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Useful resources

Things I find myself referring to regularly - to be updated as I find more good stuff.


Dravet Syndrome/SCN1A epilepsies

  • The Dravet Syndrome Foundation

  • There are also Facebook groups for caregivers of Dravet patients run by the DSF - both a worldwide group and regional groups. You'll need to answer a few questions before you can be approved to join.

The ketogenic diet for epilepsy treatment:

  • The Charlie Foundation - the go-to for information about using the keto diet for epilepsy

  • The Ketogenic and Modified Atkins Diets (a great book that is written by the experts but extremely easy to read - and even includes a keto-diet-friendly Wegman's shopping list!)

  • The Keto Diet Calculator - ask your dietician for access and training on using this to open up a lot more opportunity for creativity and flexibility in cooking for your kid

  • Children's Hospital of Philadelphia recipes - a nice collection of recipe ideas, but be warned they're very heavy on nuts (which is out of the picture for us so I have to experiment with replacement ingredients)


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