COVID-19 Guidance - FAQs & Webinar Series

Looking for Dravet-specific advice on coping with COVID-19? This resource provides the answers to Frequently Asked Questions, developed in consultation with our Medical Advisory Board, chaired by Professor Helen Cross, and links to our ongoing webinar series. 

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 (Friday 6th November). However, we are mindful this is a rapidly evolving context and guidance may change as more information becomes available. 

Q1: How do I know if COVID-19 vaccines are safe for my child/adult with Dravet Syndrome?

We understand there are many questions about COVID vaccines and Dravet Syndrome. The UK government has given regulatory approval to the Pfizer/BioNTech and Oxford/AstraZeneca vaccines for COVID-19. These vaccines are now being made available to people in the UK. 

At times like this it can be difficult to know which sources of information to trust. Having sought guidance from DSUK's Medical Advisory Board, we would strongly encourage you to refer to guidance issued by the Medicines and Healthcare products Regulatory Agency (MHRA) as an authoritative source. Their guidance can be found here

All COVID vaccines in the UK are undergoing rigorous safety and efficacy testing before approval. In the guidance published by the MHRA in respect of the Pfizer/BioNTech vaccine (found here) and the Oxford/AstraZeneca vaccine (found here), Anti-Epileptic Drugs (AEDs) are not listed as being contraindicative. 

We know a concern for families living with Dravet Syndrome is the risk of fever being triggered. In the MHRA guidance on the Pfizer/BioNTech vaccine the fever risk is cited as applying to 1 in 10 people. When considering fever risks it is important to note that without a vaccine a person with Dravet Syndrome is at risk of contracting COVID and developing a COVID fever.

As with any treatment advice should be sought from your clinician. This statement is correct to the best of our knowledge as at 08.12.20

Watch our 'COVID-19 & Dravet Syndrome: Latest Updates' webinar

On Monday 11th January 2021, our leading UK experts from our Medical Advisory Board, Professors Helen Cross & Sanjay Sisodiya, presented on the latest updates re COVID-19 & Dravet Syndrome, including vaccines rollout. Click the link to view.

Watch the video

Q2: 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 (11.10.20). There is no evidence to suggest a high temperature triggered by a COVID-19 fever is worse than a high temperature caused by another reason. 

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. People who are taking a high dose of steroids are advised to take extra caution. People with learning disabilities may also be at higher risk if they have additional neuromuscular comorbidities.

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 currently classified as extremely vulnerable can be found here (see Q3 for more detail). 

Watch our 'Dravet Syndrome in the COVID-19 pandemic' webinar with Professor Helen Cross

On Monday 30th March, Professor Cross, a globally-recognised authority on Dravet Syndrome and Chair of our Medical Advisory, presented a webinar on the implications of COVID-19 for Dravet individuals.

Watch the video

Q3: Is my child or adult with Dravet Syndrome classed as 'extremely clinically vulnerable'?

Please see Q1 for information about overall risks related to COVID-19 infection for children and adults with Dravet Syndrome.  Information about who is included in the ‘clinically extremely vulnerable' list can be found here

In brief: anyone who has an annual flu jab is generally considered to belong to the ‘clinically vulnerable list'. For those eligible for a flu jab, but not classed as ‘clinically extremely vulnerable’, it is recommended that they exercise particular caution but can still attend school/day care as per government guidance.

Parents/carers of anyone who is on the ‘extremely clinically vulnerable’ should be contacted by the NHS or local authority. Most people should have received a letter by now. If you have not, it could be because your child/adult with Dravet Syndrome is no longer being classed as ‘extremely clinically vulnerable’ based on our improved understanding of COVID-19. If you believe that your child/adult is clinically extremely vulnerable due to comorbidities, speak to your GP or medical team.

Q4: Is it safe for my child/adult with Dravet Syndrome to attend school/care settings?

Overall, according to available evidence to date (26.08.20), young children with little or no significant comorbidities appear to be at little risk. However, their parents and grandparents will be at higher risk. 

Specific advice for children with Dravet Syndrome should be on a case-by-case basis. Dravet Syndrome is a spectrum condition, therefore, the extent to which each individual child/adult is at risk of COVID-19 infection will vary.

A ‘risk’ assessment needs to be based on the underlying comorbidities that an individual with DS has at the current time. For example, the presence of significant scoliosis with an impact on respiratory function and a history of frequent chest infections. A decision around whether the individual requires further shielding (and the implications of this for schooling) should be discussed by the family with the lead clinician/neurologist weighing up those risks.

For more ‘back to school’ advice, developed specifically for parents/carers of children with serious health needs, please see this helpful resource from Wellchild UK. Although this is aimed at children, many points are relevant for adults returning to residential homes or day centres. A ‘back-to-school’ webinar is also available to watch on video playback here.

Further detailed guidance for how the COVID-19 measures will affect children and young people with special educational needs and disabilities (SEND) is also available from the IPSEA website, click here.

Please note, each nation in the UK has its own detailed governmental guidance for back-to-school, with some differences in approach between nations. Click on the links for more information: ScotlandEnglandWales and Northern Ireland

Q5: Is it safe for carers to come into the home and/or for my Dravet child/adult to attend respite care?

Care at home can continue as before. Registered childcare and other childcare activities will continue if it allows parents to work or for the purposes of respite care. The Carer’s UK website sets out useful advice, if you are caring for someone who is deemed to be extremely vulnerable.

