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Navigating Epilepsy with Sonya Reynolds

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Navigating Epilepsy with Sonya Reynolds

What would you do if a loved one was diagnosed with Epilepsy? This is the reality of today's guest, Sonya Reynolds, a nutritionist and mother of two, who's eldest daughter was diagnosed with an aggressive, and rare form of epilepsy at age 3.

Today Sonya shares some valuable insight into the nutritional and integrative interventions her and her family have explored alongside medical treatments in their quest to give their daughter the best possible quality of life. Sonya also provides some context into supporting parent's who are in-turn supporting ill children and also a window into the future of medicinal cannabis for epilepsy.


Covered in this episode:

[00:46] Introducing Sonya Reynolds
[01:46] Becoming a nutritionist
[03:10] Curveballs: an epilepsy diagnosis
[09:21] Epilepsy: polypharmacy
[12:26] ESES: Electrical Status Epilepticus in Sleep
[15:49] Alternative treatment options
[17:48] The value of a ketogenic diet
[25:06] The opportunity of Medicinal Cannabis
[26:54] What have been some of the best interventions?
[33:57] Working in tandem with medical experts
[35:22] Sonya's hopes for future integration

Andrew: This is FX Medicine. I'm Andrew Whitfield-Cook. 

Joining me in the studio today is Sonya Reynolds. Sonya is a nutritionist with over 10 years industry experience. Throughout her career, Sonya has held many roles including sales, customer service, and practitioner education roles, for one of Australia's largest nutraceutical supplement companies, all whilst running her own clinic called The Right Bite in Sydney's Inner West. 

Sonya has a strong interest in the areas of detoxification, gastrointestinal, and digestive disorders, and in particular working with children with special health needs. A passion I believe is born of circumstance. As a busy mom of two beautiful young girls, Sonya has also been on a personal journey treating, researching, and understanding the therapy options for epilepsy, following the diagnosis of her eldest daughter, Imi. And today, Sonya is kind to share these insights with you, our listeners. Welcome, Sonya to FX Medicine.

Sonya: Thanks, Andrew.

Andrew: So I think we need to begin with where you started as a nutritionist. Why? And then, can I ask, how did you feel when, you know, I guess there's this affront when we think we're doing everything right, and then suddenly we have a child, and there's an issue. How do you feel with... How did you go with self-blame? That's sort of stuff...

Sonya: Yeah wow. You've asked me a big one. 

Andrew: Yeah let's jump...

Sonya: Yeah, let’s jump in. 

To answer the first part of the question, "How did I get into the industry?" I had a quarter-life crisis, as they like to say it. Which I now know sounds very naive.

Andrew: Is that where you get V Dub Beetle? 

Sonya: Yeah, no. It's when you decide you wanna become a natural health practitioner. So I studied to become a nutritionist with a naturopathic point of view. And, you know, I had all these dreams of what I was going to do and who was going to treat, and I remember very specifically hearing about epilepsy when we were studying, and I thought, "Oh. I don't even want to listen to that. I'm not going to get into that. Like, that's too hard." Like, it just sounded too hard, and I really... That memory became very crystal clear in my mind when my daughter got her diagnosis. So it's just funny how life happens. 

Andrew: Yeah. Curveballs.

Sonya: Curveballs, but that's okay, we can hit those. 

So basically Imogen was diagnosed at three and a half, so it's called a sudden onset epilepsy. And the night that it happened, she kept falling over all the time, and people think that epilepsy is a tonic-clonic, or what we used to call a grand mal. Which is now called a tonic-clonic. But it's not. There's lots of different forms of epilepsy, like an absent seizure. One called a myoclonic drop, so your eyes literally go into back of your head and you drop. So she was having those, but we were, like, we'd never seen anything like that before, and then basically her eyes just kept flicking in her head, and she'd come in and out of it. And I called the ambulance going, "There's something happening to my baby, like, she's dying. Help me."

And they turned up. We're so lucky that we live in, you know, close to a good hospital in Sydney, and they were there within three minutes, so I wouldn't get off the phone because I said she's dying in front of my eyes. So no one knew what it was... No one was saying it was epilepsy because it didn't look like classic epilepsy, and we still didn't think it was, and then it was over time that obviously we got an EEG, and we did an MRI to make sure that she didn't have a brain malformation or something like that, or a cancer. And, yeah, I very much blame...well you potentially blame each other as well, your partner, like, "What did you do? What did... Look at your genes. Look what...look what your family did."

