Using Keto Nutrition for Childhood Epilepsy with Sonya Reynolds

Sonya keto in epilepsy

Using Keto Nutrition for Childhood Epilepsy – With Sonya Reynolds

In today’s episode, we chat with Sonya Reynolds, a Nutritionist and Mother of Imogen, who has a rare form of epilepsy called ESES. Listen to Sonya and Imogen’s journey through diagnosis and medical treatment and discover how keto nutrition and some targeted other therapies changed the life of a little girl and their family.

About Sonya Reynolds:

Sonya is a Nutritionist and Life Coach with over 15 years of experience in the natural health profession. Sonya has worked in sales, customer service and Practitioner Educator roles at some of Australia’s leading supplement companies. She currently sees clients in private practice at Studio You in Sydney’s Birchgrove as well as online. Sonya has a passion for supporting families with children with Epilepsy as well as those with additional needs.

Connect with Sonya:

Website: www.studio-you.com.au/sonya-reynolds

References from Podcast: 

Transcript

Introduction

Andrew: This is “Wellness by Designs.” I’m your host, Andrew Whitfield-Cook. Today we’re talking with Sonya Reynolds, who is a nutritionist and health coach. And she’s also the mother of Imogen or Imi, who has a rare form of epilepsy called ESES. We’ll get Sonya to discuss all of this, and we welcome Sonya Reynolds to “Wellness by Designs.” How are you, Sony?

Sonya: Thanks, AWC. I’m really well. Thank you. I’m excited to be here.

Andrew: For everybody else out there that doesn’t know me as well as Sony knows me, all of my friends call me by my initials, AWC. That’s AWC. Not AWK as everybody keeps spelling it. No ORC despite how ugly I may be. But, anyway. Sony, welcome to “Wellness by Designs.” How are you?

Sonya: I’ll try and say Andrew through the conversation, but I can’t promise anything actually.

Andrew: Don’t worry about it. No, it’s fine. We’re here to discuss Imi and how your perseverance and dedication to her health really changed her outcome. But we’re going to be discussing keto nutrition mainly but also delve a little bit into another component that you’ve used. Is that cool?

Sonya: Yeah. Yeah, I would love to talk about it.

Andrew: We’ll keep it a secret. Okay, so, first, Imogen’s story, she was a normally developing little girl, the apple of her father’s eye and your sparkle in yours. What changed and when?

Imogen’s Normal Development

Sonya: So, yeah. Imi was born neurotypical, as I like to say, and what happened was at the age of 3, she started to fall over all the time. And I thought, “Oh, what a little klutz like, she must be a bit klutzy like me.” And then one night, and I know it was a Saturday night. I had people over, and I was cooking dinner, and she was falling again. And I said to Tim being the nutritionist, “She must have low blood sugar.” And then the next minute, we looked at her, and her eyes were rolling back inside the back of her head, and they were going over and over and over again. And then she’d come back and look at you and talk, and then she’d go back into what’s called a myoclonic seizure, which we didn’t know at the time. And she just kept having hundreds and hundreds. And the fear that your child is dying in front of your eyes led us to call the ambulance, and, you know, I thank God they were there within, you know, three minutes. But no one could tell us what was happening. It wasn’t an obvious seizure. And then it took a few hours at the hospital for someone to transfer us to a kid’s hospital, and then the next day someone said to us epilepsy.

Andrew: Right. But they would have suspected epilepsy because of the symptoms that she was exhibiting, right?

Sonya: Yes.

Andrew: So did…they would have offered some ameliorative medicine in the ambulance by the paramedics. Is that right?

Sonya: Yeah, yeah. Look, I didn’t go in the ambulance because I have another child, Scarlet, who was 1 at the time. So I had a baby, and I had a 3-year-old. So Tim went. And what had happened was by the time I got to the hospital, I still remember watching a pediatrician standing on the side of the bed and just literally watching her have what we now know is seizures. So they absolutely gave her something to slow them down. But that was still happening.

Andrew: Wow. Okay. So now you said that the next day they mentioned the word epilepsy. But at that stage, it was just generalized, not ESES.

