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The Efficacy of Ketogenic Diet in 60 Chinese Patients With Dravet Syndrome

By |2019-07-15T23:17:09-05:00July 13th, 2019|Categories: DSF Research Review|Tags: , , |

This was a retrospective study, gathering information on Dravet patients who, over the last nine years, had followed a strict ketogenic diet for at least 12 weeks. In total, there were 60 children identified. The duration of their ketogenic diets ranged from 12 weeks to 54 months, with a median duration of 44 weeks. [...]

Time of Day and a ketogenic diet Influence Susceptibility to SUDEP in Scn1aR1407X/+ Mice

By |2019-05-09T14:50:11-05:00May 9th, 2019|Categories: DSF Research Review|Tags: , , , , , , , |

This article brought forth some interesting observations.  First, a major caveat - this study was done in mice.  Mice with a relevant mutation in the Scn1a gene have proven to be a useful model of Dravet, but one must never directly extrapolate any results to humans.  Dividing the day into three 8-hour periods, it [...]

GAPDH-mediated posttranscriptional regulations of sodium channel SCN1A and SCN3a genes under seizure and ketogenic diet conditions

By |2016-11-17T22:10:19-05:00November 17th, 2016|Categories: DSF Research Review|Tags: , |

(Lin, et. al. 2016). As the SCN1A gene is read in the nucleus of the cell, a transcript is created that travels outside of the nucleus and is eventually translated into the protein that becomes the sodium ion channel. Several factors can affect how quickly or efficiently the transcript is read. The authors found that [...]

2021 Day of Dravet – Featuring Experts from Our Community!

By |2021-09-16T12:12:29-05:00September 17th, 2021|Categories: Decoding Dravet Blog|

As mentioned in last week’s blog post we are very excited for this year’s Day of Dravet workshops which will consist of 5 sessions focused on topics important to caregivers. There will be a session held each Saturday of October, running from 12-3pm ET. We are excited to be pulling in many experts from our [...]

Surgery & Procedures

By |2021-09-15T09:44:22-05:00September 16th, 2021|Categories: Research / Treatments|

Surgery & Procedures in Dravet Syndrome Patients with Dravet syndrome often require a surgery or other invasive procedure at some point in their life. While there are no specific surgical procedures that are specifically required due to the diagnosis of Dravet syndrome, there are some procedures that occur more commonly, including: feeding tube [...]

Surgery & Procedures in Dravet Syndrome

By |2021-08-25T09:41:06-05:00August 27th, 2021|Categories: Decoding Dravet Blog|

Patients with Dravet syndrome often require a surgery or other invasive procedure at some point in their life. While there are no specific surgical procedures that are specifically required due to the diagnosis of Dravet syndrome, there are some procedures that occur more commonly, including: feeding tube placement (i.e., g-tube, j-tube), VNS (vagus nerve stimulator) [...]

Sessions for Families New to Diagnosis

By |2021-09-12T16:59:21-05:00August 5th, 2021|Categories: Uncategorized|

Our Day of Dravet workshop on Saturday, October 30, beginning at 12:00pm ET, will focus on sessions that will be helpful for families who are new to the diagnosis of Dravet syndrome. Learn about topics you have heard about and get accurate information to help you make confident and appropriate decisions on what will be [...]

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