Andrew: But it's reasonable. It's reasonable to do this. And, you know, resentment for, let's say a partner who smokes, and sudden infant death syndrome for instance, or other adverse issues. So I think that's reasonable, and I think it's not talked about enough.

Sonya: No. There's a lot of blame, and I think there's a lot of grief as well, and I think that's what surprised me, is how much grief you experience when your child's life doesn't look like the way that you thought it should look. And that's okay, but grief is like a wave, and it comes and goes. And I think the longer that we've been on this journey, and I hate to say it that way, the more...the less you grieve, the more you accept, and the less you blame. Because it is what it is, and what's blame gonna do anyway. It's not gonna help you.

Andrew: But I think, you know, that, sort of, blame or resentment, it is a valid thing. I didn't throw in the flip for that, and that is let's say a male blaming their female partner for something like endo. It's no fault of the female, but it is also valid that the male has some resentment. How it's directed, however, ah, that's the trick. 

Sonya: Yeah and I think that's where couples may have, you know, have issues with having a special needs child because of that blame. So perhaps that's where some of those more complicated, and partners do break up in these situations, but I'm lucky enough to have continued my relationship with my husband.

Andrew: So did anybody heed those issues when these arose? Anybody in the health care system?

Sonya: I don't think anyone really talked us through that we were going to have shock. I think we were both in shock and disbelief. No one had epilepsy in our family. There was nothing that we... You know, I guess you think, "Oh well there's epilepsy in the family, perhaps you're not as accepting, but it mightn't be a surprise." Like, it just seemed so wrong, out there, just out of our realm, that I think shock, we probably weren't talked through enough that. 

But we were lucky. They did refer us to clinical psychologists, and personally, both my husband and I have seen clinical psychologists separately, and Tim's was very much dealing with the grief and anger. And, yeah, like, rage. About how our daughter's life, because she does have learning to live difficulties, and delays, when she was very sick, she was very, very sick, non-verbal, back in nappies. So I think there was a lot of anger around those times particularly, or when times are particularly hard, and you do take it out on each other. So, yeah, we've very much, you know...

Andrew: Employed the expertise of clinical...

Sonya: Yeah. Absolutely.

Andrew: So I'm glad that they were offered you. I was, sort of, getting the feeling...

Sonya: Oh, I'm paying for it myself, don't get me wrong. It wasn't put on a silver platter.

Andrew: Oh really? It wasn't offered as part of the... "Hey listen this is going to be something that you're going to work through. You might need some help here." That's a really interesting thing, isn't it?

Sonya: No. So, but, you know, thankfully we can go to a GP and ask for a referral as part of a mental health care plan. So that's what we both did.

Andrew: But you had to initiate that?

Sonya: Absolutely. Yeah. Good, good question.

Andrew: A failing of the health care system that they don't take, is that it's, kind of, like, there's the patient, I'm treating the patient. Everybody around them who is significant others can deal with their own sort of baggage.

Sonya: Yeah, totally. And I think something I wanted to say to you, was that we're talking about treating special needs children, but really my heart lies with special needs mums, who, you know, need support. And not even special needs mums, but mums. Like, they usually carry more of the emotional load and the household load.

Andrew: Very often more of the physical load.

Sonya: The physical load. So I think supporting these mums are really important. So I think that's a great question because, for me, part of my, you know, well-being, is to see a clinical psychologist to exercise a couple of times a week, and eat well, and when I try and follow those parameters, I feel better and can better support my family and my children.

Andrew: So let's delve into that. You’re a nutritionist. Let's talk about navigating medicine and nutrition in epilepsy.

Sonya: Yeah, really hard.. I think the first thing is that when you have a refractory epilepsy, that means that you're drug resistant. Two or more drugs haven't worked for you. So currently, Imogen's on three anti-epileptic drugs, and it's the side effects that you get that where naturopathy and nutrition really can come into play. 

For example, one of the drugs that she's on is called Keppra, and it's well known in the medical establishment that you get what's called Keppra rage. One of the reasons why I think you get this Keppra rage is because it depletes (vitamin) B6. So when you look, and it's very easy to find the evidence for it, is that it'll say, "Yeah. Keppra depletes B6." So there's no wonder these little people are feeling rageous if we think about how B6 works, as well as the other Bs as well. So for me, I think every anti-epileptic drug should be co-prescribed with a B vitamin, no question. I think that's a real means...

