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.
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.
Over the past year and a half I have gained quite a penchant for Facebook communities that have helped me understand my condition. I have felt connected to people I have never seen and, at times, these people have given me motivation to continue and have helped me search for solutions where doctors have told me there was none. I have felt a deep sense of belonging to these communities – I have felt welcome whatever my mood or questions I may have. But in finding these communities I have forgotten, or more truthfully, taken for granted – a community that means more to be than Facebook communities – a face-to-face community (aka – the Borehamwood Jewish Community).
I am very privileged to belong to this community where, I feel, everyone no whatever who they are, is welcome. It’s not perfect (what online or face-to-face community is?) but it’s where I feel at home and I realise that, especially in today’s disconnected age, it something that I should be very grateful for. I used to think that to really feel part of a community you needed to give to it – to organise activities, to make meals for people that are sick, be on the synagogue board, to run children services – after all what you give in you get out – but after a while of trying these things I realised that I just couldn’t give in this way – because of my illness I feel disconnected from my actions and therefore when I give with my time I just don’t feel a sense of satisfaction and just can’t somehow give in the way that I want to (People that know me might say that I do give to the community but I don’t feel that inside). And so I began to think that because I couldn’t give to the community perhaps I wasn’t so much a part of it as I wanted to be.
However, a few weeks ago we read in synagogue the weekly biblical reading was called ‘Vayakhel’ and it made me re-evaluate my value to the Borehamwood Jewish community. Vayakhel literally means ‘and they assembled’ – the reading tells the story of the Jewish people coming together to listen to the laws of building the tabernacle. They gather and they are given a task to do and each person has a different task, a different role to play. The word –vayakhel has the same route as the word ‘Kehilliah’ – a community. I had always thought that in a kehillah there were some people that were more important than others – some had more friends, some had more money and some contributed more in terms of their time. However, I have learnt that in the true sense of the word kehillah these people are no more a part of the kehillah, the community, than anyone else.
Last November I went my children to the local Remembrance Sunday parade. Together with my son’s beaver troupe and other organisations we gathered by War Memorial and feel silence for two minutes to remember those that had fallen and for the first time that I can remember I felt part of a different community – the Borehamwood community (ie not just the Jewish one) – it’s a shame that it had to take such an occasion to make me feel that way but just the act of gathering seemed to do it. Each person was important – the rabbi, the priest, the major, the beaver leader, my son the beaver and me the mother just watching with her daughters at her side. Without each component the gathering would not have had the same feeling. And so I have concluded that all different types of people are equal members of a community, whether they have many friends or none, whether they are rich or poor, give in time to the community or not, well or unwell, young or old and that I should feel privileged that I have such a community and, even if I am not contributing to it in the way that I would like, I should feel that I am playing an important role just by simply gathering in a place and being counted.
In medical news
There are other things that I realised have forgotten. Since I start the ketogenic diet I had forgotten what it was like to feel really drowsy and I had forgotten what it was like to feel suicidal. Last week I tried to eat a few more carbs and a bit less fat in an attempt to reduce the side effects that I was getting from the diet. I ate a little more carrots and peppers and a little less mayo in my meals. But when I went to the cinema I felt myself slowly becoming drowsy – not in a tired way – but in a I’m totally out of it way and I remembered feeling that way before I was on the diet and I felt it quite a lot. And then I had a little suicidal thought. It was only a little one, not the barrage of ‘I want to kill myself’ every five minutes that I used to have, but it was enough. I didn’t want to go through that again – after all I have three children who need me. So I have decided to stay on the diet, for now at least, even though words keep on coming out of my mouth wrongly (this week I said a chocolate mousse with grated crated on the top tasted really nice, when I meant to say grated chocolate) and my memory might be getting worse.
