Alex: took our son's blood sugar level at various times during the day and then adjusted the diet to make it stable across the day. And what I mean by stable is a stable amount of weight, weight and ratio of grams of fat, protein and carbohydrate for every meal, but then also making sure that his blood sugar level therefore is stable across the day. And as soon as we did that, seizures stopped.
Voiceover: Welcome to the Doctor's Kitchen podcast. The show about food, lifestyle, medicine and how to improve your health today. I'm Dr Rupy, your host. I'm a medical doctor, I study nutrition and I'm a firm believer in the power of food and lifestyle as medicine. Join me and my expert guests where we discuss the multiple determinants of what allows you to lead your best life.
Dr Rupy: A slightly different podcast episode for part two of the keto series today. I really want to give an authentic human experience of what effect the ketogenic diet could have in certain circumstances. And today we're talking about Alex Ash's experience. He's a colleague of one of my best friends in America who initially reached out to me a while ago wanting to share his personal experience with the use of ketogenic diets for his son's medical condition. Lennox-Gastaut syndrome is a severe form of childhood epilepsy with multiple types of seizures, as you'll hear. And Alex and his partner's experience has not been a straightforward one in the slightest. And for any of you listening with children or with or without chronic condition, I just want to say from the outset that this episode could be quite triggering. So I'd definitely exercise some caution if you do not want to listen. Alex's story has a positive ending, but I understand that this is not the case for a lot of people struggling with epilepsy or many other conditions. And as a medical doctor, I merely witness the daily battle that many parents and carers have to endure for the sake of their loved ones. As always, none of this information spoken about today is to be taken as medical advice. Always speak to your practitioner and changes to medication, dietary or supplement regimes do need to be discussed with them. And there were a few explanations for how the ketogenic may yield an effect that were offered by Alex that are not technically accurate, but for the purposes of this special podcast, I've chosen to completely unedit our conversation and just leave it in its most raw form because I really want you to experience Alex's raw passion for this. And if you're interested in the more nuanced opinion from a practitioner, I would definitely listen to the previous episode with Sue Wood. I'm not going to say much more. I hope you enjoy listening to Alex's story, tell Jaken's story, I should say. It certainly hit home a lot of truths to me and I think you're going to find it useful and it will give you a different perspective on lifestyle medicine and the grander mission of the Doctor's Kitchen as well. Enjoy.
Dr Rupy: Alex, thanks so much for joining me on the podcast. It's a pleasure to speak to you. We have a mutual friend, Nuan, also known as New on because he rebranded himself when he went to America. But we were connected by one of my best friends and I heard about your story and I really wanted to share it on the podcast. So thank you so much for jumping on.
Alex: Thank you very much indeed for having me on, Rupy. It's great to be here.
Dr Rupy: Yeah. So why don't we kick off by you perhaps introducing yourself, your story, where you're living right now and and why you moved from the States and and we can just start off.
Alex: Yeah, thank you. Happy to start there. So, yeah, I'm Alex. Recently returned to the UK last November after a number of years in the Bay Area in the California, in California on the West Coast. I was living there with my wife and my two kids. We moved back, as I said, last November. And ostensibly the reason we moved home was because of the ill health of my youngest son. His name is Jaken, he's now four years old. And really the story with Jaken began probably when he was about eight months old and he started having these very strange nighttime events, which we took him to a number of doctors for different opinions over in the States and we were, you know, at very kind of world-renowned medical institutions like Stanford and and UCSF Benioff. But this was really strange. He was, as I said, eight months old, started having what appeared to be some kind of parasomnia events, but continued and he would have atrocious sleep. Now, I know a lot of parents complain about lack of sleep, but I can tell you this was something else. I mean, he would be up screaming for most of the night and obviously as a parent, you try and rack your brain how, you know, you kind of breastfeeding to to sleep, that would work for five minutes. We tried everything and sleep doctors, different specialists, none of them could really determine what was wrong with him. We knew there was something wrong with him. Meanwhile, actually, he was growing fine. Generally speaking. So he was, you know, his markers in terms of development, height, weight, cognitive, motor skills were all seemingly kind of continuing on a on a good trajectory. But we were falling apart. I was trying to hold down a quite a high pressure job as a management consultant. My wife couldn't work