Andrew: There's certain ones with folate, like, you know, Phenytoin and sodium, decreases folate, but there's a titration issue there as well, isn't there? Because folate also decreases Phenytoin. 

So you have to balance both of them to get a therapeutic effect whilst maintaining the folic acid. I don't know about B6. I've heard of B6 dependent seizures.

Sonya: Yes there's also those, yes. This is separate to that, this is purely related to the Keppra.

Andrew: The medication.

Sonya: ...to the medication. 

Another medication is Lamictal, and basically, it can cause you to have less of an appetite, and it can cause wakefulness. So if you're taking it at night, then you're going to be wakeful, and then you're taking all these other drugs like a benzodiazepine to offset..

Andrew: Try and help you sleep. Poly-pharmacy and...

Sonya: Yeah fully. And it's like a slippery slope.

Andrew: But not just that, is it? You've got the flow-on effects of your carers as well so that the child is awake all night. The mother and the father, more likely the mother, is going to be then sleepless, sleep deprived, that has follow-on effects to relationships, to housework, to work performance, to everything.

Sonya: Everything. We had five years where she didn't sleep properly. 

Andrew: Wow.

Sonya: Like not a full night's sleep on and off, a couple of nights, and then a couple of nights. That wasn't related to the Lamictal. It was... Her epilepsy is rare because it's called ESES, and it's a continuous spike on waving sleep. So you're never going into that deep sleep. There's always those spikes. So it really... Over time I found what she needs to take to get that good sleep. But, yeah, there was a long time where we didn't sleep, and it was really hard. That's was probably the worst time.

Andrew: Now you have to explain Imi's condition. 

Sonya: Okay. 

Andrew: The proper explanation.

Sonya: So it's called a ESES.

Andrew: ESES.

Sonya: Yeah. Basically, it's continuous spike in wave, so to a layperson, the spikes are just continuous, quite... it's very aggressive, it's rare but it's subclinical. 

So when your child's first diagnosed, for example, with us, we didn't know she had this, but it would have been there. So initially she was diagnosed, and then when she started having language regression and behaviour regression, amongst other things, then they say, "Okay let's do a sleep-deprived EEG”, so you have to keep your kid up all night. Take them in, get them to fall asleep, do the EEG. Which gives them a seizure as well. So you've got a seizing child, keeping them up all night, and then you run this sleep deprived EEG, and it showed that most of her brain activity was epileptic, but you didn't know that because it's subclinical. So you don't see it till they go to the EEG.

Andrew: So ESES is electrical status epilepticus in sleep.

Sonya: In sleep. Yeah.

Andrew: Jeepers, you'd become an expert of acronyms, wouldn't you?

Sonya: Yes. So when you said explain ESES, I've decided that I wasn't going to say that.

Andrew: Well I just did.

Sonya: Yeah. Thank you.

Andrew: So B6 worked in helping her get better sleep from the medication?

Sonya: No. No, it helped... Well yeah, good question. Obviously, it would have because of the neurotransmitters that it would have helped support, but it's more about that mood and behaviour. 

Andrew: Right. 

Sonya: That's what it was...

Andrew: So it decreases the rage.

Sonya: Yeah. You know Epilim, for example, is really well known for aggression and behaviour, and we had Imogen on that initially, and it was probably the worst six months of our life. And we kept saying, "This isn't our child, like, this isn't right. Something's wrong." And they kept saying, "No, no, no, well you weigh it up. It's either seizures”, because she also had the daytime seizures as well as the ESES, “So it's your choice. You either have seizures or you have behaviour.” 

And in the end, I just put my foot down and I'm like, "I can't do this anymore." And we were seeing a child psychologist at this stage to help us with her behaviour. And they said, "Okay well you can try Lamictal." So we titrated down and up, and in that time they...you can get something called Stevens-Johnson syndrome. Which is the rash, the full body rash, so you have to be really cautious of that. But the change between my child on Epilim to my child on Lamictal is night and day. 

And so I really push for people to get off the Epilim basically because I just... It was awful.

Andrew: But it's their neurologist that will be in control.

