Medical Conditions

Dravet Syndrome in Babies

Medically reviewed by Dr. Michael Okonkwo, MD, FAAP · Board-Certified Neonatologist

Content reviewed against published NIH, AAP, Dravet Syndrome Foundation guidelines

Editorial policy

Last reviewed:

If your baby has been diagnosed with or you suspect dravet syndrome in babies, here is what the evidence says.

The short answer

Dravet syndrome is a severe, lifelong form of epilepsy that typically begins in the first year of life, most commonly between 5-8 months of age. It affects approximately 1 in 15,700 births. The first seizure is often a prolonged febrile seizure (lasting more than 5 minutes) triggered by fever or warm baths. About 80% of cases are caused by mutations in the SCN1A gene. Initial development is often normal, but developmental plateau or regression occurs in the second year of life. Early accurate diagnosis is critical because certain common anti-seizure medications (such as sodium channel blockers) can worsen seizures in Dravet syndrome.

Key takeaways

  • Dravet syndrome is a severe, lifelong form of epilepsy that typically begins in the first year of life, most commonly between 5-8 months of age. It affects approximately 1 in 15,700 births. The first seizure is often a prolonged febrile seizure (lasting more than 5 minutes) triggered by fever or warm baths. About 80% of cases are caused by mutations in the SCN1A gene. Initial development is often normal, but developmental plateau or regression occurs in the second year of life. Early accurate diagnosis is critical because certain common anti-seizure medications (such as sodium channel blockers) can worsen seizures in Dravet syndrome.
  • Usually normal when: Your baby had a single brief febrile seizure lasting less than 5 minutes with no recurrence — simple febrile seizures are common and benign
  • Call your doctor if: Your baby is having a seizure lasting more than 5 minutes — call 911, administer rescue medication if prescribed, and do not wait for it to stop on its own
  • Varies by age — see the age-by-age breakdown below
“Fever itself is not an illness — rather, it is a sign or symptom that the body is fighting an infection. Fever stimulates certain defenses, such as the white blood cells, which attack and destroy invading bacteria.”
— Fever and Your Child, American Academy of Pediatrics (AAP)

This is one of the most common questions parents ask. Searching for answers means you care.

What Parents Should Know

According to NIH, AAP, Dravet Syndrome Foundation guidelines, dravet syndrome is a severe, lifelong form of epilepsy that typically begins in the first year of life, most commonly between 5-8 months of age. It affects approximately 1 in 15,700 births. The first seizure is often a prolonged febrile seizure (lasting more than 5 minutes) triggered by fever or warm baths. About 80% of cases are caused by mutations in the SCN1A gene. Initial development is often normal, but developmental plateau or regression occurs in the second year of life. Early accurate diagnosis is critical because certain common anti-seizure medications (such as sodium channel blockers) can worsen seizures in Dravet syndrome. At 0-6 months, before the first seizure, babies with Dravet syndrome appear to develop normally. There are typically no clinical signs in the first few months of life. Some parents retrospectively note subtle signs such as being jittery or startling easily, but these are nonspecific. Genetic testing for SCN1A can be performed if there is a family history, but in most cases the diagnosis is not considered until the first seizure occurs. It is generally considered normal when your baby had a single brief febrile seizure lasting less than 5 minutes with no recurrence — simple febrile seizures are common and benign. However, you should contact your pediatrician promptly if your baby is having a seizure lasting more than 5 minutes — call 911, administer rescue medication if prescribed, and do not wait for it to stop on its own.

Sources: [1], [2], [3]

Normal vs. Concerning

Usually Normal
Worth Discussing
Your baby had a single brief febrile seizure lasting less than 5 minutes with no recurrence — simple febrile seizures are common and benign
Your baby is having a seizure lasting more than 5 minutes — call 911, administer rescue medication if prescribed, and do not wait for it to stop on its own
Your baby has a known febrile seizure history with no seizures between fevers and normal development
Your baby has multiple seizures in one day or a seizure followed by unusual drowsiness, difficulty breathing, or unresponsiveness
Genetic testing for SCN1A was performed and returned negative, and your child's seizure pattern does not fit Dravet syndrome
Your child with Dravet syndrome has been started on or is taking carbamazepine, oxcarbazepine, phenytoin, or lamotrigine — these medications can worsen Dravet syndrome and should be discussed with your neurologist urgently