because she was just so consumed by by our youngest son and obviously our oldest son was kind of losing out because we were so focused on the health issues. And that really lasted, believe it or not, this kind of cadence lasted for three years or so, just a bit less than three years. And April 2018, things took a really horrible turn for the worst where he had his first kind of known seizure. And this was a kind of drop seizure. So he was just painting, it was about I think 10:30 in the morning, he was painting or something like that, some activity at his little table and he just fell off and smacked his head on the floor. And he and, you know, I was travelling for work at the time, so it was a really awful situation and I flew back as quickly as I could to to help. But essentially, you know, they did an ECG and not an ECG, I've completely forgotten my, it's been so long since I've been in a neurologist clinic, I've forgotten all my terminology for brain scans. But he had he actually had a CT scan because he had a really bad bump on his head and they did all the tests and, you know, confirmed that he'd had a seizure. Now, the way that they work in the States is they don't diagnose epilepsy until they see, I think it's three examples of seizures at which point they'll they'll say, okay, we have to do something. Unfortunately, he then had, several months later, he had two further incidents, very, very similar. One pretty much exactly the same type of scenario in the morning, similar time, drop seizure. The other one was a sort of halfway type seizure in a shop where he just fell over. He didn't trip or anything like that, but again, we were able to confirm that that was a kind of seizure. So this was like, we we suspect he was having seizures before this in the nighttime events, some kind of focal seizure. Then obviously this was a new type of seizure that was manifesting.
Dr Rupy: Alex, just before we can, we we carry on because I know you've probably regaled this story in your head a whole bunch of times, but after the first seizure where there was an EEG and there was a CT head to make sure that there wasn't any traumatic damage or intracranial issue, when you were discharged from the hospital, what was the explanation and what was sort of, what were the next steps given to you?
Alex: Yeah, so we were, the next steps were, okay, this is very concerning for you, but kids can have seizures for a lot of different reasons. It could have been because he had a fever, fever-induced seizure. It could be a lot of reasons, but we, like I said to you, their kind of metric for taking this more seriously is when two or three happen within a relatively short time frame. We did get a referral to a neurologist and we did follow up, but it was a similar, it was a similar message. Let's let's keep an eye on it and let's see what happens moving forwards. Now, we'll get into shortly when I start to explain how things really ramped up in a in a terrible way in 20, sorry, late 2018 and 2019, how things could have been done differently in my view, especially as it relates to diet and dietary intervention earlier. We'll come to that shortly, but if I'll just tell you the kind of arc of the story. So through to, so fast forward to the end of 2018 where we had three known events and the neurologist at the time we were seeing at Stanford, she, she basically said, look, we've had these events now, it's time to put him on medication. And she prescribed a drug called oxcarbazepine, which for those who don't know it is a pretty hardcore drug for anyone to be on, let alone a young child. Obviously, they they the dose is set accordingly, but it's still a hardcore medication. So we we we were in a a real state by this point because we were so tired, all all the stuff that had been going on at night times was still going on and obviously just anxiety and all those things. So we kind of kick ourselves for not pushing back a little bit more strongly at this point, but it is what it is. He was placed on this drug and what we saw was quite quickly his behaviour deteriorated. And what do I mean by that? I mean his irritability, like very heightened irritability. I mean, he was already sleep deprived, right? So that doesn't help things. But the drug was clearly in our mind a correlation between him titrating on the drug and then getting very irritable. There were these events like in the middle of the morning, always 11:30, where he would go kind of crazy. But generally speaking, he was very tired, very irritable, quite aggressive as well towards his brother, which is not really a trait in his character, it never has been. So we were really concerned, but the neurologist said, hey, look, just persist and you'll you'll get through it. So, you know, of course, you listen to the expert, right? The so-called expert. So, so we carried on, we persisted. And then things somewhat stabilised and I don't know whether that's just us normalising to what we were seeing every day as opposed to him actually becoming more stable. So then we move into, so that's the start of 2019. And now we move into June 2020. So June 2020 was a really, really bad turning point for us. Jaken started to develop a new type of seizure, myoclonic seizure. And my wife who is a neuroscience researcher, as it happens, you know, she picked up on this really quickly.