Also this week I spoke to my Nice Neurologist over the phone (they will speak to you between appointments if you are persistent) and she said that there was no need for me to have a 24 hour EEG again, because I am having on average eight spikes, which last up to a second every hour and thus a one hour EEG should collect all the necessary data. ‘So, OK,’ I’m thinking, ‘I not having seizures but nevertheless there are eight things that are putting stress on my brain every hour, that are not happening in other people’s brains’. After having this conversation, I went to look at my report for my video-EEG in July 2016, when I started writing this blog, and I noticed what might be a slight administrative error (ie saying there were seven spikes during the daytime rather than seven per hour). Nice Neurologist said that she would double check the original data because I would like to know if things have remained the same since July 2016 or got worse.
Next week, just before the Jewish festival of freedom, Passover, begins I am going to the naturopath to start cbdboil treatment. I pray that it gives me the freedom from my (lack of) thoughts that I am so desperate to obtain.
Last month on some epilepsy Facebook groups I belong to a member maliciously put up a flashing light GIF which triggered a couple of members to have seizures and one to go to hospital. Unfortunately, the police were unable to prosecute because this wasn’t considered malicious communication. UK people please sign this petition to get the law changed.
I am writing this blog to because I am in a dilemma and doing so might help me gain clarity over which path I should take (apologies – this is the longest blog ever).
As you will recall, I am on the ketogenic diet eating 4 grams of carbs and 40 grams of fat at every meal in the vain hope that the bi-product, ketones, which are derived from eating this way, will control my epileptic activity and thus improve my cognition.
All was going well: Cook in bulk and freeze; check the menu and make adaptions if I was going out somewhere; eat differently to everyone else. It was a habit – I just got used to it.
But the diet has ‘side effects’ that the dietitian didn’t tell me about – I can’t try the biscuits that my ten-year-old daughter has made; I can’t eat the challah bread on a sabbath meal, and because in traditional Judaism a meal isn’t considered a meal unless you eat bread I am not allowed to wash my hands in the traditional way before the meal or sing the special blessing afterwards; on takeaway night I still have to make my own food and sometimes I eat quite late because I have made everyone else’s dinner but not my own.
These things are difficult for me but I know that I can sustain it if the benefits outweigh the side effects. And so this is where I reach a crossroads – I have been on the diet for four and a half months now and I need to make a decision as to whether to continue. The dieticians and doctors say that you should see a reduction in seizures by three months of being on the diet but I have heard cases (on Facebook – where else?) where people don’t see a reduction until six months. But because I wasn’t having seizures – ‘only’ a cognitive deficit it is always going to be difficult to assess if the diet is actually helping me. I am using four measures to help me make this assessment. The first measure being observations from those nearest and dearest to me and they have, almost unanimously, said that I seem more alert and in a better mood. The second is my own self-assessment – I agree my mood is lighter, I feel stronger. But other things are also happening as well. My memory has deteriorated – the other day I went to make myself a cup of coffee and after I made it I put the cup of coffee down and right next to it was another cup of boiling hot coffee that I must have only made a few moments earlier. I’m also noticing that my propensity to get the words that I want to say out of my mouth has reduced. Instead of telling my son to ‘Hurry up and go to the toilet’, I told him to ‘Go and put your clothes down the toilet’. Obviously he found this hysterical – but it was disturbing for me. So my self-assessment of whether the diet is working for me is a mixed bag.
The third measure is a neuropsychological assessment which measures cognitive processes such as problem solving and memory. I had a test before the diet and one three months after I had been on it. The pre-test results were like someone with amnesia. After three months on the diet my scores improved in all areas. However, I am aware that, as any good neuropsychologist will tell you, the assessment does not measure everything and that other people’s observations and my own are just as important.
The last measure is an electroencephalogram (EEG) – a measure of my brain activity. I had an EEG before I started the diet, which like all my EEGs, shows that I have epileptiform activity (a propensity to have a seizure) but I am not having seizures. I believe that it is this epileptiform which is causing my cognitive problems. I was on edge for three and a half weeks to get the results of the EEG. And yesterday the results came in – there has been no change in my epileptiform activity since I started the diet. However, just like the neuropsychological evaluation, and as any good neurologist will tell you, I am aware that the EEG does not measure everything that is happening in by brain.
