9 - This Isn’t in the Textbook: Epilepsy, CBD, and a Mother’s Grit with Erin Oudshoorn.

What happens when your instincts whisper something the doctors won’t say out loud?

In this week’s episode, I sit down with Erin Oudshoorn - mother to the incredible Luella, and founder of the Lulu Love Project. Erin shares the raw and honest story of Luella’s diagnosis with infantile spasms at just 11 weeks old, and the years that followed - filled with uncertainty, exhaustion, and an unshakable drive to find another way.

We talk about what it means to follow your gut when the medical system says no, how Erin first turned to CBD in the face of resistance, and why trusting your inner voice might just be the most powerful medicine we have.

This is a conversation about grit, grief, and hope. About parenting in the unknown. And about listening closely—to yourself, your child, and the stories that don’t always make it into the textbooks.

Reach out to Erin:

@little.lulu.love

Connect with Kyla de Clifford
Instagram: @cannacuriousaus
TikTok: @cannacuriousau
YouTube: @cannacurious

If you enjoyed this episode, please follow, share, and leave a review - it helps the podcast reach more curious minds just like you.

Disclaimer:
We are not doctors, and this is not medical advice. Everything shared here is based on our personal lived experiences and the stories of others. Always speak with a qualified healthcare professional before making any changes to your health or wellness routine.

Transcript

Hi, Erin. Thank you so much for joining me on today's podcast. It's lovely to see you. You too. It's been too long. It has been too long. Now, I wanted to go back a little bit to the start just for people that may not know your story. If you can take us back to the early days because I know Lulu was just 11 weeks old.

when she was diagnosed with infantile spasms can you share some of that story with us yeah i mean it was such a shock to be honest when she was first diagnosed i started seeing these really small movements at around eight weeks of age um not knowing what they were um obviously never been exposed to uh infantile spasms before um and then um

She woke up from a nap and she just looked out of it. And for whatever reason, you know, my inner voice was just going, that's a seizure. And so, yeah, we ended up down at emergency and she was very, very quickly diagnosed by the neurologist. So, yeah, it's been a pretty rough ride.

Yeah, and it's a hard thing I think for a mum to, like you just went straight for your instincts, which is, you know, I guess happens to, sorry, And what do you, like, going back to that time, what do you remember about that time and about, like, how did you feel? To be honest, I've blocked a lot of it, actually, because it was just so traumatic to go from having this newborn baby and trying to find my place within motherhood to then being in emergency and being told that your child has a life-limiting condition.

um that is a neurological condition that you've really just got no idea about you know this is the stuff that they can never prep you for you know you can go to as many birth classes and all those things as you can as you want but they don't talk about disability and the array of different different things that can happen um you expect it to be

what they tell you it will be, which is have a baby. What the books say, right? You read the book and everything will be just perfectly fine, right? Right, exactly. And look, you know it's going to be challenging but not like this. And I just remember feeling just hopelessness, just utter hopelessness, that there was just no way out. It was so dark. And when you're confined in hospital and you don't have...

you know, they're talking to you in this dialogue that doesn't make sense. You know, they're talking to you in this doctor speak that you don't understand. Yeah, that's what I was going to say. Did it feel clinical? Because I, you know, I wanted to talk a little bit about the fact that I think a lot of people do feel that it is clinical, obviously, when you're in a clinical setting. But you...

You took yourself a little bit out of the clinical setting and I wanted to talk about what gave you the courage to consider trying CBD. Yeah. So, yes, definitely very clinical, you know, very textbook approach. And look, you know, I understand why they do that. That's what they're taught. You know, they've got these textbooks. They follow that. That's how they're trained. It's, you know, they are experts in their field. However, when you're dealing with a child like mine and there's around 30% of the epilepsy population who are like Luella where the seizures aren't, you know, kind of cookie-cutter straightforward where medications work, you know, we've tried and failed up to about 16 anti-epileptics and nothing holds.

So, you know, I think the first person to actually ask me if I would be willing to look into it was actually my dad. He kind of said, you know, what about it? And to be fair, I was kind of in the background starting to research it anyway. I was just so frustrated within the medical system that not only when I spoke to my neurologist and Aaron Luella's neurologist about...

