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What is Dravet Syndrome?
Dravet syndrome is a rare and severe form of epilepsy that usually begins in early childhood. In the UK, it is often first noticed in babies who have prolonged seizures, sometimes triggered by fever or illness.
The condition affects the brain’s ability to control electrical activity. As children grow, other symptoms may appear alongside the seizures, including problems with movement, speech and development.
Seizures are the Main Symptom
The most common symptom of Dravet syndrome is repeated seizures. These may be convulsive, involving shaking or stiffening of the body, and they can last longer than seizures seen in many other epilepsy types.
Seizures often start in the first year of life. They may be triggered by a high temperature, infection, hot baths or even becoming overheated.
Some children also have seizures without a clear trigger. These can happen in different forms, including tonic-clonic seizures, myoclonic jerks and focal seizures.
Other Signs to Look Out For
Children with Dravet syndrome may have delays in development. This can affect speech, learning, balance and movement, and these difficulties often become more obvious over time.
Behavioural symptoms are also common. Some children may show signs of hyperactivity, poor attention, sleep problems or autism-like features.
Walking and coordination can be affected too. A child may appear clumsy, have an unsteady gait or struggle with tasks that need fine motor control.
How Symptoms Change Over Time
Dravet syndrome usually starts with seizures in infancy, but the pattern often changes as the child gets older. Seizures may become more frequent and can happen in different forms across childhood.
Developmental and learning difficulties may become more noticeable in the preschool and school years. Some children need extra support with education, communication and daily living.
The severity of symptoms can vary from child to child. However, ongoing seizures and developmental challenges are common features of the condition.
When to Seek Medical Help
If a baby or child has a long seizure, repeated seizures, or seizures linked to fever, urgent medical assessment is needed. This is especially important if the child is under two years old.
Dravet syndrome can only be diagnosed by a specialist. If you are worried about seizure symptoms or developmental changes, speak to your GP or paediatrician as soon as possible.
Frequently Asked Questions
Common Dravet Syndrome symptoms in infants and young children include prolonged febrile seizures, frequent seizures of different types, developmental slowing, and possible movement or balance problems. Symptoms often begin in the first year of life.
Dravet Syndrome symptoms often start with a seizure during infancy, frequently triggered by fever, illness, or vaccination-related fever. The first seizure may be prolonged and may be followed by recurring seizures over time.
Dravet Syndrome symptoms can include generalized tonic-clonic seizures, myoclonic seizures, absence seizures, focal seizures, and hemiclonic seizures. A person may experience more than one seizure type over the course of the condition.
Yes, fever-triggered seizures are one of the hallmark Dravet Syndrome symptoms. Seizures may also be triggered by hot temperatures, illness, excitement, or flashing lights in some individuals.
Developmental Dravet Syndrome symptoms may include delayed speech, learning difficulties, slower cognitive development, and problems with attention or memory. These concerns often become more noticeable as the child grows.
Yes, Dravet Syndrome symptoms can include gait abnormalities, poor coordination, balance issues, and crouched walking. Some people may also develop weakness or reduced muscle tone.
Dravet Syndrome symptoms can affect behavior and may include hyperactivity, impulsivity, irritability, sleep problems, and autistic-like behaviors. Behavioral changes can vary widely from person to person.
Dravet Syndrome symptoms often change over time, and seizures may remain frequent or become harder to control. Developmental, motor, and behavioral difficulties may also become more apparent as the child ages.
Warning signs of severe Dravet Syndrome symptoms include prolonged seizures, seizures that cluster, difficulty recovering after seizures, frequent status epilepticus, or rapid developmental regression. These signs require prompt medical attention.
Yes, status epilepticus can be one of the serious Dravet Syndrome symptoms. This is a medical emergency in which a seizure lasts too long or seizures happen back-to-back without full recovery.
Yes, some children with Dravet Syndrome symptoms develop normally at first and then show developmental regression or slowing after seizures begin. Loss of previously acquired skills can occur in some cases.
Sleep problems can be part of Dravet Syndrome symptoms and may include difficulty falling asleep, frequent waking, or restless sleep. Poor sleep can also make seizures and behavior worse.
Yes, language delay is a common part of Dravet Syndrome symptoms. Children may have delayed speech development, limited vocabulary, or trouble expressing themselves clearly.
Dravet Syndrome symptoms usually do not have a single distinctive physical appearance, but some people may develop coordination problems, crouched gait, or altered posture over time. The condition is identified mainly by seizure and developmental patterns rather than appearance.
Dravet Syndrome symptoms can become more noticeable with fever, overheating, infections, excitement, stress, and sometimes bright or flashing lights. Recognizing triggers may help reduce seizure risk.
Yes, sensitivity to heat or fever is a common feature of Dravet Syndrome symptoms. Some individuals may also be affected by sudden temperature changes or overheating during exercise or warm weather.
Dravet Syndrome symptoms often involve prolonged febrile seizures in infancy, multiple seizure types, and later developmental or motor difficulties. Typical childhood seizures may not show the same pattern of persistent, varied, and treatment-resistant symptoms.
Yes, early Dravet Syndrome symptoms can be mistaken for febrile seizures, epilepsy syndromes, or other developmental disorders. The combination of recurrent prolonged seizures, fever sensitivity, and developmental concerns helps raise suspicion.
Emergency Dravet Syndrome symptoms include a seizure lasting more than a few minutes, repeated seizures without recovery, breathing difficulty, blue lips, injury, or failure to wake normally after a seizure. Emergency services should be contacted right away.
Dravet Syndrome symptoms can affect daily life through unpredictable seizures, medication side effects, learning challenges, mobility issues, and the need for constant safety planning. Support at home, school, and in medical care is often necessary.
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