Management-new

Physical Therapy & Adaptive Techniques

Physical therapy should be initiated early and assessed frequently in CLN2 disease for best results

CLN2-specific physical therapy can help maintain function and extend independence for children for as long as possible

Early intervention with various types of therapies—physical, occupational, and speech—is important, with a special emphasis on physical therapy to help sustain function for as long as possible. Some experts recommend physical therapy as often as 2 to 3 times per week.1

Goals of CLN2 disease physical therapy are to:

  • MAINTAIN activities of daily living
    • Promoting comfort
    • Extending independence and function
  • OPTIMIZE adaptive equipment
    • Enabling ambulation and motor control
    • Ensuring posture
    • Relieving pain
    • Supporting food intake
  • REDUCE the risk of secondary complications

Motor control interventions include:

  • Gross motor exercises
  • Fine motor exercises
  • Visual-motor coordination exercises
  • Passive range of motion exercises

Because skills are lost rapidly, early use of adaptive devices along with management strategies should be considered1

Therapy chairs—maintain ability to sit and stand upright

Walking and standing devices—facilitate eating and speaking, and may be used to manage movement disorders

Orthoses/braces—provide stability to address symptoms based on loss of function, like ataxia

Ramps and other in-­home equipment—assist with ambulation

Experts recommend including an integrative therapy to help further promote positive stimulation, strength, flexibility, comfort, and mobility. For example, integrative therapy may include any of the following:

  • Acupuncture
  • Swimming/water therapy
  • Massage for hypertonia and pain control
  • Hippotherapy early in the disease
  • Art
  • Music

As with the management of any disease where children become immobile, the same care must be taken in CLN2 disease to reduce complications including prevention of bed sores, contractures, and calluses.

Reference: 1. Williams RE, Adams HR, Blohm M, et al. Expert opinion on the management of CLN2 disease. Poster session presented at: The 12th Annual WORLD Symposium; February – March 2016; San Diego, CA.