CBD oil being a potential treatment I was point blank steered well away from it they would not even consider it I was told to be very very careful almost like it was dangerous you know like we're dealing with explosives here something to that nature it was just so um out of their realm and I think rather than just saying look there is anecdotal evidence

We don't know because we're not dealing with it here. Rather than just saying that and being honest about it, it was just like, no, no, no, don't go near it. And I think at that point that's what actually their limited, what's the word I'm looking for?

They were just so tied up in following procedure, following protocol, trying this med, trying that med, meds, meds, meds, meds. You know, she ended up on seven at one time, all at once. And she was just going into, you know, status epilepticus. Like it was just awful. And it was at that point that I just went, we have to try something else. And, you know, I went and spoke to Dave, my husband.

you know my he's a very pragmatic man you know he's very he's very you know kind of follow doctor's orders you know you don't really go against that and that's something that we're all kind of trained and in some ways brainwashed to follow you know we're told that doctor's orders and doctors know best but Sometimes they don't always, especially in really hard-to-treat cases like Luella. And so I started investigating and I think the first point of call was a mum that we found through Facebook and she had actually gone public about her son who devastatingly died from...

seizures uh but she she was very pro CBD oil as a treatment because it was somewhat working for him but you know they they couldn't get it they couldn't get supply there was so much red tape around it that um you know it was very challenging so that's that was kind of my first steps towards looking into CBD oil as a as a potential treatment option for her

I thought we might segue back a little bit just to talk about Lulu's diagnosis, just so that people who are listening can understand. So once you were in hospital and she was having seizures, because it was probably up to about 200 a day, I'm sure that we had a discussion around that point. Yeah, okay. Yeah, she was having up to, you know, 250 plus infant, like the spasms.

You know, epilepsy is a really big umbrella term. So epilepsy isn't just seizures, so to speak. Yes, that is very much a part of it. But some people have very full functioning lives with seizures. So, you know, in Luella's case, she's very hard to treat. She falls into a very, very kind of rare and hard to control category.

You know, essentially infantile spasms is like the brain just being electrocuted and firing off. The neurons are just overactive and firing off. And it's kind of like being struck by lightning, just bang, bang, bang, bang, constantly, all day, every day. And she has these jerks and these motions that her body, you know, sees up. And, yeah, she was having, yeah, 250 plus at least that I was counting, let alone what we couldn't see.

And, you know, that just causes brain damage, epilepsy and constant, you know, lightning strike where these neurons are firing off. It's brain damage constant. And when they put on the standard meds at that point, I know things have changed a lot for you over the years, but at that point, you know, was she having side effects? Like how was that? Was it helping? Did her seizures reduce? No. The short answer is no.

um you know we we listen to them and we you know because you you think to yourself well these people are specialists in their fields and they are don't get me wrong however when they just keep throwing medications at your child you're not seeing any improvements the seizures are not changing um not only is your child suffering but it's also you know there's this huge increase in

brain damage constantly which is causing ongoing disabilities you know she can't walk she can't talk she's non-verbal um you know she wasn't doing any she wasn't meeting any of her milestones you know at six months so you know where and even still today she's she's very very far behind her peers um so you know it

It just became so frustrating. Yeah, it does. And also, you know, that frustration with, you know, them being behind their peers too that they don't give you any sort of like. And for me, you know, I had a child that was born eight weeks early and then you're listening to the constant your child needs to catch up. Like what? And as a mum, I believe that. I really was so caught up in that at the time and the system.

doesn't seem to catch up with us yeah and they put that pressure on right and you know even even if you have typical children you know you you still you know are they doing this at this age are they doing that at that age and you know every child you know since having another child we now have um a second child who's yeah tom he's just turned three um you know there's so many things that he hasn't achieved at his age but i've had to

really understand that every child would just develop in their own time the way that they are supposed to. And I think there is just following these guidelines that are just really so outdated. Rigid. Because that's like me. I mean, it's taken me until the third one to look and go, hmm, hang on a minute.

She does it at twice the speed that you guys ever did it anyway. Exactly. It's so different and we are, I feel like we're quite programmed. I'm coming out of a little bit of that now where you do and the mother guilt that you get from these external rigid boundaries that we don't all fall into. 100%. So going back, do you remember when you first started using CBD, did you have any change?