Dr Rupy: Hold on, your wife's a neuroscience researcher?
Alex: I left that bit out, yeah.
Dr Rupy: Yeah, that was quite a big part of the story. I had no idea. I thought she was perhaps in the similar profession to you. So she's a neuroscience researcher and and now I need to go back a little bit more. What was sort of her experience throughout the point up until now? Because obviously she knows a lot of the stuff, she'd probably did a lot of research herself when she can understand perhaps the rationale for the anti-epileptic medications. Did she have any particular fears at this up until this point?
Alex: Absolutely, absolutely. A lot of concerns and again, this comes back to we beat ourselves up a bit about this because we were in, this is kind of years of build up of the problems with our son, going from pillar to post with different doctors, not getting to the root of it. Being very, very sleep deprived, just tired, not really being as rigorous as we would ordinarily be in terms of questioning things and and pushing back on the doctors. And now we look back and we go, God, why didn't we do more? And you know, the the the thing is when we eventually got our act together in 2020, like we were super on it and my wife was, she has access to all the literature. And it got to the point and I don't want to get ahead of ourselves, but where we were actually bringing medical literature to the doctors, to the so-called experts and saying, hey guys, you said, you pushed back on us and said this is not the case. We've got medical literature, we've reached out to the researchers in France, for instance, where we one study that we paid very close attention to. It was actually a study on oxcarbazepine that clearly showed that there's a big issue with kids going on oxcarbazepine and seeing behavioural changes. And where you see those behavioural changes, the type that we were reporting very actively to our neurologist, you really need to wean the child off the drug because it's a short step to a much worse situation, which is exactly the path that we went down. And so, but anyhow, I mean, so yeah, we we were lucky in that my wife's very, very well, she's done a lot of research around Alzheimer's and the role of diet in Alzheimer's and and carbs and sugar and all of that stuff. So she, yeah, absolutely, she, you know, she has access to the literature. So we were pretty fairly well educated, but even, even then, and you know, we I explained all the situation with our fatigue and stuff like that, you're dealing with a medical establishment which I've lost a lot, sorry to say this because I know you're a doctor, but I've lost a lot of respect for because it wasn't just one doctor, we went to four different neurologists to try and and and get better advice. And, you know, like I said, these are world-renowned institutions and we we really struggled, but you're you're dealing with people who, again, sorry to generalise here, but they supposedly know a lot more than you and therefore they they any kind of questioning is not taken very well. So there's that kind of, we had this tension repeatedly with with the doctors and and actually I'll just kind of fast forward the story a little bit to give you some more examples. So on set of myoclonic seizures in June, horrendous EEG that just could not believe what we were seeing. They were moving towards a diagnosis of of LGS, Lennox-Gastaut, which is probably the worst possible diagnosis you can get from a, unless you're born with Dravet or something like that, LGS is pretty much the the worst syndrome, epilepsy syndrome you could you could get. And so that obviously sent us into a tailspin. And then we went through, so the June, July, August period of 2019 was just unbelievable for us. So many ambulance trips to the emergency room. Jaken had a new type of seizure, you know, the the tonic-clonic seizures started to develop. Now, what we noticed was that the the the doctors started chopping and changing the medication. So the oxcarbazepine,
Dr Rupy: Alex, just before you go into that, just for the listeners, I just want to make sure that we're all up to date with the types of seizures because it sounds like Jaken was having a variety of different types of seizures and you've mentioned a couple, myoclonic seizures and the tonic-clonic seizures. Do you want to just briefly describe what the myoclonic seizures looked like?
