If your child has Dravet, take note

KarenB

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I posted this in the library section, but also wanted to put the link here, in case parents miss it over there.

The U of Mich (which is one of the leading universities in epilepsy research) has been making strides in identifying the cause of seizures in those with Dravet Syndrome. They have taken skin cells from children with Dravet, and from that produced stem cells, and from there have made some remarkable discoveries.

http://www.uofmhealth.org/news/arch...ish-stem-cell-research-reveals-clues-diseases

This is one of the childhood epilepsies (except the children never outgrow it) that often is progressive, and can be associated with devastating effects on development. A number of epilepsy meds actually make seizures worse in these children, and only a few seem to offer any sort of relief at all. Interestingly, the Ketogenic diet has a high success rate with these kids, which may have something to do with the origins of the disease.
 

jimj

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That is a really interesting study. I'm constantly amazed by what the researchers can discover. However I think it will years before we see anything used in practice based on their work (although I'd be happy to be wrong :).

Another Dravet related study I find really interesting is:
https://www.ncbi.nlm.nih.gov/pubmed/22554283

I don't know if you can get fenfluramine anywhere anymore, but I'd sure be interested in trying it if it was available in the U.S.
 
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