When to Seek Immediate Care

  • Your baby is having a seizure lasting more than 5 minutes — call 911, administer rescue medication if prescribed, and do not wait for it to stop on its own
  • Your baby has multiple seizures in one day or a seizure followed by unusual drowsiness, difficulty breathing, or unresponsiveness
  • Your child with Dravet syndrome has been started on or is taking carbamazepine, oxcarbazepine, phenytoin, or lamotrigine — these medications can worsen Dravet syndrome and should be discussed with your neurologist urgently

By Age

What to expect by age

0-6 months

Before the first seizure, babies with Dravet syndrome appear to develop normally. There are typically no clinical signs in the first few months of life. Some parents retrospectively note subtle signs such as being jittery or startling easily, but these are nonspecific. Genetic testing for SCN1A can be performed if there is a family history, but in most cases the diagnosis is not considered until the first seizure occurs.

5-12 months

This is the typical onset period. The first seizure is characteristically a prolonged, often hemiclonic (one-sided) febrile seizure — longer than 5 minutes and sometimes lasting 30 minutes or more, requiring emergency treatment. Seizures may also be triggered by warm baths, overheating, or vaccinations (though vaccines do not cause Dravet syndrome — they may trigger the first seizure in a child who already has the genetic mutation). After the first seizure, additional prolonged or hemiclonic seizures follow, initially often with fever. Between seizures, the baby may appear normal.

1-3 years

During the second year, seizures typically become more frequent and varied, including myoclonic seizures (brief jerking), absence seizures (staring spells), focal seizures, and atypical febrile seizures. Seizures may now occur without fever. Developmental progress plateaus or regresses — previously learned skills may be lost or new skills develop more slowly. Ataxia (unsteady walking) becomes apparent. A characteristic crouched gait is often noted. SCN1A genetic testing is the standard for confirming diagnosis. Avoidance of sodium channel blocking anti-seizure medications (carbamazepine, oxcarbazepine, phenytoin, lamotrigine) is critical, as these can worsen seizures.

3+ years

Epilepsy management is lifelong and typically requires multiple medications. First-line treatments include valproate, clobazam, and stiripentol. Fenfluramine (Fintepla) and cannabidiol (Epidiolex) are FDA-approved specifically for Dravet syndrome. Despite treatment, seizures are often difficult to fully control. Intellectual disability of varying degrees is common. SUDEP (sudden unexpected death in epilepsy) is a significant risk, making seizure control and nighttime monitoring important. Multidisciplinary care, including neurology, developmental pediatrics, and behavioral support, helps optimize quality of life.

What to Tell Your Pediatrician

  • Describe when you first noticed dravet syndrome in babies and how it has changed over time.
  • Note your baby's current age and which age-specific patterns you are seeing.
  • Mention if your baby had a prolonged febrile seizure lasting more than 5 minutes or affecting only one side of the body.
  • Mention if your baby is having recurrent seizures with fever, especially if they are prolonged or one-sided.
  • Let your doctor know if you have noticed any related concerns, such as changes in feeding, sleep, or movement patterns.
  • Bring a list of any questions or observations you want to discuss at the appointment.

What Should You Do?

When to take action

Probably normal when...
  • Your baby had a single brief febrile seizure lasting less than 5 minutes with no recurrence — simple febrile seizures are common and benign
  • Your baby has a known febrile seizure history with no seizures between fevers and normal development
  • Genetic testing for SCN1A was performed and returned negative, and your child's seizure pattern does not fit Dravet syndrome
Mention at your next visit when...
  • Your baby had a prolonged febrile seizure lasting more than 5 minutes or affecting only one side of the body
  • Your baby is having recurrent seizures with fever, especially if they are prolonged or one-sided
  • Your child who was developing normally is now losing skills or failing to progress as expected, especially if seizures are also present
  • Your baby had a seizure triggered by a warm bath, overheating, or mild illness
Act now when...
  • Your baby is having a seizure lasting more than 5 minutes — call 911, administer rescue medication if prescribed, and do not wait for it to stop on its own
  • Your baby has multiple seizures in one day or a seizure followed by unusual drowsiness, difficulty breathing, or unresponsiveness
  • Your child with Dravet syndrome has been started on or is taking carbamazepine, oxcarbazepine, phenytoin, or lamotrigine — these medications can worsen Dravet syndrome and should be discussed with your neurologist urgently

