Latest Coronavirus Guidance for Children and Adults with Dravet Syndrome (17th March)

Posted 4th March 2020 in News

It continues to be an unsettling time for our families with the spread of coronavirus (COVID-19). We are closely monitoring developments and keeping in regular contact with Dravet Syndrome UK's Medical Advisory Board to seek their expert opinion on how the virus might impact people living with Dravet Syndrome.

Our Medical Advisory Board 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 from our Medical Advisory Board is correct to the best of our knowledge at the time of publication, however we are mindful that this is a rapidly evolving context and guidance may change as more information becomes available.

As of Tuesday 17th March (10:00am), the latest guidance is as follows:

Whilst there is an increased risk from respiratory infection for those with significant motor disorder and reduced mobility, it is reassuring that reported cases in children to date have been mild to moderate. 

The main issue for people with Dravet Syndrome is the likelihood of fever, reported to be in 65% to 80% of cases. We would expect treatment plans to be as follows: 

Based on the information currently available to our Medical Advisory Board, they have advised that there is some evidence for ibuprofen aggravating or prolonging coronavirus. They advise that it appears reasonable for patients affected by COVID-19 to primarily take paracetamol to control fever. However they have also stressed there may be some situations where ibuprofen is indicated and important. Treatment should be decided in consultation with your clinician.

With respect to questions regarding the availability of medicines. A recent update from the European Medicines Agency has confirmed that so far no reports have been received of shortages or disruptions to medicines supplied to the EU (including the UK) due to the spread of COVID-19.

If you, or anyone that you live with, has symptoms of coronavirus infection, however mild, please follow NHS advice to stay at home and self-isolate. Please check the NHS website for details as to how long you and your family should should stay at home, as this guidance is subject to change as the situation develops.

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.

More information is available on coronavirus here