Ella’s Story
In hindsight, Ella was having seizures from at least 18 months old, probably a lot younger. In July 2012, when she was just over 3, I became suspicious that her pauses and eye flickering was seizures, and after gathering some video footage (shown in the photograph below), she was diagnosed in January 2013 with atypical absence epilepsy.
She was started on medication and within a few months her seizures had increased to a four figure number on a daily basis. We were losing our daughter. She was tired all the time, had stopped being the happy child we knew. She would need carrying out to the car, up the stairs etc. We got a wheelchair for her, as on a very good day she could walk 150 metres but otherwise very little. She was down to 5 minutes of activity at a time, and if we went to the park in the morning for half an hour, she would need to be on the sofa for the rest of the day.
We tried some medication changes with no real effect. By September 2013 our consultant suggested the diet and we were due to start in December. Unfortunately, due to staff shortages, the service was temporarily suspended. Then began the problems trying to get seen elsewhere. We chose Matthews Friends as our first choice of Keto service as they could see us straight away in January whereas there were waiting lists everywhere else. What should have been easy to organise, met barrier after barrier. In May, Matthews friends said enough was enough and that they could fund Ella to get the treatment she needed. A few weeks later after a trip down to Surrey, we started the diet. Two days after she went into ketosis, Ella went to the park in the evening for the first time in over 18 months.
She ran and ran. One week later she rode her bike for the first time, the bike that she had only managed brief periods of sitting on when it was bought for her Xmas 2012.
Before the diet she walked 150 metres on a good day, 2 months after starting the diet she walked out to Hilbre Island, she ran and walked 1.5 miles before needing a rest.
You might also be able to see in this picture that she was wearing big girl knickers. Her seizures are more than 80% reduced, she is happy, loves winding up her brother, being assertive about what she wants, she’s able to recall things we’ve done, she’s reading and writing words, we’ve got Ella back.
People often talk about the quality of life of the child, it is also the quality of life of siblings and us parents. Because of the diet, we all had a great summer.
Six months after starting the diet with Matthews Friends we had our first appointment with a local keto service. That’s 6 months of learning and life she would have missed out on, not un-significant in a child with developmental delays where every minute counts.
Matthews friends was an amazing start to our Keto journey. There are many different variations to the diet and different centres seem to favour different variations. We are lucky that MF never told us how they did the diet. They asked us how we wanted to do it and we came up with a fantastic mash up of several variations! Support is key to the success of this diet, and when we hit problems early on with Ella not eating, MF called me every day with ideas and words of encouragement. Even now, I turn to them for help alongside my local keto team.
In March 2015, 10 months after starting keto, Ella took her last dose of anti-epileptic medication after a long wean. She became brighter and brighter with every drop. And we were able to see how many of her difficulties were drug related compared to epilepsy related. The diet allowed us to get a clean slate, so to speak.
Over time we have tweaked the diet with trial and error and have now have reached the optimal level for Ella. It is October 2015 and Ella is still having frequent seizures but she is functioning brilliantly. The seizures themselves, absences, seem to only last a second or two and Ella continues functioning through them, although we can detect a slight slowing of her speech as her eyelids flutter. Doing the keto diet puts you in control as a parent; you become more confident and assertive. We are now at the point where we are considering adding in medication to the diet, confident that we will judge whether it is helpful or not and will work with her neuro team to quickly wean if we are not satisfied it is helping.
The diet is hard work, no denying that. But so is any new job, and that is how you have to view it in my opinion. It’s amazing how quickly you do the get hang of it, but be prepared to spend most of the first month or two in your kitchen. Don’t give up, take a deep breath, throw away the last rejected meal, and get the scales out again! Remember that MF are always just a phone call away. None of us are special that do the diet, so you can do it too, us epilepsy parents are stronger than we’ll ever know.
Zara
Recent photo of a happy and healthy Ella on holiday and walking up the largest hill in North Wales!
