• How is Dravet diagnosed?
• My child is SCN1A negative, does that mean that they do not have Dravet?
• Does early diagnosis help?
• Can a child with Dravet syndrome not experience their first seizure until after the age of 12 months?
• What is the life expectancy for a child with Dravet syndrome?
• When should we have our first IEP (Individual Educational Plan) meeting?
• How do I find resources?
• What therapies should my child have?
• How do I meet other Dravet families in my area?
• How can I get more information about Dravet?

Q: How is Dravet diagnosed?

A: Dravet can be diagnosed clinically, where the doctor looks at the child’s history, family history, EEG, seizure and developmental history. The SCN1A test can also be helpful in diagnosing Dravet.

Q: My child is SCN1A negative, does that mean that they do not have Dravet ?

A: A negative SCN1A test does not rule out a Dravet Spectrum Disorder.

Q: Does early diagnosis help?

A: Yes, it will help the parents to work with the doctors in creating a better plan of care for their child. As certain medicines can increase seizure activity, early diagnosis will help prevent those medicines from being prescribed.

Q: Can a child with Dravet syndrome not experience their first seizure until after the age of 12 months?

A: Yes, but it is relatively rare for this to happen.

Q: What is the life expectancy for a child with Dravet syndrome?

A: According to the NIH Office of Rare Diseases Research, the long-term prognosis and life expectancy for children with Dravet syndrome is not well understood. Current research suggests that intellectual impairment is correlated with the frequency of seizures, and that the decline in cognitive function tends to stabilize after the child is 4 years old. According to NIH, "[a]n individual with Dravet syndrome has an 85 percent chance of surviving into adulthood."

Q: When should we have our first IEP (Individual Educational Plan) meeting?

A: A child with special medical needs should have an IEP as soon they enroll in school.

Q: How do I find resources?

A: Many of the resources need, you can find on our website, www.dravet.org. Another site to look for resources is www.hopeforsupport.com.

Q: What therapies should my child have?

A: Many children with Dravet have Speech, Occupational and Physical therapy. It is best to check with your doctor to determine what therapy or therapies would best benefit your child.

Q: How do I meet other Dravet families in my area?

A: The best place to meet other Dravet families is on our family forum. You may also contact Dravet.org directly to be put in touch with a family in your area.

Q: How can I get more information about Dravet?

A: Contact Dravet.org at 866-828-1843