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.
A: A negative SCN1A test does not rule out a Dravet Spectrum Disorder.
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.
A: Yes, but it is relatively rare for this to happen.
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."
A: A child with special medical needs should have an IEP as soon they enroll in school.
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.
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.
A: Contact Dravet.org at 866-828-1843
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