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What You Need To Know About Dravet Syndrome

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Epilepsy is the 4th most common neurological disorder in the United States. With children, around 400,000 have epilepsy and most are able to control their seizures and lead normal lives. Dravet Syndrome is a rare form, of epilepsy found in children. Symptoms include, developmental delays, sleeping conditions, and chronic infections. Here are 20 facts you shoud know about Davet Syndrome.

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  • Charlotte Dravet first described severe myoclonic epilepsy of infancy in France, 1978.
  • The name was later changed in 1989.
  • It is also called Severe Myoclonic Epilepsy of Infancy (SMEI)
  • It is a rare genetic disorder affecting 1 in every 20,000-40,000 children
  • It appears during the first year of life.
  • Developmental disabilities and abnormal EEG’s are often not evident until the second of third year of life.
  • Seizures are often fever-related.
  • It is rare to develop beyond the age of 5.
  • Children often experience poor development of language and motor skills
  • Is caused by defects in a gene in 79% of cases.
  • Affects 2-5% of children in North America
  • It is induced by prolonged exposure to warm weather
  • It is associated with sleep disorder including insomnia
  • Seizures are frequently resistant to treatment
  • There is a higher risk of Sudden Unexplained Death in Epilepsy (SUDEP) (15-20%)
  • The onset of signs and symptoms is around 6 months old
  • Children diagnosed with Dravet Syndrome have a 85% chance of survival.
  • Development is typically normal.
  • Episodes may be frequent and prolonged
  • Certain seizure medications are likely to worsen the seizures such as Dilantin, Cerebyx and Tegretol.

Resources

Dravet Syndrome Foundation
P.O. Box 16536
West Haven, CT
Tel. 203-392-1950

Dravet Syndrome UK
P.O. Box 756
Chesterfield
5439EB
Tel. 07874 866937

Epilepsy Foundation- Provides online resources on information about epilepsy and seizures, locating assistance, advocacy and public awareness.

ICE Epilepsy Alliance– Provides resources on refractory patients (anti-epileptic drug therapy which is ineffective). Site includes information on advocacy, childhood epilepsy, and Dravet syndrome.

NINDS Dravet Syndrome Information Page– Medical information page on Dravet syndrome, diagnosis, treatment, research and organizations.

WebMD– Medical website providing information on diagnosis, signs and symptoms, and treatment.

Benign Roladric Epilepsy

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Benign Rolandic Epilepsy

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What is Benign Rolandic Epilepsy?

Benign Rolandic Epilepsy is a type of seizure that affects primary children. It is referred to as “Benign” since most children grow out of it during puberty and “Rolandic” describes the part of the brain where seizures begin.

Other know names:

  • benign focal epilepsy
  • benign childhood epilepsy with centrotemporal spikes (BCECETS)
  • benign rolandic epilepsy of childhood (BREC)
  • benign epilepsy with centro-temporal spikes (BECTS)

How Common is Benign Rolandic Epilepsy?

Benign Rolandic Epilepsy (BRE) is considered one of the most common types of epilepsy children will experience. It generally begins between the ages of 3 and 13 and peaks around the age of 7-8 and will stop around the ages of 14-18 (puberty). Children usually do well with this type of seizure although some may experience learning disability including reading, language and drawing.

Symptoms

  • A feeling of tingling on one side of the mouth which involves the tongue, lips, gums and inner side of cheek.
  • Generally begins when the child is sleeping or wakes up in the morning characterized by occurring in clusters and long intervals with no seizure activity.
  • twitching movements on one side of the face.
  • May make gurgling sounds.
  • Drooling and the inability to speak.
  • Day time seizures may be infrequent and typically last less than 2 minutes.
  • May spread from the rolandric area to the rest of the brain which becomes a tonic-clonic  seizures.

Diagnosis

Diagnosis are done through an accurate history of the seizures and an electroencephalogram (EEG) test, which picks up seizure activity.

Treatment

In most cases, children may not take any medication since the seizures end around puberty. May be treated with anti-epileptic drugs including:

  • Carbamazepine
  • Levetiracetam
  • Oxcarbazepine

How professionals can help

  • Recognize the signs of seizures
  • Teachers should be aware that a child may often feel tired and sleepy afterwards for hours
  • There may be learning difficulties and behavior problems

 

 

Updated 2/21/24

 

 

November is Epilepsy Month!

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