What You Can Do at Home

  • Keep track of when you notice dravet syndrome in babies — noting the time of day, duration, and any triggers can help your pediatrician.
  • Remember that your baby had a single brief febrile seizure lasting less than 5 minutes with no recurrence — simple febrile seizures are common and benign — this is generally within the range of normal.
  • At 0-6 months, focus on observation rather than intervention unless your pediatrician advises otherwise.
  • Follow any care instructions from your pediatrician. Keep a written log of symptoms to bring to appointments.
  • While monitoring at home, seek immediate care if your baby is having a seizure lasting more than 5 minutes — call 911, administer rescue medication if prescribed, and do not wait for it to stop on its own.

My Baby Had a Febrile Seizure

Febrile seizures are frightening to witness but are usually harmless. They affect about 1 in 25 children, typically between 6 months and 5 years, and almost never cause lasting harm. Most children who have one febrile seizure never have another, and they don't increase the risk of epilepsy significantly.

Early Signs of Epilepsy in Babies

Seizures in babies can look very different from seizures in older children or adults. Subtle signs may include repeated eye blinking or deviation, lip smacking, cycling leg movements, brief stiffening episodes, or clusters of head drops (infantile spasms). Infantile spasms are a neurological emergency that requires urgent evaluation. Not all unusual movements are seizures - babies commonly have benign tremors and startle reflexes - but any movement pattern that seems involuntary, repetitive, and cannot be interrupted deserves medical evaluation.

Types of Seizures in Babies and What They Look Like

Seizures in babies can look very different from seizures in adults. Types include subtle seizures (eye deviation, lip smacking, bicycling movements), tonic seizures (stiffening), clonic seizures (rhythmic jerking), myoclonic seizures (quick jerks), and infantile spasms (clusters of brief body flexion). Any suspected seizure in a baby needs medical evaluation. Video-recording the episode on your phone is extremely helpful for your doctor to determine if it was truly a seizure.

My Baby Lost Skills They Previously Had

Temporary regression in skills can be normal during periods of rapid growth, illness, stress, or when a baby is intensely focused on developing a new skill. However, true developmental regression - the sustained loss of previously acquired skills such as words, social engagement, or motor abilities - is always a reason to seek prompt medical evaluation. This is especially concerning if multiple skill areas are affected simultaneously.

Triage

Fever Decision Tree

Step-by-step guidance for evaluating your baby's fever by age and temperature.

Milestone

Month-by-Month Development

Detailed monthly development guides from birth through 24 months.

Guide

When to Call the Doctor

General guide on when to call the pediatrician, visit urgent care, or go to the ER.