In amongst all of this I have to take another factor into account – I want to come off my meds. I have been researching (on Facebook – where else?) the fact that my anti-epileptic medications could be having a detrimental effect on my cognition in addition to the epileptiform activity. However, coming off meds could be dangerous (I’ve had clonic tonic seizures previously because I changed or forgot to take meds) and so I need to make sure that something else will control my epileptiform activity before I make any changes.
So now my dilemma – stay on the diet or come off? Over the past year, I have realised that it is important to be one step ahead of the game – I have to ask myself – what should I try next if this medication/therapy doesn’t work. My next avenue after the ketogenic diet is CBDoil which is made from hemp – part of the cannabis plant. What I am talking about here is the oil that you can by over-the-counter at many health food shops, or online and not Medical Marijuana. Medical Marijuana, which can treat a host of conditions, is made from the marijuana part of the cannabis plant and currently, unfortunately, UK doctors are not allowed to prescribe it (although it is available in many other countries included 27 states in the US, Israel and the Scandinavian countries).
If you read all the literature (ok, websites) on CBDoil you will find out that it is the new miracle cure for anything from brain cancer to ADHD, chronic pain to epilepsy. There is not as many double blind trials for the legal substance CBDoil as there are for pharmaceutical drugs but if on Facebook groups (where else?) many people are saying that it has reduced their seizures then who am I to knock it and say that it is load of baloney. If it works, it works.
So, what’s the dilemma, I hear you ask – just go onto the next thing – try the CBDoil. Well two dilemmas? Firstly – should I come off the ketogenic diet? I can see that in some ways it has worked, but in others it has made things worse and the reason for going on the diet was to improve my cognition and not my mood. And secondly – if I am going to try the CBDoil which brand should I try? The CBDoil market is entirely unregulated –there are many different brands and each brand has several products – it is a bit hit and miss as to which one works.
In writing this blog, I have come to the clarity that I was looking for. I feel that the ketones might be over-reacting in my brain causing cognitive overload and therefore just like reducing a medication, I am going to decrease the amount of ketones I am making. I can do this by slowly (over a number of weeks – it is just like coming off an anti-epileptic medication) reducing the amount of fat and increasing the amount of carb I ingest – so that my diet becomes similar to a ketogenic diet for weight loss. People who follow the weight loss programme strictly still create ketones, but not to the same level as on the medical diet and people on this diet often say that they feel more energised than they used to be. It is that energy that I still want to maintain.
Once I have got to a fat/carb ratio I am comfortable with I will go to a naturopath that I know who specialises in CBDoil (obviously if I feel that my mood/ alertness has reduced significantly I can always go back to my old diet). It will work out more expensive to buy the CBDoil through her (because I will have to pay for her time and presumably she will recommend an expensive type of CBDoil) but I am confused as to which product to buy and if I go to her she will make the decision for me. If I feel that the CBDoil is working, I will try, under the supervision of a neurologist, to come off my meds.
Obviously I really don’t have a clue what I am doing. It’s guesswork really. But it’s an educated guess and I have come to realise that I am the best person to make these kinds of decisions.
In other news
I feel like I am getting towards the end (or a new beginning) of my story. It’s just a hunch, and I could be wrong. Anyway if the end does happen, I have decided that I would like to get my blog published as a book. Somehow over the last year and a half I have amassed about 40,000 words in musings and they could be of interest to other people. To that end I have commissioned a proofreader (OK, asked a friend a favour) and then if I do get to a final chapter I might as well send it to an agent or two and see what they say. After all, I’ve got nothing to lose.
PS – A note on medical marijuana – there are many different strains of medical marijuana and each one treats a different condition and I believe strongly that if it can help people, as in the case of little Alfie Dingley, then it surely it should be made available for this use. Although I do not know them, I am sure that if Alfie’s parents thought that the legal substance CBDoil, which they can buy over-the-counter, could help their son they would have given him that rather than going through the exhausting process of trying to get medical marijuana legalised. As far as I understand it CBDoil and medical marijuana can treat similar conditions – but currently it is a bit hot and miss as to how successful CBDoil is but this is not the case with medical marijuana, where each product is grown to treat a specific condition.