Sonya: That’s correct. So, initially, she was diagnosed with atypical rolandic epilepsy or rolandic epilepsy, which is a childhood epilepsy. They did an MRI, and there was nothing there that they could see that could be causing seizures. And, you know, the fact that you can say, “Okay, great, my child doesn’t have X or Y,” is a relief. But the shock of having your child diagnosed with something that I still find not a lot of people know about or I certainly didn’t know a lot about it. I remember you know, hearing about it and thinking, “Wow, that sounds really hard. I don’t want to deal with that.” But when it’s placed in front of you and it’s your child, you just do whatever you have to do to support them.

Andrew: That’s an amazing flip, though, and I totally agree with you. Like, I have heard of, you know, other parents, some close to us, that have gone through real, you know, difficulties with their children and things like that. And we just think ourselves so lucky to have, you know, our beautiful boys, now men, but the fortitude that parents have to go, “We change, we turn, we pivot, you know, we do whatever has to be done to help our child,” is amazing to me, absolutely amazing.

ESES Epilepsy Diagnosis

Sonya: I think what happened was because Imogen was so sick, and you were mentioning this, so basically what happened was we onboarded some epileptic medication and was sent away. But then what happened was the seizures were getting worse and worse, more and more frequent. And we were brought back in for an EEG overnight. And what they found was the rare epilepsy syndrome called ESES. And that’s the electrical status epilepticus in sleep. And basically, what it means is that there’s continual seizure activity while the person…it’s subclinical. So we were putting her to bed, but her brain was always in a seizure state basically.

Andrew: Yeah. But these seizures flowed on over into wakefulness. They weren’t just flowing through the night.

Sonya: Yeah. So she had both. She had atypical rolandic epilepsy and the ESES. So she had two seizure types. And the reason ESES is a real problem is that what happens is those seizures are happening when the brain should be repairing itself in non-REM sleep, and that’s when it repairs itself and when it regenerates and when you learn. So what they find with these kids is that they’ll usually be diagnosed around 3 years of age, but it’s around that 5, 6 years of age where they get the neurodevelopment issues.

Andrew: Okay.

Sonya: So, at 5, she was nonverbal, back in nappies, completely, yeah, having thousands of seizures a day.

Andrew: Yeah. Can I ask about, you know, there’s another rare form of epilepsy, but it’s B6-dependent epilepsy. And the interesting thing is that they trial an absolutely huge dose of vitamin B6 in these kids. Was that ever suggested to you?

Genetic Testing

Sonya: So we did genetic testing. So there are two answers. The first answer is no, but I ended up using B6 for a number of reasons. One of the medications that she was on, called Keppra, depletes B6. But also as we know as clinicians that B6 and magnesium and zinc will play really important roles in converting glutamate to GABA, which is the more calming neurotransmitter. So the answer is I did use B6. No, I wasn’t prescribed it. No, we weren’t prescribed it. And they did do genetic testing, which, interestingly, at the time, we were in such shock that I don’t even remember this information. And it was only recently that the genetic testing department at Sydney Children’s Hospital actually contacted us to have a follow-up assessment because of where Imogen has landed currently, and we’ll talk about that. But basically, Imogen had a genetic duplication on one of her X chromosomes. And they found that some people can have neurological impairment with this genetic material, but some people don’t. So we did have genetic testing to rule out B6-dependent epilepsy.

Delving into ESES Epilepsy

Andrew: Gotcha. Right. Okay. Can we go a little bit further into what ESES is and how it presents in at least most people? Maybe Imogen was, you know, typical or non-typical.

Sonya: So what it means, as I was saying, it means they also have the epilepsy league basically say now that they prefer the language of continuous spike and wave. So when we’re talking about the spike, that’s an epileptic activity. So what its definition is that over 85% of non-REM sleep has this spike and wave continuously. And what happens is they suggest that even a percentage of 50% of spike and wave in sleep is enough to cause neurodevelopment issues. So it’s a significant amount of epileptic activity happening while they’re asleep.

Navigating Medications

Andrew: Yeah, gotcha. Okay. And can you go a little bit further into your medical journey or Imi’s medical journey? What happened with the medications that she was trialled on, how they worked, and how you navigated everything? And then after that, I’ll get into when you brought on nutrition as a sort of mainstay of treatment.

