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

Q1: Is my child with Dravet Syndrome eligible for COVID-19 vaccination?

On 19th July 2021, ministers in each of the UK’s governments (England, Scotland, Wales and Northern Ireland) announced that children aged 12 and over, who are at increased risk of serious illness from COVID, would be eligible for the Pfizer-BioNTech vaccine. This decision was based on an independent report from the Joint Committee on Vaccination and Immunisation (JCVI). You can read the statement in full here.

Those identified by the JCVI as being eligible for the vaccine include children aged 12 and over with severe neuro-disabilities, Down’s syndrome, immunosuppression and those with profound and multiple learning disabilities, severe learning disabilities, or on the GP learning disability register. Young people aged 16 to 17 years of age who are at higher risk of serious COVID-19, will also continue to be offered COVID-19 vaccination.

While Dravet Syndrome has not been specifically named in this list, the common shared symptoms and needs that are shared by people living with Dravet are applicable to the eligibility criteria. It is also important to note that Dravet Syndrome is a spectrum condition, meaning the risks from COVID-19 will vary depending on an individual’s overall health. For further guidance, we recommending talking to your GP or medical team.

Q2: What evidence is there that COVID-19 vaccinations are safe in children aged 12 and older?

The Pfizer-BioNTech COVID-19 vaccine has been authorised for use in persons aged 12 years and over in the UK. This follows a rigorous review of the safety, quality and effectiveness of the vaccine in this age group by the MHRA and the Government’s independent advisory body, the Commission on Human Medicines (CHM). 

Over 2000 children aged 12-15 years were studied as part of the randomised, placebo-controlled clinical trials. In addition to the MHRA, the data was reviewed by by the CHM’s Paediatric Medicines Expert Advisory Group who are scientific experts within this age group, as well as the CHM’s COVID-19 Vaccines Benefit Risk Expert Working Group.

No new side effects were identified and the safety data in children was comparable with that seen in young adults. As in young adults, the majority of adverse events were mild to moderate, such as a sore arm or tiredness. There were no cases of COVID-19 from 7 days after the second dose in the vaccinated group, compared with 16 cases in the placebo group. In addition, data on neutralising antibodies showed the vaccine working at the same level as seen in adults aged 16-25 years. 

You can read more about MHRA approval of the Pfizer-BioNTech for 12-15 year olds here. For more about the safety of COVID-19 vaccines, see Q4, below. 

Q3: When will the first doses of vaccine be available for 12-15 year olds?

According to NHS guidance, children should be offered a first dose vaccination before returning to school in September. Therefore, it is expected that first dose vaccinations for eligible children aged 12-15 to be operational from w/c 23rd August 2021 at the latest with invitations issued in advance.

Q4: 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, Oxford/AstraZeneca and Moderna 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. In addition, the Association of British Neurologists has issued guidance on the approved COVID-19 vaccines 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), the Oxford/AstraZeneca vaccine (found here) and the Moderna 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.

Caregiver surveys from DSUK and our friends at the Dravet Syndrome Foundation in the US have also so far provided reassurance that COVID-19 are vaccines well tolerated in people with Dravet Syndrome, as they are in the general population. 

• The DSUK study was conducted among 8 caregivers of people with Dravet Syndrome (aged 16 – 44) who had received at least one dose of a COVID vaccine. While, mild, short term side effects including fatigue, fever, pain at the injection site, aching or headache were common, vaccines did not appear to be associated with an increase in the frequency or duration of seizures,even in those who developed fever post-vaccination. Read more here.
  
• The DSF study was conducted among 120 caregivers of children/adults with Dravet Syndrome (aged 11-42) who had received at least one dose of a COVID vaccine. No side effects were reported in 55% of individuals after the first dose and 50% of individuals after the second dose. The most commonly reported symptoms were lethargy and injection site soreness. The majority (~90%) of individuals did not experience increased seizures after a dose of the vaccine. Read more here. 
  

As with any treatment, advice should be sought from your clinician. 

This statement is correct to the best of our knowledge as at 16.8.21

Q5: 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). 

Q6: 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.

Q7: 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 (updated 26.7.21).

Information for carers:

Carers should make sure they know which of their clients are on this list before your duties. If you're a carer, your organisation should have a list of all clients who are 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.

Q8: 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). 

Q9: 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.

Q10: 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 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. 

Q11: 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

Q12: 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.

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.