To join my Facebook group go to https://www.facebook.com/groups/371346339966284/
I am still on the ketogenic diet and my blogs will be published by the Epilepsy Society in due course. In the meantime I thought I would share with you a letter I wrote to a neurologist:
I know that you have trained very hard for a long time to get to your position and I want to thank you for the good work that you have done to improve the quality of lives of so many people. However, sometimes when I come out of a consultation with you, I do not think that you have truly met me – Sharon Ross – I think that you have met my EEG or my MRI, but you haven’t met Sharon Ross, mother of-three, struggling with life, clutching at straws but still with Hope. Therefore, I am writing with two suggestions as to how you, and others in your profession, might improve your professional standards and thereby increase your ability to help me and the hundreds of thousands of other people with epilepsy.
You obviously have seen how people with epilepsy behave in a hospital ward and in a consultation room and you also are up-to-date with medical science’s current understanding of the brain. However, I believe that to treat a person you also need to know a person. So my first suggestion is that you get to know the group of patients that you serve. You could do this in one of two ways. One way could be to hang out with someone with epilepsy for a day, for a week or on an ad hoc basis. Then you could see for yourself how their children react when they have a seizure or how not having a driving licence has meant that they have had to retrain in a profession – moving away from the dreams they had as a child or how the anti-epileptic medication (AEDs – see point 2 below) really seems to be screwing with their head.
Another way to get to know your patients would be to join some epilepsy Facebook groups, read what people have written, but do not comment (NB As a member of some of these groups I would be quite happy for you to become a member, but some groups may not allow you to join) . In these Facebook groups you will find a range of comments from ‘I applied for benefits, appealed and still didn’t get it but I can’t work and I really don’t know how I will carry on’ to ‘I’ve had two brain surgeries and I’m still getting seizures’ and ‘I’ve found it difficult to have a relationship because when I have a seizure, they get scared and walk away’. You will also find signs of Hope on these groups – pictures of children holding up signs saying ‘one year seizure free’, ‘two months seizure free’; 100s of responses for requests for prayers as a loved one goes into surgery and lots of ideas and suggestions and messages of support to those that are going through a difficult time from those that have been there and done it.
Getting to know a person with epilepsy or reading through comments on social media groups might give you a different perspective of what epilepsy is about and also a bigger sense of satisfaction when you manage to find a good treatment for a patient. There are of course, others in your profession who show more empathy and understanding, I am afraid to say, than you do. However, I do believe that rather than go to yet another conference, or write another research paper they, like you, would benefit from increasing their understanding what it is like to live with epilepsy in the ways that I have mentioned.
And my second suggestion as to how you could improve your professional standards is that you could, like the pharmaceutical industry that serves us, be a little more honest about the side effects of AEDs. The side effects listed on a typical packet of AEDs sound pretty innocuous – ‘dizziness’, ‘fatigue’, ‘acne’, ‘unwanted hair growth’ and one or two might say things like ‘behavioural changes’ or ‘memory problems’. However it is well known that most, if not all, AEDs can have cognitive side effects such as ‘problems with thinking, remembering, paying attention or concentrating, finding the right words, or other symptoms’. I suspect that the fact that these side effects aren’t mentioned most packets of AEDs is not because anyone has acted illegally or in an underhand way – it’s just that it’s difficult for a patient to have the self-awareness to say exactly what cognitive side effects they are having and therefore they don’t report it. However we do know that as ‘seizure medicines lower the excitability of nerve cells in the brain, they can also affect normal activity’ and even if the precise side effects of each medication aren’t known the general rule that AEDs can cause cognitive side effects. Therefore, it would be wise of neurologists when discussing medications with patients and their families to mention this so that they can weigh up the risks and benefits before taking them (and indeed family members should look out for them). Without this discussion some patients could not be aware of the side effects of the drugs that they are taking and their quality of life, measured not in numbers of seizures, but in other more qualitative measures, might reduce when on them. Therefore to increase professional standards in neurologist should be having these discussions with patients.