Sonya: So, as I said, one of the reasons why we originally got the EEG to find the ESES was that she was having multiple drug failures that the usual standard treatment for childhood epilepsy was failing. So we were looking for answers. They were looking for answers. So we went down that pathway. And then we were quite devastated with the ESES diagnosis. We knew it was rare, but the very little information that you can find, it’s all about regression, neurodevelopment, mental regression, and intellectual disability. So we were really fearful of that. Basically, we used over six different medications, sometimes at the same time, Andrew, and it makes me sad now. But we were so scared, and the seizures were so uncontrolled. And she had multiple seizure types.

So one of her seizure types was she’d literally drop to the floor, would be part of her seizure. And she had to wear helmets. They have little epilepsy helmets to protect their heads. So we were just doing whatever we were told. But in the meantime, you know, we had this child that was extremely difficult to handle, not sleeping. We used steroids for two years because there’s only very set protocols for ESES. So one of them is steroids. Another one is IVIG, so immunotherapy with IgG, excuse me, immunoglobulin G. And why they do that is they wonder if there’s an infection component to this condition. But basically, everything failed. We never got to…we probably reduced the seizures by 50%. But we never ever stopped her seizures. And it went for years on end.

So we started the keto diet two years into our epilepsy journey. And the reason being was that we just weren’t getting the seizure control. And as I said, my daughter ended up becoming nonverbal and backing nappies at 5, So the people that were willing to do something like a…you know, and I’m talking about eight years ago. There wasn’t as much information in Australia, in particular, around the ketogenic diet or the support for it. So we were really pushing, you know, what was the boundaries of what the hospitals were willing to do. But thankfully, at Sydney Children’s, there is a keto support team. So we started that purely because she had so many seizures.

Andrew: Gotcha. Can I backtrack a little bit about drug failures? How do you know when a drug is failing or when it’s just all you can do for an epileptic condition?

Sonya: This is exactly right, Andrew. So, in a sense, part of having refractory epilepsy is that you’re having multiple drug failures. And, yeah, the fact that A, they knew she a condition that is very resistant to treatment, which is the ESES. So they knew that. But also the other way that we knew it failed was that potentially all that mood, lack of sleep, you know, your child putting on a lot of weight, and, you know, especially with steroids, what you’re seeing is that they’re just not responding and the seizures are still at a point where they could cause harm.

Andrew: Right. I see. Okay.

Sonya: And you’re right. Like, maybe we should have looked at it and gone, “Okay, this is the best it’s gonna get.” And we kind of did think that like, “Okay, this is where we’re gonna land. Let’s be on as less medications as possible.” But you’re not going to try things that are really hard until you feel like, “Okay, there’s no other way to go.” And, as I said, I think we were in so much shock and overwhelm and our daughter was so sick we just wanted people to tell us what to do. And when they just kept prescribing medications, we were like, “Well, it must be okay. We must have to do this.” But it was once we…especially me, I decided that there were better options or other options rather than just adding another drug. And they weren’t really any much more we could add on.

Andrew: Right. Okay. So, I mean, you were talking about just accepting what medications are given to you. But I think, Sony, that that’s testimony to your knowledge and your strength that led you to search. I remember you telling me a long time ago about Lorenzo’s oil. And that was one of the triggers in your mind that got you thinking, “There’s gotta be another answer. There’s got to be another way.”

Sonya: Yeah, and I think Australia is…I think it’s a different world now, I know, eight years ago doesn’t sound like that long. But I just feel like we get information so much more quickly now. And maybe that’s because of podcasts. But what I noticed now is keto is so much more well-known and talked about. And I feel like patients are being offered at hospitals and supported more. Whereas it really was me going on the internet and trying to find…and I still help lots of mums of kids with epilepsy. And we all do it. We get online. And to a certain point, I say to people, “Get offline as well.” But I think there is something in that, “Okay, well, this isn’t working. What are our options? What have we got to lose?”

Introducing the Keto Diet

And, you know, it’s so funny that the way that they use keto is this last line. I think there’s a bit more grey in there. I don’t think it needs to be black and white that it is right now, Andrew. Like, I think that there’s a lot more nutrition education that could go into supporting patients with epilepsy without having to go into that real, you know, especially a keto that’s used in hospitals where they’re using like 90% fat and they’re just not using enough protein with these kids.

Andrew: Right. So this is something that brings up a whole other area. They’re using the ketogenic diet in its truest or purest form. But is that suitable particularly when you’ve got kids who were on drugs which caused nutritional deficiencies and they are battling against neurodevelopmental issues as well? Is that diet the most nutritious for their long-term development, let alone short-term control of their symptoms?

