Theodore’s Story
Theodore’s Mum Victoria shares their experiences with ketogenic diet therapy
When beginning your keto journey, it can be incredibly beneficial to read about and learn from the experiences of others. This can help address your questions and alleviate any concerns you may have like; What motivated them to try a ketogenic diet? What was the preparation process like? How has it affected their child and family? While your dietitian can provide answers, hearing from someone who has firsthand experience is invaluable.
In this article, Victoria shares her family’s experiences with the ketogenic diet, and we extend our heartfelt thanks to her for sharing their story.
First seizures and diagnosis
On Monday 23rd January 2023 at 8.55am, I received a phone call that would alter my families life forever. Our son, Theodore, had had a seizure in his classroom. Whilst the rest of that day is a blur, I do recall the paramedic describing the seizure as ‘sounding epileptic’ – many people were horrified that she had said this to me, but actually in lots of ways I am grateful as she gave me the heads up on what was to be the hardest year of our lives.
Theodore had spent the first 4 and a half years of his life in relatively good health, he was progressing well at school, making friends and loved being with his family.
January 2023 hit us like a double decker bus, we had no idea it was coming, we weren’t waiting for it, and we certainly didn’t want it.
Theodore continued to have seizures every couple of days for a week. After the 3rd seizure he was given an MRI and EEG and as a result of those tests he was diagnosed with absence epilepsy.
This diagnosis was a shock for all of us, I cried a lot and although this is what my hours of research had indicated I still felt sad and lost.
Whilst I was pleased absences had been detected on the EEG, I was also sceptical that this was the only thing going on. Tonic Clonic seizures were something more and we knew that Theodore had had at least 3 of them.
As the months progressed we constantly monitored him, we watched for anything that seemed out of the ordinary and we wrote down everything. We had opted to give him the first medication Ethosuximide, but we were unsure whether this was helping him.
What we did notice was a huge change in Theodore’s behaviour. Our happy, confident and kind boy had turned into someone else, his behaviour was aggressive, he was rude, he wouldn’t sleep properly and lacked proper focus.
We watched as he was unable to maintain friendships and his frustration and anger grew and grew – epilepsy had become a monster.
In May 2023 Theodore began experiencing what we originally thought were ticks but after another tonic clonic, the drops then began to come. Theo would be walking along and then all of a sudden he would lose himself and fall to the floor, he was gone for less than a second but this was happening more and more frequently. This was accompanied by a strange grunting sound and a head movement.
With everything that had been going on I was constantly researching, I used charities and UK specific websites to help me and asked other Mums in support groups and on Facebook. The more and more I researched one syndrome kept coming back at me – Myoclonic Atonic Epilepsy (MAE or Doose Syndrome). We took Theodore out of school for a week in order to film as much as we could, we sent this to our consultant who referred us to a Paediatric Neurologist. While we waited to see the neurologist our son was put on more medication and his personality continued to change, the medicine had little impact on his seizures but huge impact on his personality and our lives.
The mornings were always worse and some mornings we had to carry him to the toilet because his drops were so bad. His arms and legs were covered in cuts and bruises where he had fallen and mentally, he had become so frustrated by it all. The impact on our family was immense, daily arguments about how to deal with his behaviour, exhaustion from staying up on ‘seizure watch’, struggling to go places in fear of seizures and his appetite fuelled by the medication was driving us mad. He was constantly hungry, and his weight was rapidly increasing making him bigger and stronger than a normal child of his age.
Ketogenic diet therapy offered hope
By the time we got to see our neurologist in August, I had pretty much decided that he had MAE. So when she affirmed what I had been thinking, it didn’t hit me like a tonne of bricks like his first diagnosis had. I actually felt relief. At least with this I knew what the treatment should be, and I knew we would be on the waiting list for Keto. Research had told me that the Ketogenic Diet should be the second thing that was offered to children with Theodore’s syndrome as the improvements were drastic. Theo was already now on a third drug which was lessoning the power of seizures but not the frequency, it also made him incredibly sleepy. I went into that meeting knowing that we were going to ask for Keto.
The neurologist agreed it was our best option but also wanted to increase the clobazam and potentially add another drug whilst we were waiting. As parents we obviously only wanted what was best for our son but in all honesty we were losing him. The monster that is epilepsy had taken over his body and it was just not listening to any medicine, in my heart I knew that more drugs would just add fuel to the fire and whilst I wanted our lives back at this point, I knew that we weren’t going to get it with medicine. We made the difficult decision to say no and to continue as we were in order to try and get to Keto first.
