Latest Coronavirus Guidance for Children and Adults with Dravet Syndrome (30th March)

We are continuing to closely monitor developments with regard to Coronavirus (COVID-19) and keeping in regular contact with Dravet Syndrome UK's Medical Advisory Board.

Our Medical Advisory Board, chaired by Professor Helen Cross, has issued guidance for general consideration by families living with Dravet Syndrome. As with any general medical guidance it is important to consult with your clinician before starting, stopping or changing individual treatment plans. This guidance is correct to the best of our knowledge at the time of publication (Monday 30th March, 11:00am). However, we are mindful this is a rapidly evolving context and guidance may change as more information becomes available. 

Are people with Dravet Syndrome at high risk from COVID-19?

Dravet Syndrome is a spectrum condition, meaning the risks from COVID-19 will vary depending on a person’s overall health.  Whilst fever sensitive epilepsies have been assessed as being low risk by the Association of British Neurologists (26.03.20), people with Dravet Syndrome have other health problems known as comorbidities.  People with Dravet Syndrome may be at higher risk if their comorbidities mean they have compromise of the respiratory function such as recurrent chest infections, scoliosis or swallowing difficulties in the absence of a feeding tubes.  A determination of low, medium or high risk should be clinician led.  Guidance from the Association of British Neurologists on the risk from COVID-19 for people with neurological conditions can be found here.  Guidance from the Government on people who are at very high risk of severe illness from COVID-19 and classified as extremely vulnerable can be found here. 

What measures should be taken to protect people with Dravet Syndrome from COVID-19?

Advice on the measures needed to protect against infection from COVID-19 is being regularly updated.  The two main sources of information are the NHS website and the Government’s website.  Currently (27.03.20) everyone is being told to socially distance by:

• Staying at home
• Only going outside for food, health reasons or work (but only if you cannot work from home) 
• Staying 2 metres (6ft) away from other people 

Shielding is the most effective form of infection prevention for all people with Dravet Syndrome, where practically possible.  Government guidance on shielding for people who are extremely vulnerable and at very high risk of severe illness from COVID-19 can be found here.  If you are unsure whether or not a person with Dravet Syndrome is extremely vulnerable please consult with your clinician.  The government has also issued guidance for residential care, supported living and home-care which can be found here.  Helpful information for carers can be found on the Carers UK website.

What treatment plans will people with Dravet Syndrome need for COVID-19?

Any treatment plans for people with Dravet Syndrome and COVID-19 should be decided in consultation with clinicians, taking into account the latest information from reputable bodies.  As people with Dravet Syndrome have fever sensitive seizures, the main issue is the likelihood of fever reported to be present for 65% to 80% of all people infected with COVID-19.  We would expect treatment plans to be as follows: 

• Administer paracetamol to control fevers
• Consider extra clobazam during the course of the illness (if already prescribed)
• Consider early application of rescue medication if seizures occur

Is it safe to give ibuprofen to people with Dravet Syndrome and COVID-19?

We are aware that there have been some case reports suggesting that ibuprofen could aggravate the symptoms related to coronavirus infection. The World Health Organisation and the European Medicines Agency have both recently stated there is, as yet (23.03.20), no strong evidence establishing a link between ibuprofen and worsening of COVID-19. It is reasonable for patients affected by COVID-19 to primarily take paracetamol to control fever.  As always, treatment should be decided in consultation with your clinician taking into account the latest information from reputable bodies.  For further helpful information regarding ibuprofen and managing fever in children, please visit the Royal College of Paediatrics and Child Health (RCPCH) website here.

Will the situation with COVID-19 lead to shortages of anti-seizure medicines?

Epilepsy Action and the Epilepsy Society both have helpful guidance on the availability of anti-seizure medicines.  According to Epilepsy Action (27.03.20): “The Department of Health and Social Care is working with drug companies to minimise any impact of coronavirus on drug supplies. Drug companies have already built up stockpiles of medicines in preparation for Brexit and have now been asked to maintain this level of stockpiling. This should mean medicines will continue to be available, even if there are temporary disruptions to the supply chain. We don’t currently know of any coronavirus-related drug shortages.  If we find out about any shortages of epilepsy medicines, we will post these on our Drugwatch webpage.”

Further information:

Please check https://bit.ly/2UtnJei for the latest government guidance on social distancing. More information is available on coronavirus here https://www.nhs.uk/conditions/coronavirus-covid-19/.

For more information about our Medical Advisory Board, click here.

We will continue to monitor developments closely with the support of our Medical Advisory Board and through information provided by Public Health England and bring you further updates on a regular basis. In the meantime, please keep safe, keep well and stay at home.