Sonya: Okay. The first answer is, one, I think there’s so much benefit. You know, we know the ketogenic diet is anti-inflammatory for the brain. I think that it takes out a lot of those inflammatory foods like grains, like wheat. So I think there’s something in removing those and putting you into ketosis and the benefits for your brain. But where I feel it does fall down is the lack of protein. So I think that what they should be doing is using a modified Atkins style of ketogenic diet with these kids so that they’re getting the protein because a classical keto that they were using in the hospital is four parts fat to one part carbohydrate, one part protein. So when Imogen was on these for the first six months, her hair fell out in chunks, Andrew. And so I was like, “Surely there’s a better way of doing this.” And that’s when I went and researched the modified Atkins diet.

Look, I knew about it for weight loss, but I really wasn’t sure about it, you know, for kids with epilepsy. But even as recent as 2015, Andrew, was showing that the modified Atkins diet for epilepsy resulted in 48% of the people on it having reduced seizures. So those people that did the modified Atkins diet that had epilepsy, these children had a 48% reduction in their seizures. So it’s definitely…it works. It’s just that when they first found the keto diet for epilepsy, they found it by accident with these huge amounts of fat. And I just don’t think that you need to do that. Because as you say, they need the protein and a little bit of carbs for growth and energy.

Andrew: Yeah. For growth and development, yeah. So another point, you’re a nutritionist. You are trained in this. You are trained to think about a certain way. And you’re also trying to question certain, you know, dogmas of nutrition. How did you cope with instigating the Atkins diet with Imi and as a family but compared to or contrasted to your patients who have, you know, a far lesser knowledge of even basic nutrition? How do they cope? Like testing ketosis, how do you know when Imi’s brain is controlled?

The Healthy Keto Option

Sonya: You have to teach everyone. Yeah. You’re right. I still had to learn a lot with the ketogenic diet. It wasn’t something that was trendy or, as I said, years ago, it really was cutting-edge. So I had to learn it. And eating in a ketogenic or high-fat fashion without just eating loads of butter, bacon, and, you know, all these really high-fat inflammatory foods, it’s actually learning how to eat in a high-fat style of eating that is healthy. So things like coconut milk and coconut oil, avocados, nuts and seeds, yeah, are a better way to go. So what I do with clients is that I teach them what the good fats are so that they can use them. And then I get them to learn how to optimize their protein because I think the key point is that they were always worried about giving protein, but clinically, and now the evidence shows that the protein won’t kick them out of ketosis. So I think there’s absolutely a way of having more fat and more protein in your diet but doing it in a really healthy way, but yes, people have to learn all this stuff, Andrew, 100%.

Andrew: And I wonder if that ability to handle a little bit more protein might be also in part due to the developmental stages. So, for instance, a growing body needs that for muscle building, whereas a sedentary…like a lot myself, doesn’t necessarily need that much protein.

Sonya: You know what, Andrew? I actually disagree with you. I think that you do need a good dose of protein, about 30% of your diet. So I think that that could still be pretty clinically relevant for you.

Andrew: I think the problem, Sony, is that I eat 190% of my body requirements, daily requirements, that’s the problem. I love food.

Sonya: I’m not putting you on keto, by the way. I’m not telling you to do keto, yeah.

Andrew: Now, I did also have a question, and it was more of a statement actually about you said that Imi, you know, regressed to wearing nappies and things like that, and I just was wondering about do we need to make the point for our viewers, our listeners out there that this isn’t because they were a naughty child, this is because there are nerve impulses affecting the normal propulsion of fecal material through the gut, correct?

Sonya: So, basically, it was neurodevelopment, yeah. So where her seizures were was in her language and memory, so she just couldn’t remember, so things that she had learned, she no longer remembered. I’m sure neurologists could explain it way better than me. But one of the markers and something just came to me while you’re talking, one of the markers that we knew keto was working when we started the keto diet and the food that we had to give her was barely edible or, it was so gross, but we were looking at it like it was a medication, and that’s what the doctor said to us, you know, “Use this as a medication.” But the better that she got, the less she drooled, the more she started to reject the food like, “What are you giving me?” Like, she was more of this world, and that’s why…

Andrew: Oh, that’s beautiful, of this world.