Frequently asked questions

Is dravet syndrome in babies normal?
Dravet syndrome is a severe, lifelong form of epilepsy that typically begins in the first year of life, most commonly between 5-8 months of age. It affects approximately 1 in 15,700 births. The first seizure is often a prolonged febrile seizure (lasting more than 5 minutes) triggered by fever or warm baths. About 80% of cases are caused by mutations in the SCN1A gene. Initial development is often normal, but developmental plateau or regression occurs in the second year of life. Early accurate diagnosis is critical because certain common anti-seizure medications (such as sodium channel blockers) can worsen seizures in Dravet syndrome.
When should I call the doctor about dravet syndrome in babies?
Your baby is having a seizure lasting more than 5 minutes — call 911, administer rescue medication if prescribed, and do not wait for it to stop on its own Your baby has multiple seizures in one day or a seizure followed by unusual drowsiness, difficulty breathing, or unresponsiveness Your child with Dravet syndrome has been started on or is taking carbamazepine, oxcarbazepine, phenytoin, or lamotrigine — these medications can worsen Dravet syndrome and should be discussed with your neurologist urgently
When is dravet syndrome in babies normal?
Your baby had a single brief febrile seizure lasting less than 5 minutes with no recurrence — simple febrile seizures are common and benign Your baby has a known febrile seizure history with no seizures between fevers and normal development Genetic testing for SCN1A was performed and returned negative, and your child's seizure pattern does not fit Dravet syndrome
What causes dravet syndrome in babies?
Dravet syndrome is a severe, lifelong form of epilepsy that typically begins in the first year of life, most commonly between 5-8 months of age. It affects approximately 1 in 15,700 births. The first seizure is often a prolonged febrile seizure (lasting more than 5 minutes) triggered by fever or warm baths. About 80% of cases are caused by mutations in the SCN1A gene. Initial development is often normal, but developmental plateau or regression occurs in the second year of life. Early accurate diagnosis is critical because certain common anti-seizure medications (such as sodium channel blockers) can worsen seizures in Dravet syndrome. Common explanations include: Your baby had a single brief febrile seizure lasting less than 5 minutes with no recurrence — simple febrile seizures are common and benign. Your baby has a known febrile seizure history with no seizures between fevers and normal development.
What should I mention to my pediatrician about dravet syndrome in babies?
You should mention dravet syndrome in babies at your next visit if: Your baby had a prolonged febrile seizure lasting more than 5 minutes or affecting only one side of the body. Your baby is having recurrent seizures with fever, especially if they are prolonged or one-sided. Your child who was developing normally is now losing skills or failing to progress as expected, especially if seizures are also present.
Is dravet syndrome in babies normal at 0-6 months?
Before the first seizure, babies with Dravet syndrome appear to develop normally. There are typically no clinical signs in the first few months of life. Some parents retrospectively note subtle signs such as being jittery or startling easily, but these are nonspecific. Genetic testing for SCN1A can be performed if there is a family history, but in most cases the diagnosis is not considered until the first seizure occurs.
Is dravet syndrome in babies normal at 5-12 months?
This is the typical onset period. The first seizure is characteristically a prolonged, often hemiclonic (one-sided) febrile seizure — longer than 5 minutes and sometimes lasting 30 minutes or more, requiring emergency treatment. Seizures may also be triggered by warm baths, overheating, or vaccinations (though vaccines do not cause Dravet syndrome — they may trigger the first seizure in a child who already has the genetic mutation). After the first seizure, additional prolonged or hemiclonic seizures follow, initially often with fever. Between seizures, the baby may appear normal.
Should I go to the ER for dravet syndrome in babies?
Seek emergency care if your baby is having a seizure lasting more than 5 minutes — call 911, administer rescue medication if prescribed, and do not wait for it to stop on its own, or if your baby has multiple seizures in one day or a seizure followed by unusual drowsiness, difficulty breathing, or unresponsiveness. When in doubt, call your pediatrician's after-hours line for guidance.
Does dravet syndrome in babies go away on its own?
In many cases, dravet syndrome in babies resolves on its own, especially when your baby had a single brief febrile seizure lasting less than 5 minutes with no recurrence — simple febrile seizures are common and benign. By 3+ years, epilepsy management is lifelong and typically requires multiple medications. First-line treatments include valproate, clobazam, and stiripentol. Fenfluramine (Fintepla) and cannabidiol (Epidiolex) are FDA-approved specifically for Dravet syndrome. Despite treatment, seizures are often difficult to fully control. Intellectual disability of varying degrees is common. SUDEP (sudden unexpected death in epilepsy) is a significant risk, making seizure control and nighttime monitoring important. Multidisciplinary care, including neurology, developmental pediatrics, and behavioral support, helps optimize quality of life.
NIHAAPDRAVET SYNDROME FOUNDATION

References

  1. [1]National Institute of Neurological Disorders and Stroke. Dravet Syndrome. NINDS, 2023. NIH
  2. [2]Wirrell EC, Laux L, Donner E, et al. Optimizing the Diagnosis and Management of Dravet Syndrome. Pediatric Neurology. 2017;68:18-25. AAP
  3. [3]Dravet Syndrome Foundation. What is Dravet Syndrome? DSF, 2024. Dravet Syndrome Foundation

Doctor Visit Checklist

Bring this checklist to your next pediatrician visit to discuss Dravet Syndrome in Babies.

Things to mention

  • Describe when you first noticed dravet syndrome in babies and how it has changed over time.
  • Note your baby's current age and which age-specific patterns you are seeing.
  • Mention if your baby had a prolonged febrile seizure lasting more than 5 minutes or affecting only one side of the body.
  • Mention if your baby is having recurrent seizures with fever, especially if they are prolonged or one-sided.
  • Let your doctor know if you have noticed any related concerns, such as changes in feeding, sleep, or movement patterns.
  • Bring a list of any questions or observations you want to discuss at the appointment.

