Updates from the British Paediatric Neurology (BPNA) virtual conference, 7th January 2021.
Dravet Syndrome has been a key talking point during today’s BPNA meeting, with many interesting points raised by our Medical Advisory Board members - Professor Helen Cross (chair), Professor Sameer Zuberi and Dr Andreas Brunklaus. In addition, our chair, Galia Wilson presented on the impact of COVID-19 on families living with Dravet Syndrome and our director, Helen Evans, has been taking part in a meeting with 17 other charities.
Here’s our take on key insights from today’s sessions:
- Prolonged use of sodium channel blockers e.g. carbamazepine during first 5 yrs of life are associated with poorer long-term neurodevelopmental outcomes. If you're seeing prolonged seizures take care with use of sodium channel blockers, even if a Dravet diagnosis is not yet made
- We now know a lot more about the underlying causes of Dravet Syndrome, including that comorbidities are integral not just a consequence of seizures. Neurologists are encouraged consider proactive interventions to treat comorbidities. Multidisciplinary care e.g. with access to Speech and Language therapy, orthopaedics etc, are key to their effective treatment
- Siblings of children with severe epilepsies can experience negative emotional effects due to worry & concern about their brother or sister. BUT if they have more knowledge about the condition, this can have a positive benefit e.g. less anxiety. Families are encouraged to speak to an HCP to support challenges siblings face
- Some topics e.g. risks of SUDEP (Sudden Unexpected Death in Epilepsy) can be difficult to talk about. In a recent study, 40% of parents/carers say SUDEP was not discussed by their HCPs. Neurologists are encouraged to have regular conversations with families about SUDEP to communicate risks & how to manage these
- Galia Willson talked about the support services that DSUK provides for families with Dravet Syndrome. We’re continuing all these services throughout the latest lockdown - to find out more about these visit https://bit.ly/DScovidsupport,
Finally, we want to say thank you to BPNA for facilitating a very productive virtual charities meeting. 17 charities including DSUK presented. It was great to have this opportunity to share experiences and collaborate on issues that matter to patients & their families.