Sonya: Yeah, honestly, she came back to us. I just, yeah, I did feel like I lost her. And part of it was that she started to say, “You know what? I want to eat what everyone else is eating or whatever.” So that’s why when we transitioned to the modified Atkins, it was about palatability and her actually eating the food because there’s no point eating a certain percentage and then she never eats it because then that’s not gonna do what we want either.

Andrew: And you mentioned a few high-fat foods, but what about things like fish, good fats, nice protein?

Sonya: Yeah, go ahead.

Modified Atkins Diet

Andrew: Did you find that that was part of the modified Atkins diet? And did that work? What was her acceptance of fish and…?

Sonya: Oh, Imogen has always been a great eater. I can remember when people talk about fussy eaters, not Imogen. She’s always loved food. She still sits up, and if I serve her anything, she’ll eat it, not even a question. So she was really good that way. I didn’t find that that was an issue, and she ate coconut cakes and, you know, almond meal, cakes, and biscuits. I think we’re so lucky now, Andrew. Like, we’ve got so many more resources. I remember, and I don’t know if you know as well, like, when you were going gluten-free 10 years ago, or 12 years ago, it was really hard. There wasn’t anything out there. Whereas now there’s aisles of gluten-free.

Andrew: Yeah, that’s crazy. I was just going to go back to a point you also mentioned that you were lucky that the Sydney kids hospital in Randwick has a keto support group. Now, obviously, there are hospitals out there that don’t. Does this hospital offer any assistance to other medical facilities to say, “Hello, we’re here? We can offer assistance”? Do they help other satellite people?

Sonya: I honestly don’t know. I don’t know. But, you know, they’re trained dieticians who specifically work with the ketogenic diet and modified Atkins diet. So there was a long waitlist just to get into the Sydney Children’s support team, but I’m not sure if they’re helping outside of that.

Andrew: Okay. And are they accepting of, you know, in the…I mean, the proof of the pudding is Imogen’s health, but are they accepting of a modified Atkins diet now? Or they’ve just come on board?

Sonya: Yeah, look, when we pushed for it, which was over eight years ago now, they were open to trialling it and seeing if it worked. And the conversation was, “Well, if it doesn’t work, then we’ll just, you know, up the fat and reduce the protein again.” So they were really flexible in that way, and, you know, there’s real life, there’s what they say to do and then there’s the real life of living with the child and getting them to eat a certain way, going to all the kindy parties with my keto cake. You know, there were a few parties where I made keto cakes, and all the adults tried it and were really impressed with me. The kids just looked and then went, “What the hell?” So I think there’s real life, and then there’s what’s in the literature, right?

CBD in Epilepsy

Andrew: Well, there’s real life. And I’m gonna ask you a question. I’ll leave that question to later. But, first of all, I want to get on to another ingredient in Imi’s treatment, which has a very tainted legal history. Tell us a little bit about CBD.

Sonya: One of the reasons we decided… So we were at the point where we were doing keto for a year and a half. We did it two years in total, but we’re at a year and a half, and my youngest daughter who was 3 at the time started to reject food that she thought was keto-friendly. So I’d say, you know, “Eat some nuts,” and she would be like, “No, that’ll give me seizures.” Because part of our languaging, and I regret this, but you’re just making it up as you go along, was we would say, “You know, eat this. It’ll stop your seizures.” So when Scarlet saw the same food, she’d be like, “I will get seizures.” So we started to have some really complicated relationships around food in my house, and I’m like, “Okay, what’s next?” And what was happening around us at that time was Charlotte’s Web. So if anyone remembers, there was CBD or medical cannabis, which is hemp. And what they found was this little girl had a particular strain called Charlotte’s Web, and she went from having, you know, I wanna say hundreds of seizures like Imi to virtually none.

So this all started to come onto our radar, and then her seizures were still, you know, significant. So the ketogenic diet had reduced them by 50%, but they’re already hundreds and hundreds of seizures, Andrew. So even though they were reduced, we were still managing them, and she had the ESES. So one of the points was, “Well, these kids with rare epilepsies seem to do well on CBD.” So I went to my husband and said, “I think we should give this a go now.” We had brought this up a year earlier with our neurologists, and they said to us, “You know, you’ve got to be careful that you don’t give your child schizophrenia.” And we were like. But then, as we know, the research is actually showing, no, it won’t do that. And it’s about that pure THC by itself. The thing about hemp oil is that to be classified as hemp oil, you need 0.3% of THC, and there’s no way your child’s going to get high from that amount. Yeah.

