Our daughter Isabelle was diagnosed with a catastrophic form of epilepsy called West Syndrome* at ten months old. She was treated with two very heavy drugs (prednisolone and vigabatrin) in very high doses and her prognosis was really not good.

Less than one month after the West Syndrome seizures were controlled, she developed a number of different types of seizures. These seizures have never been under control.

Over the next four years, Isabelle was on a varying cocktail of three anti-epilepsy drugs (sodium valproate, levateracetam and clobazam) in high doses, constantly being adjusted to try to reduce seizure frequency whilst trying to keep negative side effects to a minimum. We had also tried pyridoxine but this wasn't successful. During this time we asked our then paediatrician about trying the ketogenic diet as a form of treatment but were advised against it; this was our first experience of epilepsy so we trusted his experience and expertise.

Soon Isabelle was on all three drugs at maximum therapeutic dose. At this point we formally asked our new paediatrician for a referral to the ketogenic diet. Luckily he was much more positive about using the ketogenic diet as a successful line of treatment.

Worryingly Isabelle's seizure type then started changing and increasing in frequency. In desperation, we tried sequentially adding two new drugs (levateracetam and topiramate) but she reacted badly to them and one even worsened seizure control. Our options were running out.

Soon after being referred to try the ketogenic diet we were contacted by a Daisy Garland funded ketogenic dietitian at our local hospital.  Worryingly, by this time Isabelle was having upwards of eighty to a hundred seizures a day, so we were poised and ready to start this challenging yet exciting adventure, full of trepidation yet hope. It HAD to work... as the next option would be VNS; brain surgery.

What a success the ketogenic diet has been! Since starting the diet in December last year, Isabelle's seizures have reduced from eighty to a hundred a day to five to 10 a day

Not only have Isabelle's seizures reduced but her cognition has significantly improved, her speech and understanding have progressed so much since the start of the ketogenic diet and she is a much, much happier little girl. She's recently started using four word sentences which is just incredible. It is as though the fog in her brain has lifted.

Perhaps more incredibly, the ketogenic diet has enabled us to wean all of Isabelle's anticonvulsant medicines, with the diet controlling her seizures. 

Without doubt, the ketogenic diet has been life changing for Isabelle, and our family, and we consider ourselves very lucky to have been able to use this as a method of treatment for her epilepsy. Without having our fabulous Daisy Garland funded ketogenic dietician in our local hospital and support from The Daisy Garland parent support group, Daisy's Keto Cafe, I just can't see how we could have achieved such incredible results for our little girl.

West syndrome is a constellation of symptoms characterized by epileptic/infantile spasms, abnormal brain wave patterns called hypsarrhythmia and intellectual disability.