My daughter Poppy is now 8 years old and has been on the ketogenic diet for almost 3 years. As a toddler, Poppy was very happy and contented. She was such a funny little girl, the big character of our family. She had so much fun and was the life and soul of the house.
We noticed on a few occasions when she was a toddler, that Poppy made this wide eyed, funny face and at first, we just thought it was another thing Poppy was doing to make us all laugh, because that was what she was like. However, over the next few weeks and months, these episodes became worse to the point, we were getting really quite worried about her.
When Poppy was 18 months old she was diagnosed with epilepsy. Poppy was prescribed various medications, we were adding more and more medications and increasing doses over the next 3 years to the point where she was on 4 combined medications, but the seizures just seemed to be getting worse and worse. Poppy became very anxious, irritable, miserable, unhappy, aggressive, clumsy, and tired. She just could not sit still, it was a nightmare. She was a complete nervous wreck.
Poppy started school in September 2012 and her situation just seemed to be getting worse. Poppy had no friends, she seemed to be withdrawing from everything, she was developmentally delayed in all developmental areas. Poppy wasn’t learning at school, she couldn’t even hold a pen and she couldn’t tell me what was happening at school because she did not have the communication skills to do so. It broke our hearts to see our once full of life, adventurous, happy, funny and very sociable little girl turn into such a shadow of herself.
Poppy was having so many seizures at this point and the situation just seemed to get worse with every new med that was added. In January 2013, we had hit rock bottom. Poppy’s seizures were so bad and I had butterflies in my stomach all day every day leaving her at school. I felt sick every day with worry about how she was and expected a phone call at every moment to tell me something awful had happened to her. I didn’t even see the point in Poppy being at school. She wasn’t learning anything, she had no friends. It was just awful. At home, Poppy was becoming more and more violent, irritable and aggressive and she would often throw remote controls and juice cups at her poor brother’s head and all of this challenging behaviour was putting a huge pressure on us all as a family.
I had seen a poster about the ketogenic diet at our hospital years ago, but because our doctors had never mentioned it, we just thought it was a treatment that wouldn’t be suitable for Poppy’s type of epilepsy.
In February 2013, both my mum and mother in law watched the Channel 4 programme – The Food Hospital with the episode on how the ketogenic diet had helped this little boy with drug resistant epilepsy. They both insisted that I watched it. I kept putting off watching it because I was still convinced it was not a suitable treatment for Poppy. Eventually, I did and it gave me a little bit of hope that the life we were enduring could possibly change and that there was something out there other than more and more drugs which didn’t seem to be working anyway.
So, at our next neurology appointment, when we were all at the end of our tethers, we asked about the ketogenic diet and were told that the diet was available and we could try it! Knowing we were going to be allowed to try the diet made us excited about this amazing opportunity but I felt terrified at the same time. It felt like this was our final hope. But what if it didn’t work? What then? I really couldn’t carry on the way we were going.
I was a complete nervous wreck in the weeks leading up to the diet starting. Would Poppy eat the new high fat food? What on earth was I going to give her to eat? What if she wanted sweets, chocolates and crisps when she saw her brother and sister eating this? Would the diet even work for Poppy? It was our one and only hope and so it had to work, otherwise, what would we do next?
In the early days it was difficult coming up with new recipe ideas and I lived in constant fear of Poppy going off cream, oil, mayonnaise etc but thankfully I was put in touch with another mum, Laura Rees who really helped to offer ideas and support in those early days.
We had been on the diet 3 years and Poppy was finally medication free which was a huge roller coaster but we really saw so many cognitive improvements. Poppy is now able to string a sentence together, she can tell me about her day, she is reading simple books and her writing is flourishing. She has had a really rough few years trying to wean her meds which has meant horrendous benzo withdrawal and we are finally getting to a point where those withdrawal effects are disappearing, leaving a happy, bright, sociable little girl in their place. Our daughter is finally re-emerging from the drug fog and we feel we are getting our happy, crazy, spirited little Poppy back again.
Update May 2016
Poppy had been medication free for 10 weeks but unfortunately in April 2016 we hit a really rough period. Poppy was extremely anxious and having more and more seizures every day to the point we had 3 ambulances to her in 48 hours. We desperately tried to fight to adjust the diet and avoid meds but unfortunately Poppy deteriorated further before we were able to give the diet tweak a chance to work. At this point we knew the only way to hopefully give a quick fix would be to add a medication again. We decided after 3 years on Keto that we couldn’t carry on with the diet any more so we left the hospital with a prescription for Keppra. The neurologist, Dr Whitehouse was fantastic though and knew how reluctant we were to start adding back meds again and ending up in the same mess we were in 3 years ago. He recommended we start of on a very low dose of Keppra and increase each week until we were able to manage Poppy’s seizures again. At the same time, we had dropped the diet to a 3:1 from a 4:1 ratio as we felt Poppy was losing weight and had had a growth spurt so we also increased her calories. I discussed weaning the diet with our dietitian 2 days later and we were all prepared for Poppy to be weaned much to our dismay! 2 days after making all of these changes and I still don’t know for sure what has changed the situation or whether it is a combination of the adjustments we made but Poppy became seizure free, and the anxiety just stopped and she hasn’t had it since. We then decided we are not going to give up Keto, we are sticking with this lower ratio, with an increase in carbohydrates and the very low dose of Keppra. We haven’t even needed to increase the Keppra dose because she is doing amazing! This is the best Poppy has been for a very long time and we really hope we have found the perfect balance for her. She is back at school full time, she is engaging in her 1:1 tuition and even wants to join in with the rest of her class. She wants to go to the park again and play which is a million miles away from the little girl we had just a few weeks before who was too scared to come out of her bedroom, go to school and interact with her family. She is so happy and hearing her giggling again and wanting to join in, hearing her recall things that she did years ago feels like a miracle. Her Teaching Assistant told me last week that she is retaining information for the first time in her life and she is literally thriving in ways we could never have imagined possible. To think we were going to give up the diet just a few weeks ago and now we have finally after 3 years found our perfect ratio/calories and a very low dose of med just shows that you can never give up hope that one day it could all work for your child.
Karen Ridley – Mum to Poppy.