Monday, December 3, 2007


In doing research I found a study done on how parents cope with the stress of have a child with Dravet's. The article was written on the study was titled "Coping with Dravet syndrome: parental experiences with a catastrophic epilepsy." Within the article the authors section off the progression of Dravet's into three stages:

Stage 1: Stress in parents is extremely high due to lack of knowledge and there is very little seizure control

Stage 2: Seizure control improves very little but other problems such as behavioral issues surface. This leads to stress on most relationships that the parents maintain.

Stage 3: Behavioral, cognition problems, etc. continue to increase but seizure control greatly improves. Stress begins to deteriorate social relationships that parents have with others.

This was an interesting article for many reasons, with one being that the study highlighted the ability for the children to communicate in its questionnaire. Below is a reproduction of part of the chart found within the study:

------------------------TOTAL--------STAGE 2--------STAGE 3
Up to full sentences-------6---------------5----------------1
Up to short sentences-----6---------------1----------------5
Up to single words--------7--------------- 4----------------3
Up to gestures-------------3----------------0----------------3
No communication--------2---------------0----------------2

Information for this post was retrieved from the article "Coping with Dravet syndrome: parental experiences with a catastrophic epilepsy" by Kathleen J Nolan, Carol S Camfield, and Peter R Camfield and can be found at:

1 comment:

market operator said...

Hi Anna,

Hopefully your still around? My sister was recently diagnosed with Dravet's Syndrome and I came across your blogsite in my research. I would really like to view the research paper on Dealing with Dravet's however the link needs a username and password. Do you have a copy of this paper?

Thanks for any assistance you can provide!