Movement and Mobility Issues

Our brain controls every movement we make. In Dravet Syndrome, typically one part of the brain that helps to control electrical messages (the sodium ion channel) doesn’t function as it should. 

Although we are still learning precisely how this can cause problems, it’s why up to 80% of people living with Dravet Syndrome report having difficulties with movement and mobility. 

People living with Dravet Syndrome may develop problems with their posture. They may also experience a variety of difficulties with walking, known as ‘gait’ issues.

When do movement and mobility issues usually start?

Generally, children living with Dravet Syndrome start walking at the usual age of 8 to 18 months. But they develop movement and mobility issues as they get older. Typically, someone living with Dravet Syndrome’s ability to walk deteriorates after the age of 10. Many people with the condition become increasingly dependent on their parents/carers to move around and do daily activities.

Getting support

Mobility and movement difficulties are life-long for people living with Dravet Syndrome. Starting therapies as early as possible can help to avoid these difficulties getting worse. You can speak to your medical team for advice and for referrals to:

• a physiotherapist
• an occupational therapist
• an orthotics clinic.

Managing and maintaining mobility

There are things you can do to try and manage and maintain someone’s mobility. This includes:

• specifically designed footwear or support called orthotics
• muscle strengthening exercises
• generally keeping as active as possible, for example through regular exercise, such as swimming (with the appropriate precautions)
  
• getting advice from an occupational therapist about useful home adaptations to help with exercise and maintaining mobility, such as adding rails along the wall.

In the video below, Dr Andreas Brunklaus, Paediatric Neurologist, talks about options for helping with mobility and movement issues. This includes getting a physiotherapy review to identify the right support.