Children with Dravet syndrome may experience frequent seizures that occur unpredictably. It is vital for caregivers to know what to do when a seizure happens, as medical aid may not be immediately available.

Signs and symptoms of a seizure

The most obvious signs that a seizure is taking place are jerking movements or sudden stiffness of the arms and legs. Rhythmical head nodding may also happen. A sudden fall for no apparent reason may indicate loss of consciousness and the beginning of a seizure.

During an episode, the child may drool, or his or her eyes may roll back. Lips may be tinged blue, and breathing patterns may be altered. Loss of bowel and bladder control is also not uncommon during a seizure.

Sometimes a child may suddenly adopt a blank stare, with or without rapid blinking, and be briefly unresponsive to noise or words. This is known as an absence seizure.

After a seizure, the child may be sleepy and confused.

What to do during a seizure

The most important thing when a seizure occurs is not to panic and to protect the patient from injury. Sharp objects, furniture, electrical appliances, or cooking utensils should be moved out of the way. Should seizures happen near a wall, a pillow or piece of clothing should be placed near the hard surface to avoid injury. It may also help to gently loosen the clothing around the patient’s neck.

Children with Dravet syndrome often experience prolonged seizures; it is important to time the duration of the seizure as episodes lasting more than five minutes, known as status epilepticus, require immediate medical attention. Sometimes children with Dravet syndrome may be prescribed a medication known as diazepam that is inserted rectally to stop a seizure episode.

What not to do during a seizure

The movements of a child having a seizure should not be restrained, as this can inadvertently cause injury. Nothing should be placed in the patient’s mouth.

What to do after a seizure

The caregiver should stay with the child until the seizure has passed. The child should gently be laid on his or her side to prevent choking on saliva. If there was vomiting, the mouth should gently be cleared.

The child should not be given anything to eat or drink, including medication, until he or she is completely awake and alert.

If the child accidentally hit his or her head during the seizure, the caregiver should closely monitor the child for vomiting or complaints of blurred vision. If these occur, medical advice should be sought immediately. Although sleepiness after a seizure is common, children should not sleep for more than two hours, and caregivers should attempt to wake them at 20-minute intervals.

When to call an ambulance

While seizures usually stop spontaneously, an episode lasting more than five minutes warrants an ambulance call.

An ambulance should also be called if there are breathing problems, a persistent bluish tinge on the lips, tongue, or face, if patients have been unconscious for more than a few minutes after a seizure, if they have hit their head, if another seizure begins immediately after the previous one has stopped, or if they appear sick.

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Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.