Alex: Yeah, for sure. So myoclonic seizures are considered, they look quite innocuous if you, you can easily miss them, but actually they're considered one of the worst types of seizure and not, so when you get to that point, things are really bad. So myoclonic seizure manifests as a sudden jerk movement. It can be your arms kind of go up by your side, your head can kind of drop forward, your shoulders can can move and it's an involuntary movement because of the electrical impulses going on inside your inside your brain. So you can quite easily miss them. Now, what comes along with them, you think, oh, it's quickly passed, but actually it's not. The build up to the seizure is horrendous. Like Jaken was just, you know, this irritability that I described and the upset, like you just couldn't, you couldn't calm him down, you couldn't soothe him. So that's the build up. Then he, you knew a seizure was coming and then the seizure would pass and then the aftermath was like this, you know, post-ictal state where completely out of it and and then eventually they kind of come around. Now, imagine that happening to your kid and in the morning, that would happen 20 times before he would get up out of bed. Wow. You'd take him to the bathroom, another 10. Go downstairs, 10 more, right? We had, at times we were up to 100 a day, myoclonic seizures. So that became like the most dominant seizure that we were seeing was this myoclonic seizure. And what what the, with this with this manifesting, our neurologist told us to take out oxcarbazepine straight away because we presented this evidence to her and she was, she then, right, we have to take it out straight away. And like we were like, I can't believe we're giving you this, you didn't know this and now you're telling us to take it out. Is it safe to take, take him off just like that? And of course it's not. Again, you read the literature, you can't just do a sudden immediate wean off oxcarbazepine. So, anyway, so then we was on to our next drug. So the next neurologist that we went to see said, right, Keppra, try Keppra. Keppra is a very well-known anti-epileptic drug. And for some people it works, right? Or but actually, if you look at statistics, for 30% of children, these anti-epileptic drugs do not work. That's a huge number. 30% of all kids that are placed on anti-epileptic drugs, the drugs don't work. And if you fail one drug, the likelihood of you failing another increases exponentially. So we went on to our, so they were like, okay, well you need to try two drugs. So we've done the oxcarbazepine, here's some Keppra. Keppra, our son went psychotic. And I don't use that word lightly. He was like a crazed animal. And it happened within a day of going on. Now, believe it or not, the doctor, the new doctor said, we actually had to take him to the ER, we said we can't control our son. We don't know what to do with him. He's just, and he was, the all the nurses in the ER could see that how he was behaving, but you know, they just thought that's, you know, actually the doctor came in and said, well, he could just be behaving that just could be how he behaves normally. I'm like, no, that's not how he behaves normally. That definitely isn't, trust us. Anyhow, he suggested low dosing the Keppra. So we stayed in, we stayed in hospital and they did this rapid titration and we were very nervous about doing that because of the effects that we'd seen, but this doctor was like, this is the only way to find out whether Keppra will work or not properly. So he did a huge load dose in hospital. And then they read the EEG and the EEG miraculously had calmed down. So this doctor was like, I told you so, right? Go home. So we went home and the day later he developed a new type of seizure, which was the tonic-clonic. Now, the tonic-clonic seizure is probably the seizure that most people think of when they think of epilepsy because it's the most dramatic one, right, in terms of what the body movements do. And so I was putting him down for his nap at lunchtime and he literally his body just kind of lift, he was lying on my chest and when he started having it, his body just lifted up off my chest and his eyes rolled back in his head and it was just honestly the most frightening thing we'd ever seen. And we had all our emergency seizure medication to administer. You wait five minutes, you count and then you administer it and it he was out for the count for for over five minutes. So we administered the medication and then we have to call an ambulance. We called an ambulance and thank God we had an Australian ambulance driver in California, would you believe? And we told him our story and we said we didn't want to go back to the hospital where this doctor had plied our son with Keppra and it and we were like, this stuff is, this is horrendous. So we ended up, he he agreed to take us to a different hospital. We were happy about. So we ended up in UCSF in San Francisco. A bit more of a sort of a team of neurologists who would listen to us a little bit more closely. But it was there that they did more EGs and there where they categorically diagnosed him as having LGS, Lennox-Gastaut, which again, for those, I should have said earlier, generally Lennox-Gastaut, the outcomes are, there's no good outcomes. Generally what you see is is a deterioration and some people, I don't know what the statistics are, a worrying amount of people end up as, you know, basically being handicapped in various ways and not living, not living a particularly content existence. And so we were staring down that barrel with that diagnosis. But at the same time, it