Behaviours That Challenge

Research suggests that around 50% of individuals with Dravet Syndrome develop behaviours that challenge.

Coping with behaviours that challenge can be very difficult for many families living with Dravet Syndrome. Research suggests that around 50% of individuals with Dravet Syndrome develop behaviours that challenge, which can have a significant impact on quality of life for all the family. In a small number of cases, behaviours that challenge can include aggression, self-injury, withdrawal, and disruptive or destructive behaviour.

For this reason, it’s important to actively address behaviours that challenge and not feel that these are something you just have to live with. There’s also never any need to feel embarrassed about behaviours that challenge. These can arise due to limitations in understanding (for example, due to language difficulties or environment), communicating or pain. It’s not bad parenting.

Behaviours that challenge’ is not a diagnosis in the same way as other comorbidities mentioned on this website. However, it is still important to raise these with your medical team. If your child/adult shows signs of behaviours that challenge, the first step should be to talk with your medical team in identifying and diagnosing the specific behaviour issue (for example, some aspects of behaviours that challenge can be improved with access to appropriate treatment) and putting an management plan in place.

the Challenging Behaviours Foundation

The website for the Challenging Behaviours Foundation is a very helpful online resource, with a wealth of information.

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