I thank you for taking the time to read this letter and I wish you much luck in your future endeavours. If you would like to discuss anything I have raised in my letter, please be in touch.
With kind regards
NB I haven’t sent the letter, indeed it was not directed at one particular neurologist – but maybe I should!
To you my blog go to https://www.facebook.com/groups/371346339966284/
 Or to be more precise, as you well know, 600,000 people in the UK with epilepsy and 50 million people worldwide.
I am still doing the ketogenic diet and my blogs will be published by the Epilepsy Society (although there is a time lag) but today I would like to discuss again with you free will, because it is something that I think about a lot.
Sometimes, it seems to me that I have no free will. I know theoretically that I should make sure that all my children’s clothes are clean and ready the night before school. I know it now, as I type, but I rarely do it – I forget. My desire to do something and the ability to act upon it seems to be juxtaposed. And so it seems with this and a million other examples, my free will has been yanked out of me and thus something fundamentally human has been taken away.
Yet somehow, given my circumstances, on the face of it, I have made wise decisions and my life is turning out well. I married a man that I love, we have three beautiful children, live in a nice house and I have some very special friends. I also made a big decision to become an observant Jew and in doing so have made, over time, a radical shift in the way I go about life.
‘How can this be?’, I ask myself – how can I on the face of it be making good decisions, when on the inside it often doesn’t feel like I am making any decisions at all. And then I ask myself – what about other people with neurological disorders like dementia, schizophrenia, bipolar, ADHD and epilepsy like me – do they have free will? We are taught that the reason we are different from animals is because we have ‘free will’ but because my free will is limited does that mean that I, and others with similar issues, are not so human after all.
After doing a bit of thinking and after trying to read up the subject and then not taking it all in, I have come to the conclusion that in some very odd way, I still do have free will and I am very much human and that therefore others with neurological conditions have free will as well. I have come to understand that there are three types of knowledge – intelligence, cognition and intuition/ the soul (this very roughly follows the Jewish idea that there are three types of knowledge – chochmah, daat and binah). Intelligence is thinking conceptually – some people have it in abundance and can argue theories and ideas on all sorts of spurious ideas – and have less of it. You do need some to live independently and make decisions about the way you live life but you are still human without it and thus you have free will.
And then there is cognition – this is the bit that I struggle with, as do some other people with neurological disorders. To function independently you need to plan, to process, to remember and crucially to make decisions. For whatever reason schools put more of an emphasis on intelligence than cognition, but as I have tried to illustrate in my blogs if you have intelligence but are limited in some way with cognition life can be hard. But to be human you do not need to have cognition or intelligence. You still breathe.
However, what every human definitely has is a soul, a nefesh – even those people who have a whole myriad of learning difficulties have a nefesh – no human is born without one. I believe that you love someone not because you are attracted to their intelligence or their cognition (although it might help) but because of something much deeper – you have some deep attachment to their nefesh, their soul. It can’t be explained and it isn’t necessarily logical. I have a nefesh. And even if my cognitive free will has somehow been dislodged my nefesh free will has not and I use this part of my brain to make my decisions and so far it has done quite well, even if at times it has felt if something is absent. And because this part of my brain is working just fine, I am very much human.
Therefore, in conclusion, I do have free will – although its shape might be different from others because it is based on my nefesh rather than cognition. However, I will fight on eating virgin oil, flaxseed and cream in abundance on the ketogenic diet trying to obtain the cognitive free will that I desire and I will let you know what happens.
Sharon Ross, a keen blogger, is about to start the ketogenic diet. In this blog she recaps over her story so far and discusses her first appointment with her nutritionist and neurologist.