Sonya: Yeah, look, it's that old school, you know, first line is Epilim usually as part of their treatment.

Andrew: Have you looked into other therapeutic options.

Sonya: Currently we're looking at the Special Access Scheme for medical cannabis. Unfortunately the process is very difficult and very expensive.

Andrew: To me it's rather a setup. It's rather a placation by politicians. Yes, you can get it, but no you can't in the end, anyway.

Sonya: Yeah. So you can go for a Special Access Scheme, which is if you're really...

Andrew: In need?

Sonya: In need, yeah. If you've got a refractory epilepsy for example.

Andrew: This is for the Australian health care system I might add, to our listeners, by the way.

Sonya: Yeah, but when you have to find a doctor that is willing to prescribe it. Because…. 

Andrew: And then, what is the education of those doctors? Who's educating them to choose the various cannabis product?

Sonya: Yeah, you tell me?. Yeah. 

Usually, the patient is expected or what I've been doing is, and I'm lucky that I'm in the profession that we're in, because I have taught myself. So I've gone and contacted the different businesses that have been approved by the TGA on the Special Access Scheme, then I've looked at the ingredients, and then I base my decision on that, then taken it to the doctor. 

But that's a lot of pressure on a parent to teach themselves and educate themselves, and then have the doctor to go ahead with it. But our doctor was very cautious about us using it because of the cost. It would cost about $1000 a month to treat my daughter with one of the cannabis products that's available in New South Wales at the moment. 

Andrew: That’s ridiculous!

Sonya: Yeah, so I've got to find a nice benefactor once I get through it all.

Andrew: Move to Colorado.

Sonya: I know. I've had that conversation.

Andrew: Or Seattle. 

Sonya: I've had that conversation.

Andrew: So on a serious note though, diet. Dietary intervention. Now, you know, ketogenic diet has been employed for certain forms of epilepsy

Sonya: Yes. 

Andrew: How did you employ it? How well did it work? And did you run into any issues using it?

Sonya: Yeah that's a great question. 

So the ketogenic diet is usually used as a last resort. The reason being is, it's so hard. Ketogenic diets are very trendy right now, which is great, but the ketogenic diet that we're talking about is not the same. It's very specific. It's four parts fat to one part carbohydrate and protein. You measure everything. Every meal is to this ratio, and you have to create a meal on a spreadsheet. So you don't just go, "Oh, that looks like four parts."

Andrew: That looks fun, yeah.

Sonya: "That looks good." You're using it like it's a drug. And for that reason, it's the last resort. Yeah. 

So basically, we had...Imogen had had epilepsy for just over a year, and she was regressing further and further, and none of the drugs were working basically. She was having daily seizures, the seizures were changing. We were getting everything from myoclonic to tonic clonics. It just changed all the time. 

She became, so as you may or may not know, there's damage to the brain every time you have a seizure, and she's got these continuous seizures in her sleep. So she became non-verbal, drooling, back in nappies, right before she was going to school. I look back now and I seem very naive, but I was quite determined to get her to start school, and go to a mainstream school, and get full funding. So looking back now, it's crazy, but the only way I was going to get my child functioning was on a keto diet. 

So we were enlisted in the hospital, and we did the strict ketogenic diet for six months, and we were able to get her to school and were able to get her functioning, out of nappies. She was still very low vocabulary, but she was functioning. The better she got, the more she rejected the food. 

But you can imagine that it's not that palatable. If you think about that much fat, you're thinking about a tiny bit of protein and huge amounts of fat. And the nutritionist in me was like, "I just don't think that's enough protein." And within that time, guess what? Chunks of hair were falling out of her head and, you know, for me it was a real protein deficiency, and I got further educated, as you do, and I found the Modified Atkins Diet for Epilepsy. So basically it's unlimited fat, unlimited protein, and limited carbs. So it's much more palatable, adaptive. You don't have to put everything on the scale. You know, I pretty much had to stop working within the time that we were on the ketogenic diet because it was all-consuming.

Andrew: Do you think that it was required to have Imi on that strict ketogenic diet in the interim stages, in the initial stages?

Sonya: Yeah, I think that's a really good question. I debated that with the neurologist actually, whether we needed to have done the keto diet to get her to the place where she was. Because obviously, she was so sick. And he said, "I used that diet because I knew it would work quickly and most efficiently”. 

