About Dravet Syndrome

On this page we are going to tell you a little bit more information about Dravet Syndrome. Dravet Syndrome is a rare and devastating form of epilepsy that begins in infancy. Its cause is a genetic mutation, but what causes that mutation is unknown. It’s a fairly new illness so there isn’t much research available about it.

Only one in 20,000 children is affected by it, which means that out of 500 children with epilepsy only one is likely to have this form of epilepsy.
In addition to this the children unlucky enough to have this form of epilepsy are faced with the fact that Dravet Syndrome is one of the most resistant to epilepsy medications, some even aggravating the condition. Children with Dravet Syndrome do not outgrow this condition, they are stuck with it for life and it affects everything they do in their day to day lives.

The onset of the syndrome occurs in the first year of life with prolonged seizures lasting anywhere from 5 minutes to an hour brought on by fever or high temperatures.  As the child goes into its second year of life the seizures occur more frequently and do not require a fever to be present. Some children can have over a 100 small seizures a day (little eye flutters that are shown as seizures on EEG) on top of having major seizures 4-5 times a week. 

Due to the seizures becoming more frequent as the child gets older, their development starts to get slower, especially between the ages of two and four. This can often include regression or loss of developmental skills such as speech and language; they can even lose their ability to control movement. 

As the child gets older the seizures continue to be very difficult to control. Learning disabilities are usually severe and as it progresses most children become unsteady on their feet. This requires them to have constant care and supervision throughout their lives, which can be very draining both emotionally and financially for families who care for the affected individuals. Usually by the age of 14 or 16 years, the seizures tend to become less frequent, although there is very little evidence of this in research due to it being a recently discovered syndrome.

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