Foreword By Charlotte Dravet
I am happy to present this booklet, The First 20 Questions on Dravet Syndrome, as I believe it is important for you, parents and families, to have a document providing easily understandable answers to the questions you have about your child’s disease.
1 . Why is it so long to have a diagnosis ?
2 . What is the cause ?
3 . Is it an inherited disease ? Is there a risk for your future children?
4 . Is it necessary to meet another doctor ?
5 . What will happen to your child during childhood ?
6 . What will happen to your child during adolescence and adulthood ?
7 . Apart from seizures, which manifestations will you and your child have to deal with ?
8 . Has vaccination caused Dravet syndrome ?
9 . Are there seizure-triggering factors in daily life ?
10 . Which types of medications are used ?
11 . Are there other treatments than medications ?
12 . How to manage fever and increase of body temperature ?
13 . How to deal with seizures ?
14 . How can you explain the situation to your family and friends ?
15 . How to manage daily life ?
16 . Which daily life specific difficulties will your child encounter ?
17 . What about kindergarten and school ?
18 . What kind of help may you need and get when your child is a teenager or an adult ?
19 . Which questions are still to be answered by medical research ?
20 . Are there any new therapeutic approaches for Dravet syndrome ?