We have been privileged to work with several families who have children with Dravet syndrome. The condition can bring many challenges, but the right support can make a significant difference.
Snap Care began supporting children and adults with disabilities and additional needs back in 2001. Over the years we have worked with clients who have a range of conditions, some more widely known than others.
In this series, we look at some of the lesser-known conditions to help raise awareness and provide information that can be especially useful if supporting a client with the condition.
Dravet Syndrome is a rare, lifelong neurological disorder that typically begins in infancy. It’s characterised by severe, difficult-to-control seizures and developmental delays. Beyond epilepsy, individuals often face a range of challenges, including autism, ADHD, speech and motor difficulties, and behavioural issues. These symptoms vary widely in type and severity, making Dravet Syndrome a complex, spectrum-like condition that affects each person differently.
How the right support can help manage Dravet Syndrome:
Having the right support system in place is essential for managing Dravet Syndrome. A tailored care plan that addresses the individual’s unique needs can significantly improve quality of life for both the person with Dravet Syndrome and their family.
Support may include:
- Specialist Care: Working with healthcare professionals who have experience with Dravet Syndrome ensures that seizure management plans are regularly reviewed and optimized. This may involve a combination of medications, dietary therapies like the ketogenic diet, and emerging treatments.
- 1:1 Support: Dedicated, trained professionals can provide consistent monitoring, help manage seizures, and ensure the individual remains safe during and after episodes. Professional support workers also support daily routines, personal care, and communication needs.
- Therapeutic Support: Physiotherapy, occupational therapy, and speech therapy can help manage motor difficulties, improve mobility, and support communication skills. Behavioural therapy can also address challenges like ADHD and autism-related behaviours.
- Emotional and Social Support: The condition can be isolating for both individuals and families. Encouraging social interaction, engagement in appropriate activities, and emotional well-being support is crucial. A skilled support worker can foster these connections, helping to create a more balanced and fulfilling life.
- Family Support: Families benefit from guidance, respite care, and emotional support. This allows them to rest, recharge, and focus on enjoying quality time together without the constant pressure of caregiving.
The right support team can make a world of difference, offering not only practical assistance but also fostering an environment where the individual with Dravet Syndrome can thrive and achieve their potential.
Here are a few helpful links:
https://www.dravet.org.uk/
The National Health Service (NHS) website provides information about Dravet Syndrome, including the different types, symptoms, diagnosis, and treatment options available in the UK.
https://www.nhs.uk/services/service-directory/dravet-syndrome-uk/N10497324