About Dravet syndrome

Dravet syndrome, which used to be known as severe myoclonic epilepsy of infancy (SMEI) is a rare form of epilepsy which can be difficult to treat.1

For a very small number of babies, usually when they are between the ages of five and eight months, a seizure can be the first symptom of Dravet syndrome.1 A seizure is a burst of electrical activity in the brain which temporarily changes how it works.2

This seizure may be seen when the child has a high temperature, perhaps after a warm bath, or because of illness or vaccination. Other triggers can include flashing lights, visual patterns, eating and over-exertion. These triggers can also cause subsequent seizures.3

In the early stage of Dravet syndrome the seizures that a child experiences will be of a type that makes them shake or jerk and lose consciousness (tonic-clonic seizures).1-4

As they get a little older, children with Dravet syndrome may also have seizures that cause them to have brief muscle jerks (myoclonic seizures), go floppy or fall over (atonic seizures), or appear to be daydreaming and be unresponsive to you (absence seizures). They are also at risk of a prolonged seizure called status epilepticus. This type of seizure is a medical emergency and can be fatal if left untreated.1-3

Children with Dravet syndrome are likely to have some delays in development, for example with speech and movement, and most will be considered to have learning difficulties as they get older. They may also have muscle weakness and a crouched gait.3

From the age of 3-4 onwards, learning difficulties may become more apparent, along with behavioural difficulties, coordination difficulties and impaired dexterity.3

Older children and young adolescents with Dravet syndrome are less likely to experience status epilepticus and are also less likely to experience the types of seizures where they may appear less alert.5

Dravet syndrome can only be diagnosed by a specialist healthcare professional, usually with the help of a genetic test. About 70-80% of patients with Dravet syndrome have a mutation in the SCN1A gene.6

SCN1A, Sodium Voltage-Gated Channel Alpha Subunit 1.

View references

  1. Dravet C. The core Dravet syndrome phenotype. Epilepsia. 2011;52(Suppl. 2):3–9.
  2. NHS. Epilepsy - Symptoms. https://www.nhs.uk/conditions/epilepsy/symptoms/. Updated September 2020. Accessed December 2020.
  3. Wirrell EC, Laux L, Donner E, et al. Optimizing the Diagnosis and Management of Dravet Syndrome: Recommendations From a North American Consensus Panel. Pediatric Neurology. 2017;68:18-34.
  4. Lagae L, Brambilla I, Mingorance A, Gibson E, Battersby A. Dev Med & Child Neurol. 2018; 60(1):63-72.
  5. Panayiotopoulos CP. Hemiclonic seizures. MedLink Neurology. https://www.medlink.com/article/hemiclonic_seizures. Updated March 2020. Accessed December 2020.
  6. Panayiotopoulos CP. Dravet Syndrome. MedLink Neurology. https://www.medlink.com/article/hemiclonic_seizures. Updated March 2020. Accessed December 2020.
This website is intended for patients in Europe who have been prescribed Fintepla and their caregivers

This medicine is subject to additional monitoring. This will allow quick identification of new safety information. You can help by reporting any side effects you or the person you care for may experience. See the What to look out for section for how to report side effects.

Fintepla is a medicine which is prescribed to treat the seizures that patients with Dravet syndrome can experience. Fintepla is used with other drugs to treat seizures in Dravet syndrome patients aged 2 years of age and older.

Dravet syndrome is a rare form of epilepsy which usually starts when a child is less than 1 year old. Patients who suffer from it often have very frequent and severe seizures. You can learn more about Dravet syndrome here.