Because in my mind you're turning off a lot of people from this diet, doing this. I think it's old-fashioned. I would be inclined, and if this was my patient, is I'd say start on the Modified Atkins Diet, see if you get some seizure reduction, and then you can add things like MCT oils which is a medium chain triglyceride.

Andrew: Triglyceride. Okay.

Sonya: Triglyceride, which is used like a carbohydrate. So it's really important when you're on a restricted carbohydrate diet that you are getting the energy from somewhere else, and that's why these kids are really lethargic. So for me, a key inclusion, which they don't always do, is that they need to have MCT. And the reason they don't include it is because it can give you diarrhoea. Yeah, it can. If you go really high dose really quickly. So start low and titrate up. 

So really small tweaks, I think could be made to make it less scary and and less hard, but it is difficult. Going to kids parties, when have you seen a carb-free kid's party? Nightmare. I used to make ketogenic cakes. "Yay, come to my party." And the kids will be like, "Meh." And the adults are like, "Ooh, I quite like it." 

Andrew: That's really interesting.

Sonya: Yeah, the parents quite...well I think, you know, they were being kind as well perhaps. 

But, you know, we're lucky that we're actually in this day and age, where coconut oil is easily accessible, coconut flour, what else? Stevia. Things like that that you can use as a sweetener. So I think it's easier now to do the ketogenic diet or modified Atkins diet than ever before. 

But for me, I think that they really need to look at the diet that they're promoting in the hospital because they're telling you to use margarine, and lots of dairy, and I just think there is better nutritious ways to up the fat content in a diet.

Andrew: And was it your neurologist who was supportive of the ketogenic diet?

Sonya: Yeah, because we basically had done everything else. So we'd done intravenous immunoglobulins, that hadn't worked. We'd done over four drugs, we would... She was not, yeah. So it's like the last resort, and he was very supportive.

Andrew: You know what's really interesting is that I was speaking with a GP who was talking to... No, it was a dietitian who was talking to neurologists attending a neurology seminar. And this dietician was speaking to them about the inclusion or the employment of the ketogenic diet, and they were saying, "No, we couldn't be bothered with that because it was too hard."

Sonya: I can see where they're coming from because it's out of their...

Andrew: So refer.

Sonya: Yeah.

Andrew: Refer to somebody that’s expert in it.

Sonya: So they will work very closely with the dietitian, and we did. But it is scary and a lot of parents are scared of it because it is a lot of work. And that's why my suggestion is, rather than going straight into the ketogenic diet, why not try Modified Atkins Diet? And when I went looking for the evidence, there actually is evidence that if you...when someone is first diagnosed with epilepsy, to check for allergies like dairy and gluten, and if you remove them, specifically gluten, you should see a reduction in seizures. So looking at gluten-free, dairy-free, low-allergen-type, you know, anti-inflammatory meals.

Andrew: And then the keto if need be.

Sonya: Yeah. So there are other things that you can do. And if you really look, which I have, there is evidence for it, but sometimes you don't need evidence. You should just try it and see how your kid feels. That's my opinion.

Andrew: So just going back to cannabis, you know, that you're looking into, and you've delved into the research, I get that we’re not there yet in Australia, and we'll talk about the association that I think we should be supporting, and that is United in Compassion.

Sonya: United in Compassion. Yeah. 

Andrew: What from your research, what kind of cannabis is applicable for epileptic treatment? There's, you know...

Sonya: As in CBD?

Andrew: Zillions on the market.

Sonya: Yeah.

Andrew: So it's CBD you're talking about specifically? And are you talking about in exclusion of THC?

Sonya: Justin Sinclair has spoken so eloquently on FX Medicine, and I've listened to his podcast, and it's about using the whole plant because there is that entourage effect. And what I find interesting, is in the Epidiolex trial, which was on Dravet syndrome, which is a very aggressive epilepsy. There was over 79% of respondents had adverse events. So I wonder if they'd had a whole plant, that had the modulating effects of that trace amounts of THC, if they would have had as large adverse events? So I think that's something I'm really interested in, and I know United in Compassion is interested in that as well.

Andrew: Okay so not to slang off about Epidiolex too much, it had some benefit, right?

Sonya: Yeah. Look they did see a 30% reduction in seizures, so there's definitely a place for Epidiolex, no question. But for me, I would really like access to a whole plant.