just didn't feel right. Our son, not withstanding all his issues that he had since he was a kid, up until even March of that year, he was a bright kid, he was above average in terms of the way he was talking, his vocabulary, the way he was interacting. And that was the thing that always baffled the doctors. This kid was always hitting his markers, if not exceeding them. And this just really, and we'd seen this mental disintegration and because what came with the seizures was not just the actual seizures themselves and the behaviour, but he just disintegrated mentally and cognitively and he was started to behave like an autistic, a child on the autistic spectrum. And we were just going, how can this happen so quickly? How in the space of a few months can we see this horrendous deterioration before our eyes? Something just doesn't add up, right? And so then what the doctors did at UCSF was they said, okay, we're going to stop Keppra. We're going to try another drug. So then they tried another drug, a Japanese pioneered anti-epileptic drug called Zonisamide, which is another crazy mind-bending drug if you read about it. And so the doctor's like, I'm confident that we're going to see some improvements here. So he went on to Zonisamide. Similar thing happened again, right, that we saw with the Keppra is this stepwise, as he, because you don't just go on to the full dose straight away, you go on to it gradually over the course of a couple of weeks. But as he went up on his dose, there was a corresponding increase in the number, the frequency of seizures he was having. And we were just saying to the doctor, guys, these drugs are not working, right? Everyone we're trying, whether it's making our son psychotic, it's all of them are increasing the seizure load. And they were like, no, you have to wait it out, you have to wait it out. Gave it a bit longer, nothing getting better. So you imagine by this point, this is around about August 2019, that we've had four neurologists we've been through, a diagnosis of the worst diagnosis possible of LGS, our son having hundreds of seizures a day, it was truly awful. So, then the light, sorry, I haven't painted all that, that kind of horrendous picture, there's a major, major light at the end of the tunnel.
Dr Rupy: Forgive me for for interrupting again, Alex. I just want to double click on what it was like for you as a family at that time, because this is, you know, the summer of 2019. You're on these different medications, you've been taken off some, put on some, titrated on some, all that kind of stuff. What was it like at home? And and forgive me for for prying, you know, with your personal family life and stuff. And especially as you had another child as well, who who's how old, sorry?
Alex: Two years older, so he's six at the time he was five when this was all kicking off.
Dr Rupy: Yeah. I mean, look, it was brutal. It was the most challenging period of my life and I could not, I wouldn't wish it on my worst enemy to to to go through what we went through. Home was, I just to give you a little window into it, it was just surviving. It was counting seizures. We were keeping logs of of seizure counts, when they were, did they correspond to anything, any particular time of the day? Could we see patterns that, you know, maybe around 11 o'clock when blood sugar levels were low or just after when blood sugar levels were, just all these things we were trying to see patterns. The only way we could do that was by gathering our own data. So we'd take breaks, you know, like my wife would supervise, then swap over with me and we'd literally be logging down on our phone or on a piece of paper seizure counts. It was horrendous. And then at the end of the day, we'd just be like a debrief on how bad the day was. And this just went on and on and on and on. And that really was our life and we were struggling to just about get our son, our older son to school, get him fed, bathed, clothed. We had so much incredible help from our support network. You know, even though we were a long way from our family, we had incredible neighbours who yeah, were just, you know, just went above and beyond and and and friends as well. I also forgot to mention, now that I mentioned neighbours, a really awful thing that happened that you just when you think you can't, things can't get any worse. On one, one day, my son was, my youngest son was playing with his older brother and they weren't playing very much at all because it would degenerate so quickly. But they happened to be playing and my youngest son somehow was running downstairs and had a seizure and fell through a glass door. Oh God. So we ended up in hospital. That was actually before we ended up in UCSF. So this is going back a bit, but this was, yeah, he ended up in hospital, he had, I can't remember how many stitches. Luckily he missed a nerve, he had to have an operation to repair it, but you can and he has a bleeding disorder. So really, oh my word. You could not, you could not like script a worse situation than what we were facing. It was, the mind boggles. I was starting to,
Dr Rupy: Yeah, I was going to say, yeah, I was just going to say like, how are you going to work and you know, were you worried about like the responsibility you had, like dealing with your, and also, just to add to the equation, you know, a lot of the listeners are from America, the majority of listeners from the UK where we have an NHS healthcare system. So you also had to contend with the fact that you're dealing with a private medical system, which is costing you every time you you utilize it, I'm assuming, right?