Andrew: Forgive me, at the beginning of our conversation, I said Lorenzo’s oil. It’s not. It’s Charlotte’s Web. I remember saying that to you. I don’t know, it’s a different neurological disease, forgive me. So…

Sonya: I think Lorenzo’s oil was the ketogenic diet, though, so you weren’t wrong.

Andrew: Oh, was it? Okay, we’ll leave it in.

Sonya: We’ll leave it in.

Andrew: So tell us a little bit more, though, about procuring hemp oil and what it meant for Imi’s development and things like that?

Sonya: So we went and found some, and I was always very mindful that this is a drug and that it will influence Imogen’s brain and will have interaction. So when people were like, “Oh, just don’t grow some and make your own, or you can get some from X, Y, and Z,” I was never interested in that. I always treated it as a medication, Andrew, and I think it’s really important for anyone that uses even a natural product, it can act like a drug in the brain, so you’ve got to take it really seriously, any supplement, right?

So, for me, I took it very seriously. At the time, we were approved for the Epidiolex trial, which was the CBD, which came from a plant but was just a singular CBD. But we declined that trial because we believe in whole-plant cannabis. What that means is that you get the CBD, you get the THC, and you get things like terpenes and, you know, phytonutrients that basically act as an entourage effect, so enhance the ability of CBD to reduce seizures. And what you find is that you need far less of a whole-plant cannabis than you do have of a singular, and you also find that you don’t get the same amount of side effects as well. So lower dose, less side effects. So they were my very important, you know, criteria when looking at what I was gonna use with Imogen. And, you know, Andrew, a 2019 Canadian study, God bless Canada and their CBD, showed that whole-plant cannabis improved seizure control more than a singular.

Andrew: Yeah, Professor Simon Eckermann of Wollongong University did a great, I’ll say, interview, but it was really a talk. He was so excited he didn’t stop talking. But there’s a really great interview that I did with him at the 2019 United in Compassion Cannabis Conference at Tweed Heads. And he was speaking about the various cannabis products and how important it is to have the terpenes and the other cannabinoids in there. Obviously, THC is a concern when it’s too high and when you want CBD as the active. But there are actions, you know, that require a higher THC level as well. The issue is what are you getting? You know, I totally hear what you’re saying about if you get it off the street, “Was it made OMO in the water? You know, what drugs? What pesticides? What else was in the water that was filled in that plant?”

Sonya: Yeah, organic.

Andrew: All the nutrients. Yeah. So we’ve still got major hurdles to go with regards to control and then even understanding of the plethora, the legion…

Sonya: It’s very complex.

Andrew: …of different products out of the market. Yeah. And I guess this is where doctors get scared.

Sonya: Totally. That’s something really interesting that I’ve been chatting with a client with at the moment. They’ve been prescribed CBD whole-plant, and it’s a full spectrum one, so it’s got all the cannabinoids and terpenes, etc., as described. And what they found is that the dose they’re giving is way too high that they’ve needed to bring it down. And I know, just for Imogen, we half the dose of her CBD when we used a full spectrum to one that wasn’t as good…looking back, wasn’t as good quality. At the time, we got great control, but when we hit that sweet spot with this CBD, her seizures stopped in 2017. So four years ago, her seizures stopped. So after a significant amount of time on the CBD and getting the dose right, the seizures pretty much stopped. And then in September 2017…sorry, August 2019, her EEG was no longer ESES, and we weaned all her meds. So one and a half years ago, we weaned all meds. And Imogen actually can only remember one seizure, like the experience of it, and she doesn’t have a memory of it. For such a severe syndrome, obviously, there’s that memory loss. But…

Andrew: That was actually going to be a question…

Sonya: … to be cleared of epilepsy was just a miracle.

Andrew: Yes, absolutely. I was going to ask you about that. I know she was a very young girl at the time, I get it. So the chances of remembering a seizure are very slim anyway. But you said she’s got a memory of one seizure. What’s her memory? What happened? What does she remember of the seizure? Is it the before and after or during?