Observations to share

  • Your baby had a prolonged febrile seizure lasting more than 5 minutes or affecting only one side of the body
  • Your baby is having recurrent seizures with fever, especially if they are prolonged or one-sided
  • Your child who was developing normally is now losing skills or failing to progress as expected, especially if seizures are also present

Urgent signs to report immediately

  • Your baby is having a seizure lasting more than 5 minutes — call 911, administer rescue medication if prescribed, and do not wait for it to stop on its own
  • Your baby has multiple seizures in one day or a seizure followed by unusual drowsiness, difficulty breathing, or unresponsiveness
  • Your child with Dravet syndrome has been started on or is taking carbamazepine, oxcarbazepine, phenytoin, or lamotrigine — these medications can worsen Dravet syndrome and should be discussed with your neurologist urgently

My notes

From ismybabyalright.com — free, evidence-based baby health guides

All content follows our editorial policy and is reviewed against published clinical guidelines.

2,705 evidence-based guides6 authoritative medical sources5 medical advisory board members

Related Resources

Fever TriageWell-Baby Visit PrepMedicine Dosage CalculatorBaby Sign Language GuideEmergency ContactsBaby Tracker

Bottom line

Most cases of dravet syndrome in babies are normal. Talk to your pediatrician if your baby is having a seizure lasting more than 5 minutes — call 911, administer rescue medication if prescribed, and do not wait for it to stop on its own.

Trust your instincts. If something feels wrong, reach out to your pediatrician. Worrying about your baby means you care — that is a good thing.

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Related Medical Concerns

My Baby Had a Febrile Seizure

Febrile seizures are frightening to witness but are usually harmless. They affect about 1 in 25 children, typically between 6 months and 5 years, and almost never cause lasting harm. Most children who have one febrile seizure never have another, and they don't increase the risk of epilepsy significantly.

Early Signs of Epilepsy in Babies

Seizures in babies can look very different from seizures in older children or adults. Subtle signs may include repeated eye blinking or deviation, lip smacking, cycling leg movements, brief stiffening episodes, or clusters of head drops (infantile spasms). Infantile spasms are a neurological emergency that requires urgent evaluation. Not all unusual movements are seizures - babies commonly have benign tremors and startle reflexes - but any movement pattern that seems involuntary, repetitive, and cannot be interrupted deserves medical evaluation.

Types of Seizures in Babies and What They Look Like

Seizures in babies can look very different from seizures in adults. Types include subtle seizures (eye deviation, lip smacking, bicycling movements), tonic seizures (stiffening), clonic seizures (rhythmic jerking), myoclonic seizures (quick jerks), and infantile spasms (clusters of brief body flexion). Any suspected seizure in a baby needs medical evaluation. Video-recording the episode on your phone is extremely helpful for your doctor to determine if it was truly a seizure.

My Baby Lost Skills They Previously Had

Temporary regression in skills can be normal during periods of rapid growth, illness, stress, or when a baby is intensely focused on developing a new skill. However, true developmental regression - the sustained loss of previously acquired skills such as words, social engagement, or motor abilities - is always a reason to seek prompt medical evaluation. This is especially concerning if multiple skill areas are affected simultaneously.

Infantile Spasms (West Syndrome)

Infantile spasms (West syndrome) are a serious type of epilepsy that typically begins between 3-12 months of age, affecting about 1 in 2,000 to 4,000 babies. Spasms often appear as sudden, brief stiffening or jerking movements that occur in clusters, especially upon waking. Rapid diagnosis and treatment (typically within days) are critical, as early treatment with ACTH or vigabatrin significantly improves developmental outcomes. If you suspect infantile spasms, seek medical evaluation immediately.

My Baby's Head Shape Looks Abnormal

Many babies develop temporary head shape irregularities that are completely normal. A cone-shaped head from vaginal delivery reshapes within days. Mild positional flattening (plagiocephaly) from sleeping on the back is very common and usually improves with repositioning and tummy time. However, head shape changes involving ridges, a persistently bulging fontanelle, or rapid head growth changes should be evaluated to rule out craniosynostosis.