My name is Sharon Ross and I have an unconventional type of epilepsy and I am going to start an unconventional type of l treatment for it. I have frontal lobe epilepsy – sometimes it seems like I have dementia and my neuropsychologist said I have similar symptoms to someone with traumatic brain injury or who has suffered a stroke. My memory, processing, decision making and problem solving are poor. I used to look at a weather forecast and wonder why anyone was interested in them – lots of numbers and pictures in a graph seemed dull. But now I realise that people take an interest because they need to decide what clothes they should wear or how the weather will impact on their day. However, I can’t translate the information on the chart into what it means for me because my mind is a constant fog. Thus frontal lobe epilepsy is not a pleasant condition to live with and I want, indeed need, to find a cure. The brain fog is caused by irregular epileptiform activity and although my medication is treating the atypical seizures that I was having the epileptiform activity is still occurring. I have tried lots of medications to control it but they haven’t helped so in the next few weeks I am fortunate enough to be starting the ketogenic diet and I am writing a blog so that you can join me along my journey.
The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that is a recognised treatment for epilepsy. Much of the data regarding its efficacy comes from studies in children, but there is now a growing body of evidence for its use with adults. The exact mechanism of the ketogenic diet remains uncertain. The diet provides fat as an alternative fuel source for the body, producing metabolites called ketones and other associated biochemical changes can reduce seizures and control epileptiform activity..
Before I went to my first appointment at the hospital I already knew quite a bit about the diet and how I thought it would impact upon me. I am married with three young children, one of whom loves foods high in carbohydrates, especially jacket potatoes. The ketogenic diet is not a healthy one and my family cannot go on it with me so I know that managing my family’s eating requirements and my own at the same time is going to be tricky. I live about an hour away from the hospital which is useful, but I also know that often the dietician will catch up with me over-the-phone, so the distance is relatively inconsequential. Because I am ill I don’t work, but I see this as a plus because it means that I can devote time to planning and cooking meals – you need to make time for this diet to work.. As I said my illness means that planning, and indeed most things are difficult for me. Therefore I have a secret weapon – my mum. Everyone needs a good mum when they are going through a hard time and I am very fortunate enough to have one. My mum has therefore ‘volunteered’ to help me with the planning and preparation of meals – not for the rest of my life – but just until, hopefully, my brain starts to function as it should and then I will be able to do it by myself.
I am also an observant Jew. Before the first appointment I thought the fact that I already take food with me when I go out on day trips when I know that I won’t find food that fits my dietary requirements would be helpful but I learnt that being kosher is not a benefit on the diet. Being kosher means that I do not eat food derived from a pig or shellfish and I do not mix milk and meat together in the same meal. This is a problem for a Jew on the ketogenic diet because a traditional ketogenic meal is essentially treif (unkosher) – the suggested week’s meal plan I was given has for example dishes such as chicken breast topped with cheese AND bacon, sliced ham with side salad as well as prawn mayonnaise. Treif is high fat and therefore good for the diet. But I have my second secret weapon – Facebook. I have found a few kosher, vegetarian and vegan ketogenic Facebook groups and I am hoping they give me inspiration for non-treif ketogenic dishes.
My first appointment at the clinic took place with a dietician and a neurologist. They told me a bit about the diet, some of which I already knew and were honest about improvements I was likely to see – 40-50% of patients of patients will have an improvement to seizures after three months and on average seizures will reduce by 50%. They also said that they would be monitoring my overall health throughout because nobody wanted one illness to be treated but to be replaced with another (for example I had a blood test to measure my cholesterol level – if it is high I will not be allowed to go on the diet because it could cause heart problems). I also have to complete a highly detailed three-day meal diary which includes brand names and exact quantities of the food that I have eaten so the dietician can assess my current diet. I think the main point of the meeting was for them to outline how challenging the diet would be and then for me to go home and think about whether I really wanted to do it. The diet is not going to be easy and you would only do it if you were desperate and I am desperate.
The next stage of my journey is an info-half day with other people also starting the diet at the hospital. I will spend the first week acclimatising to the diet and then I will start in earnest. I will let you know what happens.