for the most impactful treatment sessions. Treatment flexibility, clear directions, and the opportunity for sensory breaks made sure clear communication was possible from patient to therapist. This helped me make sure I wasn’t having the child work through a treatment strategy that might not be the most beneficial. Ensuring that patient goals were based on functional performance, participation with peers, and safety also helped provide appropriate expectations.

Working with JdVS kids from a Physical Therapy perspective.

Coordination of care is essential to ensure you have all the information needed when seeing any child. With a child diagnosed with JdVS, this network of providers can be spread wider. The feedback and techniques from speech and occupational therapy sessions played direct roles in PT sessions I’ve had. Communication with physicians and specialists provide valuable information that shaped our PT goals. All of the techniques and information gathered can’t be carried out if you aren’t able to help shape them to the unique qualities that make up every child. Getting to know interests, fears, and coping mechanisms can take time, but this information is essential especially with a child diagnosed with JdVS. All of this together helps expedite reaching strength, balance, gross motor acquisition, and safety goals.

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Disclaimer

Disclaimer: The information provided on this website is to inform and help families cope with the unexpected change in their life due to a JdVS diagnosis. The information contained on this site is not intended to replace information you have received from doctors or other health professionals. We are not doctors, we are parents of individuals diagnosed with JdVS.

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