Information for carers:

Carers should make sure they know which of their clients are on this list before your duties. The government has issued guidance for residential care, supported living and home-care, which can be found here. If you're a carer, your organisation should have a list of all clients who are shielded and in the clinically extremely vulnerable group, so you do not need to make an assessment yourself. Helpful information can also be found on the Carers UK website.

Watch our 'Family Wellness During COVID-19' webinar with Neil Williamson

On 25th April 2020, Neil Williamson, who is an Epilepsy Nurse Specialist and member of the DSUK Medical Advisory Board, hosted a webinar for Dravet families, which focused on family wellness through COVID-19, with practical tips and Dravet-specific advice for coping with the virus outbreak.

Watch the video

Q6: What counts as a 'support bubble' and what are the rules for meeting with other people?

Support bubbles remain in place. This is where a household with one adult joins with another household. Households in that support bubble can still visit each other, stay overnight, and visit outdoor public places together. Parents are able to form a childcare bubble with another household for the purposes of informal childcare, where the child is 13 or under. Parents will still be able to access some registered childcare and other childcare activities (including wraparound care) where reasonably necessary to enable parents to work, or for the purposes of respite care.

You can, as an individual, meet up to 1 person from another household in an outdoor public space. The advice adds that “children under school age, as well as those dependent on round-the-clock care, such as those with severe disabilities, who are with their parents will not count towards the limit on two people meeting outside”. This means that someone from another household, for example a grandparent, can legally meet you and your child/adult in an outdoor public space. Social distancing guidelines should be followed in this scenario.

Q7: Are there any issues children/adults with Dravet Syndrome needing to wear a mask?

There should be no contraindication for individual with Dravet Syndrome to wearing a mask. Cloth face coverings should not be placed on young children younger than 2 years of age, anyone who has trouble breathing, or is unconscious, incapacitated or otherwise unable to remove the cover without assistance. 

Should a convulsive seizure occur it is advised that someone removes the mask with caution to ensure optimal airway function. 

In some cases, mask wearing may not be tolerated even in older children with Dravet Syndrome due to sensory and other issues. Parents/carers may need to be prepared to explain this in situations where mask-wearing is requested. For public transport, exemptions for the use of face coverings apply to those with certain health conditions, disabled people and children under the age of 11 (find out more here). 

PHE has produced a face coverings exemption toolkit which might be of use to parents/carers and can be found here.

Q8: My child/adult needs emergency care that I would normally go to A&E for.  Should I still go to A&E if it is not COVID-19 related?

If a child/adult with Dravet Syndrome needs A&E then they should go to A&E and not avoid or delay due to COVID-19. Hospitals are still fully open and responding to all emergency situations, despite the COVID-19 situation, so it is important to follow your normal escalation procedure.

Children or adults with complex health needs and disabilities, such as Dravet Syndrome, may have their ‘own normals’. If as a parent or carer you feel your child is sicker than they normally are, are getting worse, or they have any new symptoms, trust your instincts and seek medical advice urgently. The Royal College of Paediatrics and Child Health (RCPCH) has some helpful guidance on seeking help - click here to view.

Q9: I’ve heard that the Coronavirus Act 2020 could lead to my local council suspending its social care duties for adults with disabilities. Should I be concerned about the impact this will have regarding social care provision for my son/daughter with Dravet Syndrome?

So far, there are very few examples of local authorities taking the decision to ease social care duties for adults with disabilities, as a result of the new Coronavirus Act.

Government guidance states that a local authority should only take a decision to begin easing Care Act duties if there is no alternative. In other words, a 'tipping point’ needs to be reached, where the workforce is significantly depleted, or demand on social care increased, to an extent that it is no longer reasonably practicable for the local authority to comply with its duties or to do so would lead to urgent or acute needs going unmet, risking life.

If you are concerned about any changes, do speak to your social care team. Any decision to reduce or suspend care cannot be made without approval by the Director of Social Services and Department of Health, and it must be reviewed every two weeks.

For more insights from Fiona Scolding, a leading family lawyer, please do check out our ‘Focus on Adults’ webinar; the relevant section starts at around 44 minutes into the webinar: https://bit.ly/DSadults. A more detailed presentation on the Coronavirus Act and its impact on adult social care is also available. Click here to view: https://bit.ly/DSCareAct

Watch our webinar - 'COVID-19: Focus on Adults with Dravet Syndrome'

On Saturday 25th April, Professor Sanjay Sisodiya, an adult neurologist, and Fiona QC, a leading family lawyer, jointly presented a webinar focused on meeting the medical needs and safeguarding the rights of Dravet adults.

Watch the video

Q10: 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: 

Q11: Is it safe to give ibuprofen or other NSAIDs to people with Dravet Syndrome and COVID-19?

Ibuprofen, naproxen sodium and other non-steroidal anti-inflammatory drugs (NSAIDs) can relieve pain and fever; they also reduce inflammation. Another drug, paracetamol (also known as acetaminophen), controls pain and fever but does not affect inflammation. Although there have been concerns circulating about a risk of more severe infection with nonsteroidal anti-inflammatory drugs there is no definitive evidence to support this.

If your chid/adult has a fever or body aches, you can take one of these drugs for relief, as long as you follow the dose instructions.

Q12: 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 (06.11.20): “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:

For more information about the impact of coronavirus on people with epilepsy and their families, visit the ILAE (International League Against Epilepsy) COVID-19 resources.

Please check here 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. 

Are you a Healthcare Professional looking for information on Dravet Syndrome?

Visit our healthcare professional section for more resources, including information on common drug-drug interactions for Dravet Syndrome and COVID-19.

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