Alex: Especially for emergency room visits, it was $250 or $300 for each visit to the emergency room and in June, July 2019, there were multiple trips. So, yeah, I mean, you know, from a work perspective, I was fortunate, the company I was working for at the time, Deloitte Consulting, were very, like super, super understanding. They had a great parental leave program. I also had incredible bosses who went above and beyond in covering my back, even when I was out with leave, they were just incredible. So from that perspective, I didn't have to worry about work. I wasn't doing any, that's for sure, for six, nine months. But I had my back covered by them. From a insurance perspective, I was lucky that we had good insurance, so it allowed us to get access to supposedly leading neurologists in the Bay Area. So that was less, less of an issue than it could have been. I mean, you know, really if you have, if you have poor insurance, medical insurance in the US, it's the worst. You really are in a very difficult situation. We were lucky we had good insurance.
Dr Rupy: And and what's Jaken like now? Like what's his life like? What's, you know, how do you normalise the diet and stuff? I mean, you mentioned like your wife's amazing abilities, not only as a professional, but also as a baker as well to to make food interesting and and delightful as it should be for kids. But yeah, what does the day-to-day look like?
Alex: Yeah, day-to-day, I mean, again, not withstanding the current environment, which weirdly enough, because we went through so much stuff personally as a family, we find the current situation easier to deal with. And it's a weird, weird to say that, but it just is for us because we've just been through the mill, you know, with our son's health. But he's fantastic now. I mean, it's just, everything is, you know, he's just blossomed so much. He's, you know, he's playing football every week. He's now at school. On the school front, he's actually because of the health issues, he's never really been to school properly in the States, it was sporadic. Over here, like the last academic year, he didn't go. So he's just really started for the first time at school. He's going in the mornings and then we're going to start sending him full time because that's a big adjustment. And the thing is as well, going back to those bloody drugs, one drug left, the benzo, but as I said earlier, it takes a long time to wean off. So we're, we've been weaning him off for 12 months and we're down to the very last small bit. So hopefully that will be done with by the end of the year, but you do still see his withdrawal symptoms have decreased a lot, so it's much, much better from a withdrawal perspective. But we we're still kind of taking it bit by bit on the school front because of the withdrawals and they're super understanding. So all in all, like it's just fantastic. He's, he's, him and his brother are like thick as thieves together, very close. Um, you know, it's it's really great and it's just again, think think back to where we've come from, it's it's crazy. Um, and everything, you know, his path forward from here is very positive. You know, the neurologists like to point out that there are other vulnerable ages for kids in their brain development, especially like around pre-puberty and then late, kind of late teens tend to be two vulnerable periods. So, you know, we'll never, our guard will never be down, but I think we'll keep, all of us will will kind of gravitate towards the high fat, low carb diet and and going forward and so we're hope, we're pretty confident that he's going to be absolutely fine.
Dr Rupy: And what's the community been like? Because I'm sure, you know, you've engaged in forums, you've probably heavily involved in discussion groups and and how you found out about all these different issues in the first place. So what is that, what is that like? Is it, is it inclusive? Can it be quite restrictive sometimes? Like what's your experience been of it as a parent?
Alex: No, no, actually, the the the most amount of help and empathy, but just practical help and advice comes from other families. Like again, the doctors are so far removed from the day-to-day experience of the drugs, the diet, they really don't know what's best. It's right, you know your kid best and families who are going through a similar experience, that's who you learn most from. So we've tapped into those resources in, in the UK, there's something called Matthew's Friends, which is an organization, there's the Daisy Garland, and these charities do phenomenal work, the Daisy Garland trains dietitians for the NHS, like the more of these keto specialized dietitians we can get out there, the better. So these charities, these are the two charities that are very helpful, they're very supportive, they'll give you as much or as little support as you like. They send you hampers with, you know, low carb, high fat food in with utensils, kitchen utensils, which are very useful for like spatulas, little mini spatulas. They're the most useful kitchen implement you could ever have, that you have to have, rather, if you're, if you've got a kid on this diet. So they do all of that and it's it's really great. And then actually, I'm not a big social media head myself, but Instagram, Instagram parents, kids with on keto, the parents there, they post stories, photos, incredible recipes, a mine of information. And actually that's social media at its best, I think. Yeah, we've found.
