Sitting in a Neurology appointment with our 8 month old daughter, Izzie and being told about how awful her brain MRI and CT scan looked and how bleak the future seemed, the word that actually cut me most was “epilepsy”. At that point we hadn’t seen seizures (although mainly because I wasn’t recognising them!). Sadly, soon more frequent tonic-clonics started.

Then, when she was two years old I vividly recall the phone conversation with her paediatrician after a 3 day EEG. It literally stopped me in my tracks when he told me I needed to sit down… it was much worse than we’d hoped and she was having over thirty seizures a day - I had noted just four. When he then said she was at risk of Sudden Unexplained Death in Epilepsy (SUDEP) I couldn’t even get the words out to ask all the questions I had. I didn’t want to let her out of my sight and I vowed to do everything I could.

By five years old we’d tried all the meds in all the combinations and she was still struggling to go a week without an ambulance trip to hospital where professionals mainly scratched their heads. We thought it would be something we had to live with. With the constant changes she was generally aggressive or like a zombie. Her seizure plan was that we could go up to ten minutes before stepping in. Watching someone you love in a seizure for that long is soul destroying. Luckily, I’d found The Daisy Garland charity and they had provided a night time monitor for some peace of mind and also offered lots of valuable support. I’d read about the keto diet and pushed for Izzie to start as soon as she could. The charity were instrumental in this. When I finally started the training at Birmingham Children’s Hospital for the diet it seemed quite daunting and I was dreading taking away her favourite pasta meals! I didn’t want to get my hopes up…but after a week of being in ketosis Izzie was holding her head up and suddenly started trying to speak more. The difference was such a boost and spurred us on. There were tricky times juggling it all but I soon found how to make it work for us and she really loved her keto chocolate puddings! After a few months her seizures were notably decreasing and she was so much brighter and happier as was also starting to sleep better. When I spoke to people about the change in her no one could quite believe that what she eating and drinking was making the improvements! Izzie was on the keto diet for two years before I reluctantly agreed to to wean her off as she started losing too much weight. Her EEG at the end looked like it belonged to a different child.

After two years of being off the diet she is continuing to make progress way beyond anything they ever predicted, because her seizures are now under control. We have a bright, bubbly and happy little girl who we hope will always defy what she has on paper! We can’t thank The Daisy Garland enough for their support 💕