Andrew: So what other things, let's say the legal things, that are available in Australia. What things did you employ that were of use to Imi's therapy, indeed her progression? And can I ask a point about what things did you find of no value, or indeed might have had a reversed impact on Imi's progression?

Sonya: For me, what really affected Imogen and her aggression was the polypharma, the multiple drugs, and their side effects, and navigating that and removing them.

Andrew: Chasing your tail.

Sonya: Working out which drug is doing what was really difficult. And what I found frustrating, was no one wanted to admit that it was the drug causing the side effect. It was something else. So that for me is really disappointing, and I've had to really push, like I said, to remove the Epilim because I knew it wasn't my child. I knew it was drug-related. 

So I think managing polypharma is very difficult. So what I had to do was find nutrients that wouldn't interact with the drug, like as you said with Phenytoin. She's not on that, but as an example. But also were going to help support her epilepsy.  

So really easy one, magnesium. They've shown that magnesium is lower in epileptic patients. This is easily accessible as well in evidence, I'm not just making this up. Yeah. Personally, what I found was when she was not on magnesium, her muscles were very tight. Like her little arm was just all seized in a sense. So now I use a really good dose, I use 300 to 400 milligrams of elemental magnesium.

Andrew: And what age is she?

Sonya: She is nearly nine.

Andrew: Nearly nine now.

Sonya: Yeah. So I find that dose is really helpful. I also put magnesium flakes in her bath every night, which has benefits for her little sister as well.

Andrew: Okay.

Sonya: And I like that, yeah, it's that transdermal absorption as well. 

I have thrown in an activated B now. So, activated Bs only really became available in Australia very recently. And I've noticed a huge difference. The point that people are saying, "Wow, what have you given Imogen that she's speaking so clearly and able to communicate?” Because she's still very delayed.

Andrew: Yeah. Yeah. But cute as a button, I’ve got to say.

Sonya: So cute. Mostly. And the activated Bs really made a difference, and I would suggest that's to do with methylation and detoxification. 

Omega-3s. I use a really potent EPA 500 milligram per capsule and over 250 milligrams of DHA.

Andrew: Now, you use a capsule, nine-year-old, no problems? They're rather big.

Sonya: So we've taught her to swallow capsules, Andrew. Yeah

Andrew: Oh, okay. Yeah. Yeah.

Sonya: Yeah, we started with lollies, I know, forgive the nutritionist. It was only a day or two, and then we switched it over.

Andrew: But there are some nice flavoured liquids out there now. 

Sonya: Yeah. That's true, but I just like the convenience of being able to put a capsule in her mouth and, it's because we're doing medicine three times a day. Whatever I can do to make my life easier. That's what I'm going to choose. 

Andrew: Got you. I get it, yeah.

Sonya: So it's not as potent as say, liquid fish oil, you're right. But, I think it's compliance and ease of administration. Works every time with children. So, yeah, look for other children that cant's swallow capsules, then you would do a liquid. 

But what they've found is that if your Omega-3 status is at a good level, then you get a better result from your B vitamins. So you get a better response from your B vitamins, so I think that's really important for someone like Imogen who potentially has that replication issue that they're getting the full effects of the B vitamins. 

And then, lastly, one of the ingredients that I love as well, and that I've been trying to take for my mental health, is L-theanine, or theanine. And that's because it takes you into that alpha brainwave state, so I found giving her theanine and magnesium before bed really helps calm her down. And then I also like to use probiotics.

Andrew: Yeah.

Sonya: I don't need to sell you on the gut-brain connection, do I?

Andrew: No.

Sonya: No, tick tick. So, yeah...

Andrew: But there's so much more coming out about, you know, this gut-brain, brain-gut interaction.

Sonya: GALT.

Andrew: Who's the controller of which?

Sonya: Yeah, that's right. So I think that's where the whole dietary related information comes into it as well because you want to take out what's potentially causing dysbiosis, and a leaky gut, and inflammation as well.

Andrew: You spoke about, you know, the interaction of the nutriment nutrients with regards to allaying side effects of medications. Where did you look for those? Were they readily found on MIMS, or did you use, like, for instance, one of my favourites is Yvonne Coleman, the Nutrition Consultants Australia book? It's like a folder. It's as thick as your arm.

Sonya: I haven't seen it.

Andrew: She's incredible.

