Over 20 years ago Meryl Streep starred in the film ‘First Do No Harm’ which gained her a Golden Globe nomination. The film told the story of a young boy, Robbie, who was hospitalised with uncontrolled epilepsy and who was having multiple seizures daily. His doctors gave him medication after medication but it didn’t help. His parents were frightened not only by the life threatening seizures but also because their sons personality was slowly drifting away. Eventually the doctors offered surgery but his parents were anxious as to what that would mean. His desperate mother went to a library and found literature on the high-fat low-carb ketogenic diet. Against neurologists’ advice they took Robbie to the Johns Hopkins hospital in Baltimore to a specialist clinic and under the guidance of a dietician within a day his seizures had stopped. The film is inspired by true stories and along with the establishing of the Charlie Foundation charity in the United States and the Matthew’s Friends charity in the UK it gave a huge impetus to increase the number of ketogenic clinics for children. But not for adults.
My story is not as dramatic. Although I was diagnosed with epilepsy just over ten years ago, it was not until recently that I became aware of the true impact the condition was having on my life. I began to realise that even though I had experienced seizures, my main symptoms were cognitive – poor memory, processing and decision making – I have been told the symptoms are similar to someone with traumatic brain injury. Medication was not working so my neurologist referred me for video-telemetry (VEEG) – I was videoed 24/7 whilst being hooked up to an EEG for five days. However, after testing the neurologist told me that they had not found out any new information and there was nothing further they could do. I was devastated. To cut a long story short, after a year of getting second and third opinions my mum suggested that I tried the ketogenic diet after coming across the film First Do No Harm on TV (a cousin also told me about the diet after coming across it online). After further research I found out that at the very hospital where I was told that there was nothing more they could do for me there was a ketogenic clinic for adults. I suggested to my neurologist that I should be referred there. I have now been on the diet for six months and whilst my cognitive symptoms still exist I am less drowsy and my mood is better. It has not been the miracle I was looking for but it’s an important step in the right direction.
There is undoubtedly a disparity between the awareness of the ketogenic diet as a treatment for adults as opposed to a treatment for children. However, the facts are clear. Studies with adults have shown that after three months, about one in four adults on the diet become seizure-free and a further 17% have at least a 50% decrease in their seizure frequency (1). These are similar to studies with children (2). However, epilepsy affects 240,000 adults in the UK and 60,000 children (3) yet there are only four specialist ketogenic clinics for adults compared to 25 for children (4)
Epilepsy is not an easy condition to treat. Although a first medication gives 50% of patients seizure freedom, a second medication gives seizure freedom to just 14% and the rest, a third, will remain unlikely to be seizure free (2). Of these some will have to live with seizures. I believe that I should have been offered the diet a few years ago because nothing else was working but I am also concerned that there might be adults being offered surgery who have not been given the diet as an option and also that some of those experiencing medication side-effects from their anti-epileptics such as cognitive deficiencies, drowsiness, insomnia, aggression and paranoia (5,6) (indeed my medication could be making my cognitive symptoms worse) would also like the option of trying out the diet as well.
I can make some educated guesses as to why there is low awareness for the diet as a treatment for adults – there is not enough funding for research because pharmaceutical companies do not benefit from this treatment; the diet is just a little too far out of the comfort zone of most medics; there is a perception, like there is with ADHD and Autistic Spectrum Disorder, that epilepsy affects children but not adults and finally those dedicated parents who started ketogenic charities focussed, at first, on children. But things are changing – Matthew’s Friends have put together a beautiful book of recipes aimed specifically for adults; more studies are being published about adults on the diet and slowly, slowly more adult clinics are starting up. But more awareness and funding are needed. As for me I’m going to continue with the diet but I’m also going to try Cbd oil – another treatment that has helped many people but is not, as yet, on most neurologists’ radar.
Go to matthewsfriends.org for information about the diet
I’m not sure why the Huffington Post didn’t publish they – they said the topic wasn’t ‘quite right for us’ – so I’m guessing that means it’s too niche or too controversial please, which it might be. I’ve been on the Cbd Oil for three weeks now –under the advice of my naturopath I have increased the number of drops I am taking gradually from one drop a day to four but I haven’t noticed a difference in my cognition. I’m going to give it three months and then have another EEG to see if the number of spikes I am having in my brain activity has changed. The side effects of my medication might mean that i’m not noticing the benefit of the diet. I will let you know.
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