Dr Rupy: I agree. You know, social media has got a massive bad rap and you know, with with reason as well, like totally with what's happened over the last few years, but there are some positive elements of it and that's definitely one element, I think. I think we need to be better filters for social media. You know, in that context, it's great. You have a community that's supportive, showing recipes, resources, etc. But, you know, if you're, if you're not careful, you know, all of a sudden you're being shown conspiracy theories and all the rest of it. So, um, yeah, no, I I I think it can be a force for good. And and I I wonder like on a day-to-day, do you check blood sugar levels and keto levels or are you quite happy with the current combination of 2. 2.5 to one?
Alex: We used to. We used to do it every day, multiple times a day, the urine sticks. But it's just clockwork. He we are we were so lucky. Our son, I mean, he's the hero in all of this. He really is because he he adapted to the diet really quickly. So again, I said earlier, families have difficulty with the regime and a lot of that's to do with changing your kids' diet, getting them used to it, they push back. We were so lucky. Our son just accepted it more or less from day one. And then again with his ketosis, it's just been super stable. So we would do this the whole time, especially in the early months. And then we've not done it for, we've not checked his levels through, through the urine sticks for, I don't know, since since probably February time. He's had blood taken in in hospital because they want to make doubly sure, but we're not concerned at all. He's so stable. That's immense. We've had no ketoacidosis issues or anything like that. So we're again, lucky that we've not had that. He's just been super, super stable and super tolerant. And the other thing is, the other incredible thing about him is he knows, he knows exactly what to do when his meal arrives. He's like, doesn't complain, he eats it all. He knows he has to eat every morsel on the plate. Every bit of MCT oil, you have to have every last drop. Every bit of, he has like this, we make him, his milk is actually double cream mixed with water. Every last drop, spatula it out at the end, has to all go in. And he knows that and he does it.
Dr Rupy: That, because that's a, that's a, I'm really glad you brought that up because that is a huge, huge thing in all of this. People don't realize that it's not just a case of getting the right regime, it's actually implementing the regime. And when you're implementing anything with a child, I mean, I have patients, I work in paediatric A&E, I have patients who can't give their their antibiotics or their their, you know, simple paracetamol to their kids because they will just refuse it. So introducing a diet that needs to be consumed every single day to the drop, that is a huge, huge barrier for a lot of people.
Alex: It is. Yeah, and like I said, I think that's where the people who unfortunately can't succeed with this diet, that's the main reason for it. And it's easy to say, oh, you just have to be persistent, but it's really tough. And a lot of the families we're in touch with, you know, speak very eloquently about how difficult it's been to to change their son's diet. Yeah, I mean, again, it's just luck. We have, we have a child who has adapted so well to it. If it was, trust me, if it was our older son, it would have been a completely different story, completely different story. So you're thankful for small mercies. But yeah, he just, you know, he just knows, he tells us what to do. He'll go, you know, mama, dada, I need help with the spatula, kind of thing. Like, I can't get the last drop out, help me, kind of thing. He's pushing us to to finish his food. So, yeah, it's great. It's amazing.
Dr Rupy: That's brilliant. Alex, I just wanted to say, I'm really thankful that you reached out and Nuan, Nuan, put us, put us in contact because, um, I think sharing these kind of powerful stories is just like a reminder of just how impactful food can be and how important diet is and how important culinary medicine education is for all medical practitioners, not just doctors, but nurses and and everyone who who has any experience with patients. So, um, thank you so much for sharing your story and what you guys have bravely fought through as well is just hopefully going to pave the way for a lot more families. So they don't have to have the same battles.
Alex: Yeah, absolutely. And I appreciate you inviting me on and, uh, talking about this, obviously brings up a lot of emotions, but I find it's kind of cathartic and also, I feel strongly that, you know, if I can contribute in some small way to trying to change things a little bit or at least people can feel like there's a, there's another good story out there and there's, there's hope if they're in a situation like we've been in. And then also just to, uh, thank you for the role that you're playing in also trying to shift the mindset of people around food and the importance of it to, um, to health and well-being.
Dr Rupy: No, my pleasure, man.