Sonya: I want it.

Andrew: Well she's incredible, she does this... she basically attacks various pharmaceutical classes each year, and says, "Right, what’s the data on, you know, albumin binding, on transference on direct nutrient deficiencies caused by the medications." Common ones, for instance, is LCP.

Sonya: I think I was reading her this morning, someone sent a link out.

Andrew: Oh dear. Oh.

Sonya: So, yeah.

Andrew: Okay. 

Sonya: Funny.

Andrew: So Nutrition Consultants Australia, we'll put that up on our FX Medicine website, for a resource for people to link in, and they can buy that folder. It is so valuable when you're teasing out drug-nutrient interactions. How they play a part.

Sonya: Yeah, that's great. Look, I use a couple of resources when I'm looking at drug-nutrient interactions. I go to PubMed. I know...

Andrew: Yep. Doh! Number one...

Sonya: Go the source, yeah.

Sonya: Yeah. So I'll go there, and that's where I'll say sometimes, you know, the evidence is very easily found. Like you go to PubMed and put in ‘magnesium and epilepsy’. So, you know, going to the research that way. I use some resource books like Henry Oseikii, you know, he's got a great Nutrient Bible, and I look at the...

Andrew: And it really is a nutrient bible.

Sonya: Yeah.

Andrew: And it has been that for decades.

Sonya: Forever, yeah. And you know, I use IMgateway as well.

Andrew: Yeah.

Sonya: So I'll look around wherever I can.

Andrew: Sonya, just to wrap up you've seen major changes, major advances, in Imogen's behaviour, in her learning, her speech, her activity. What's the acceptance been by the medical team of your using nutritional interventions? And how has that changed once they've seen these benefits take place?

Sonya: It's complicated. They know what I do and they’ll say, "Okay, here's the supplement I want you to take." And I go, "Okay. I actually want to take this supplement. Is that okay?" And they’ll go, "Oh really?" I'm like, "Yeah this is better." And they go, "Okay." So then...

Andrew: It's got to do with their knowledge.

Sonya: Yeah, and that's fine. People think that certain brands are really great. They don't have my qualifications and my knowledge, but I really wish that neurologists would co-prescribe a good multi-vitamin with good  B’s to every single child that is on an anti-epileptic drug. I just think there's so many benefits, and there's very little cost, to help enhance their quality of life. I do tell them all our supplements. There isn't a lot of engagement, unfortunately. They let me do my thing.

Andrew: But it's your thing. They just...

Sonya: But it's my thing, yeah. But...

Andrew: Right. Can they not see?

Sonya: We have a great relationship with our neurologist. He's a great man.

Andrew: Ah, great.

Sonya: We do...but he lets me do my thing on my side, and he'll just leave me to it, unfortunately. But, you know, one day I would love to be the person there, you know, training neurologists saying, "This is what you could do. These simple tweaks to change these kids lives."

Andrew: Well we look forward to that day certainly. Sonya, thank you so much. 

Sonya: Thanks, Andrew.

Andrew: For giving us not just your expertise, but you care for your beautiful daughter, you’ve got to be one of the most fabulous mums on this Earth.

Sonya: Oh thank you.

Andrew: And well done for your perseverance, and indeed, I wish you luck, and I do wish you good fortune in the future in trying to access the cannabis that you want so desperately for Imi's benefit. 

Sonya: Thank you. Thank you for your time. 

Andrew: This is FX Medicine. I'm Andrew Whitfield-Cook.

Additional Resources

Sonya Reynolds
Health Space Clinics Newtown
Therapeutic Goods Administration: Access to Medicinal Cannabis products
TGA: Special Access Scheme (Medicinal Cannabis)
Royal Children's Hospital: Ketogenic Diet
Epilepsy Foundation: Modified Atkins Diet for Epilepsy
United in Compassion
Nutrition Consultants Australia
The Nutrient Bible

Research explored in this podcast

Devinsky O, Cross H, Laux L et al. Trial of Cannabidiol for Drug-Resistant Seizures in the Dravet Syndrome. N Engl J Med 2017 May 25;376:2011-2020


The information provided on FX Medicine is for educational and informational purposes only. The information provided on this site is not, nor is it intended to be, a substitute for professional advice or care. Please seek the advice of a qualified health care professional in the event something you have read here raises questions or concerns regarding your health.

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