Vaccinations and Dravet Syndrome

Vaccination can be a source of concern for families because fever and other side effects can trigger seizures in some people living with Dravet Syndrome. This page summarises what research tells us, what families may wish to discuss with their medical team, and where to find current NHS guidance.

• People living with Dravet Syndrome should normally receive routine vaccinations. International expert consensus recommends routine vaccinations, annual influenza vaccination and COVID-19 vaccination for those who are eligible. 
• Vaccines do not cause Dravet Syndrome. A vaccination can sometimes trigger a seizure or bring forward the first seizure in a child who already has the underlying genetic susceptibility, but it does not cause the condition. 
• Vaccination can trigger seizures in some people living with Dravet Syndrome, but most vaccinations do not result in a seizure. The likelihood and timing of a seizure vary between individuals and vaccines.
• Vaccination-associated seizure onset does not worsen the course of Dravet Syndrome. Studies have found no meaningful differences in cognitive outcome, developmental course or subsequent seizure types between children whose first seizure occurred close to vaccination and those whose first seizure was unrelated to vaccination. 
• A seizure after vaccination is not always caused by a high temperature. Fever is an important seizure trigger in Dravet Syndrome, but vaccination-associated seizures can also occur with little or no measured fever. 
• The period of closer observation depends on the vaccine. Side effects following vaccines usually occur within the first few days, while reactions to others can occur later. The medical team can advise how long closer monitoring may be appropriate.
• Most reported vaccine side effects don’t last a long time and are much milder than symptoms of diseases they protect against. These can include injection-site soreness, tiredness, fever, headache, muscle aches, chills and nausea. 
• Families should make an individualised vaccination plan with their medical team

Preparing for vaccinations in Dravet Syndrome

Planning ahead can help families feel prepared for possible side effects or changes in seizure activity.

Each person living with Dravet Syndrome is different and the management of vaccines should be tailored to them in collaboration with their medical team (paediatrician, neurologist, epilepsy nurse or GP). 

Families may want to discuss the following options with the person’s medical team, who can advise which, if any, may be appropriate:

• whether to use paracetamol or ibuprofen before or after vaccination
• how long to monitor temperature and seizures
• whether short-term ‘bridge’ antiseizure medication should be prescribed
• when to seek medical help
• whether vaccination should take place in a clinical setting where additional monitoring is available
• whether vaccines normally given at the same appointment should be spaced out.

A minor illness does not usually require vaccination to be delayed but if the person is unwell before vaccination, ask the vaccination or medical team whether it should go ahead. 

Eligibility for vaccinations

People living with Dravet Syndrome should receive vaccinations according to the routine national schedule unless their medical team identifies a specific reason not to.

Many people with Dravet Syndrome may be eligible for an annual flu vaccine because they have a chronic neurological condition or learning disability. Main carers of a disabled person are also often eligible.

COVID-19 vaccine eligibility changes over time. Dravet Syndrome alone does not currently make someone eligible under the autumn 2026 UK programme.

• NHS vaccination programmes
• Eligibility for flu vaccine 2026
• Eligibility for COVID-19 vaccination 2026

If you are concerned because you or the person living with Dravet Syndrome are not eligible for certain vaccinations based on the NHS criteria, speak with your medical team who can discuss this.

The science behind vaccinations

Vaccines contain small amounts of weakened or destroyed forms of germs or viruses that can cause harmful diseases. Vaccines use the body’s natural defence system to build protection. The immune system remembers how to respond and can act quickly if it encounters the disease-causing germ in the future.

Germs can evolve over time, so some vaccines are updated to protect against new variants. Booster doses may also be needed because protection can reduce over time.

There are different types of vaccines:

• Live vaccines: Contain weakened germs or viruses and give long-term protection. These may not be suitable for people with weakened immune systems. These may be given by nasal spray. 
• Non-live vaccines: Contain germs or viruses that have been destroyed, may require several doses or ‘boosters’, can be given to those with weakened immune systems.

Read more from the World Health Organisation or NHS websites. 

Useful resources

• The NHS has developed leaflets to provide guidance for schools and parents to support the delivery of vaccination programmes to children with special educational needs and disabilities
  • Information for SEND in mainstream schools 
  • Information for parents and carers

Further reading

These studies should be taken as indicative rather than definitive information that can be applied to everyone. 

• International consensus on diagnosis and management of Dravet Syndrome
• The impact of SARS-CoV-2 vaccination in Dravet Syndrome: A UK survey
• COVID-19 vaccine in patients with Dravet Syndrome: Observations and real-world experiences
• Vaccination and childhood epilepsies 
• A retrospective study of the relation between vaccination and occurrence of seizures in Dravet Syndrome
• Effect of vaccinations on seizure risk and disease course in Dravet Syndrome
• Effects of vaccination on onset and outcome of Dravet Syndrome: a retrospective study