As I left that neurologists room I felt hopeful, we even went out for lunch, thought we would have one last treat before we knuckled down and began the diet. A week later I received a letter from our local keto centre and I thought that this would be it, honestly I thought they would be booking us in for our first appointment and here we go.
I looked at that piece of paper and rang my husband in tears, it was a two year wait!
I wasn’t sure what next so I began ringing, emailing anyone I could to see if there was anything that could be done. In the meantime Theo was getting worse, behaviour was out of control, we began receiving complaints from his after school club and after school activities telling us he was becoming unmanageable, we felt scared to leave him in a room with his brother in case he was hurt and putting him to bed left us in tears.
In September, he had 2 tonic clonic seizures that landed us in hospital. Doctors were growing in concern that he was getting worse and as I explained to them that we were waiting for Keto.
We didn’t have 2 years. Our family was crumbling under the gigantic hold that epilepsy had on it, we were all suffering, physically and mentally and we could see no light at the end of the tunnel.
It was suggested by our neurologist that we could explore going with a private Ketogenic Dietitian. Although we couldn’t wait two years, equally we couldn’t afford to go private.
In an incredible turn of events, we were given a lifeline and were able to explore going private and Jen was recommended.
Ketogenic diet prep begins
After our first consultation we felt empowered, for the first time since it all started we didn’t feel like epilepsy was just something that was stomping through our lives, we had a reasonable plan, we had something that we thought would work. It wasn’t necessarily about winning, it was about finally being able to fight back, to have the tools to fight a beast none of us could see and set about rescuing our 5-year-old trapped inside.
The learning modules, which you complete at the start of this journey with Jen, give you such a good head start so that it doesn’t seem like such a daunting process.
There was no ‘big’ change, but all of the little changes added up into something pretty wonderful because it didn’t take long for us to realise our rescue plan was working!
Day to day life on KD and positive benefits for Theo and his family
From our initial consultation with Jen, we began slowly making changes while we learned what on earth we were doing. We changed our food mindset completely, we slowly switched milk from semi skimmed to Almond and Soya (which he actually loved). We then slowly got rid of sugar, cutting down on cakes and sweets, switching to sugar free medicine, we went so slowly that when Theodore had his last McDonalds he didn’t even remember it. Each week we changed or added something, so that when we got to beginning the diet Theodore didn’t really experience Keto flu.
As Keto progressed our child came back to us. Our kind, caring, lover of life was clawing his way out of the darkness and leaving behind the abusive, violent and generally non compliant boy behind!
Pretty quickly, we began to experience weeks at a time of seizure freedom. We had a life, a different one to the one I imagined we would have, but still a beautiful life.
Theodores moods can still move and vary, but he is happier and calmer, the fog seems to have lifted and his speech is clearer. He is thriving at school and all our relationships are better for it. We look forward to the future and feel empowered and more in control.
We mainly let him pick what he wants and then we make a keto version of it, he has always been a picky eater so whilst we like him to explore new food we don’t worry about it too much and we have gone days at a time having bacon for breakfast, lunch and dinner. We cheat wherever we can – keto bread, rolls and wraps etc… are bought rather than homemade. We each learn the recipes he loves and try to twist them round a bit if we can, but we never push him. We learn about him all the time, he would rather have a tiny amount of what he loves than lots of what is ‘ok’ he would take 1 grape over a handful of blueberries every day.
We have to remember that we are not on the diet and feed his younger brother carbs! Sickness is particularly hard on Keto and it sometimes leads to a backwards step, but then Jen is there to help us cope with sound advice and a truly tailored plan to whatever situation we find ourselves in.
Sometimes he asks for things that we can’t make a keto version of and I feel sorry for him, especially when he goes to birthday parties and all of his friends are tucking into slices of pizza and cake. For a five year old, he has an incredible understanding and knows that this diet helps him to feel better. He has much more energy and rather than having to sit out of PE lessons at school, he participates in the full lesson and his teachers have fed back to us that since he has started the diet, they have noticed a huge change in his attitude, behaviour and concentration levels.
Epilepsy is not winning in this household, we are definitely winning the fight here.
Not everyday is rosy, the hard days feel just as hard but the good days are amazing and outweigh the bad.
Thank you Jen, you have helped not only Theo, but us as a family, cope with what is undoubtably the most difficult thing we have ever faced.
Medical Ketogenic Diet Therapy Clinic
Our medical ketogenic clinic supports children and adults to undertake medical ketogenic diet therapy for epilepsy, metabolic disorders and migraines.