Sonya: The drama. Yeah. The before and after, and an ambulance came, and then this happened, you know, like a girl…

Andrew: But nothing new.

Sonya: …yeah, the drama, the story, but not the seizure. And, as we know, you don’t remember seizures, but, yes, for all the trauma, and I’ll be honest that, you know, Tim and I experienced a lot of trauma around watching our daughter have hundreds of seizures. You know, she doesn’t have it, which is great. I don’t want my child to have trauma. But, yeah, I think that’s the thing that I’m happy about. But we talk about that one seizure. You know, every month or so, we talk about it again.

Andrew: So moving along now to Imi’s current state. I was gonna say state of mind, but that’s too much of a pun. So her state of being. With regards to what’s happening with CBD now, the access that you can get, how much is it? Because this was one of the issues that I just couldn’t get my head around some people, but you were telling me something different, that it’s actually far more accessible and affordable now.

Sonya: So when we first started, CBD was over $1,000 a month that we spent on CBD for my daughter. So over $1,000. So she was severely…you know, she was in a severe stage at the time. But, yeah, it was a lot of money, and it was a big commitment. But, you know, the people that were going searching for CBD were the people that had the really sick kids and would do anything to help their child. So you’re gonna spend the money, aren’t you, Andrew? Like, you’re gonna find the money.

Andrew: Yep, yep, and they kind of broke the law on about being a criminal as well. You know, it was just who’d care? And that was a bad thing about our government that it just…

Sonya: We are on the Special Access Scheme for CBD. So we went through a GP who is an authorized prescriber of CBD, and she helped us get approved. So we had to go for approval for CBD, and it took a few weeks’ time because we had to have multiple doctors vouch for us that Imogen needed the CBD for her functioning. So it’s a lot less now, but we absolutely believe in people accessing the best quality cannabis and going through a doctor and having it prescribed, which is why I said, you know, you need to treat it like it’s a medication, it’s a drug. So that’s why I always say, you know, find someone. And that’s where United in Compassion can really help because they can help people, you know, access resources. But I’m an advocate for CBD, but I don’t say that it’s for every epileptic child. It may not be relevant, but for the right kids. And it isn’t a miracle. It doesn’t work for everyone, but for the right person, it works, and I’m really very thankful that we do what we did.

Imogens Bright Future

Andrew: And Imi’s development now, how is she going? And what’s for the future now for Imi?

Sonya: So she was diagnosed with a moderate intellectual disability in March 2019. And what that means is that she’s 12 and a half, and she’s learning to read and write. But she’s this amazing, bright, funny, you know, teenager. She’s about to turn 13 in October. I’m getting emotional here. So, you know, I’m so proud of her. We don’t know what the future holds. There’s really not a lot of evidence there. I think the great thing about the internet now is that we can join support groups and find other people whose children have the same condition as ours. But I’ve also been a bit protective of her and us and just look at what happened. We never knew where her epilepsy, what was going to happen, when she was so sick, and we never knew that she’d be able to even talk to us again, Andrew.

So to even have a child who goes to a dance class or who learns to ride a bike was so significant. And things that sometimes parents take for granted, you have to be really thankful for because, yeah, you didn’t know if your child was even gonna live or have a good life, let alone be able to ride a bike. So, yes, she’s got an intellectual disability, but she’s our hope. You know, just like anyone, they’ve got wants and needs and a very special person, and she gets a lot of support. So thanks to the NDIS she has twice-weekly OT, occupational therapy, twice-weekly speech therapy, and she’s in a special needs class in a high school, a public high school. So she’s got a lot of support around her. But she did a DJ camp in the school holidays and created her own techno music, Andrew.

Andrew: Sony, that’s fantastic. I mean, it’s so wonderful to hear about…I mean, I know you’ve been through hell and back to hell and back with your journey, but the valuable lessons not just that you’ve learned for yourselves as a family but how you help others now, I think it’s absolutely wonderful. It’s a testimony to…I’m gonna get teary now, to your love and dedication to your daughter. And I just can’t thank you enough for taking us through…oh, man…Imogen’s and your journey today on “Wellness by Designs.”

Sonya: Thanks, Andrew.

Andrew:  Thanks so much for watching and listening today. I’m Andrew Whitfield-Cook. Bye for now.