Our daughter, Neve, has Dravet Syndrome*.  She had her first seizure when she was just four months old and has multiple seizure types, which are highly drug-resistant.  Her seizures range from short absences to status seizures lasting an hour and a half.

We started the ketogenic diet when Neve was twenty-two months old and have never looked back.  We had to make quite a few tweaks in the early days but our fantastic Daisy Dietitian was always at hand to advise and support us. 

In the first couple of years of being on the keto diet we managed to reduce Neve’s medication by two-thirds.  Her long status seizures disappeared and we no longer ended up in hospital with every seizure. 

As her medications were reduced so our little girl ‘woke up’. No longer in a pharmaceutical stupor, she began talking and interacting with us much more and she started walking and taking an interest in her toys. 

As well as epilepsy, Neve has autism and in the last three years we were able to make her ketogenic diet both dairy and gluten-free.  This was much easier than it sounds as Neve would happily take a variety of oils from a syringe and so we were no longer had to add the fat to her food! 

In total, we stayed on the diet for nearly 6 years and I can’t imagine what life would have been like without it.  The diet is an amazing treatment and it has been a wonderful privilege speaking to Sara and David Garland throughout our keto journey.”

* Dravet syndrome, previously called severe myoclonic epilepsy of infancy (SMEI), is an epilepsy syndrome that begins in infancy or early childhood. Children with Dravet syndrome initially show focal (confined to one area) or generalized (throughout the brain) convulsive seizures that start before 15 months of age Other seizure types emerge after 12 months of age and can be quite varied. Status epilepticus may occur frequently in these children.