Yeah, we did actually quite quickly. As soon as we gave it to her, we probably saw a change within two hours. What? Really? Yeah, it was really, really fast. So, you know, we took it really slow. You know, I was probably extra cautious a little bit because I had, you know, other family that and, you know, just...

societal pressure where you know you're made to feel like you're damaging your child by looking at this as an alternative alternative treatment which we now know is complete bs yes um took a few years but yes we know that now don't we everyone's catching up finally everyone's catching up thanks everyone yep yeah um and i think you know i was seeing such a change in her and essentially we we got

her spasms right down you know in the world of where she sits on the epilepsy spectrum as far as you know mild to severe you know we got her down to around 50 spasms a day which is a huge improvement but it's still 50 too many yeah you know yeah yeah absolutely um but yes we saw a lot of improvement and a

She, her developmental milestones, albeit they came later, I know were a direct influence of giving her the CBD or she wouldn't have been able to achieve it. Look, it was a combination of different things, but in adding that in, it just allowed either medications to potentially work better. But also, as we know, we've all got that endocannabinoid system within our body, right? Yes, we do.

So, you know, being able to hit those, you know, receptors in her brain, work with that endocannabinoid system, it was just a game changer for us. Yeah, it's been amazing. I think, you know, look what you're saying with the endocannabinoid system. Whilst we seem to not know a lot about it, it was discovered in the 1990s and it's only being taught into about three medical schools in the world, even though the system overrides all of our other systems and we have receptors on all sorts of different parts of our body. And I was doing a bit more reading around cancer and cancer tumours have receptors on them. So it's, you know, it's unbelievably mind-blowing and we really hope that modern medicine catches up and decides to teach.

teach that into university. It would be really good, wouldn't it? Wouldn't it? It wouldn't be good, but it can help other medications work better because the system goes back to homeostasis. Exactly. So tell me a little bit more about the Lulu Love Project. So the Lulu Love Project is essentially what is a non-for-profit organisation that we've had running and it's been a way to,

I guess, give back in a nutshell. And I've been doing that by running and raising money to give back to the epilepsy community by fundraising for Epilepsy Action Australia, who is actually Australia's largest and longest running epilepsy charity.

I'm now officially on the board for that charity. Yes, that's wonderful for them. Wonderful for them because honestly your advocacy and the way you write, the way you write and the way you take us on that journey with you has always just been fascinating for me and, you know, it really helps us understand. Like I really didn't understand. I remember even when I met you years ago because if it's not in your life, it's very difficult to understand. It is. But you're just amazing.

helping people or educate people that's it thank you I appreciate that I think I've just always tried to give a really raw opinion opinion but also like explanation of what day-to-day life is like and it's not always sunshine and rainbows you know I don't think that epilepsy along with the suffering and all of the the disabilities that my daughter you know

has because of of this condition is is a gift it's not a gift to see her suffer you know you know you can live with the disabilities because you can you there's ways to adapt life and you and you you get more comfortable with your new normal it's the suffering that we can't stop and that has been the hardest part and where I kind of just I wasn't able to find something that

resonated for me with other parents everyone was talking about how you know this experience was such a gift and I just wasn't feeling that I like I love I do love the way you say it how it fucking is because we need to understand that and everyone handles things differently too exactly you know I think it's easy to cast judgment from afar yeah it is and

even if you are in similar shoes, we're not the same person. You know, how I handle trauma or grief or stressful experiences or whatever it is, is going to be very different to you or the next person. And that's the beauty of what makes the world go round. Isn't it? Differences of opinion. No. But, you know, I think, you know, this is just my interpretation of what we experience, which I've shared, you know, publicly online and it has been pretty.

Yeah, it's taken a lot to be that vulnerable because it's not how most people talk about, you know, living with epilepsy and, you know, disabilities and things like that. So, you know, it doesn't always float everyone's boat. Doesn't it? It floats my boat, babe. I love it. I just really love it. Because particularly, again, it's not the norm. I get really sick of seeing people form these groups and have the same opinions. All right. We all have different opinions. And that's, to me, that's where we learn. Absolutely. In these discussions and in the differences, not in the norm. How do you keep yourself in that place where you're grounded and where,

Like, you know, I was thinking about some of these questions I've written down, but what do you fiercely celebrate in like in your quiet moments, in the moments where we don't see you? It's changed over time, I'll be honest. Like how I answered that question now would be very different to how I answered it, you know, three years ago. We're currently at, you know, a plateau, which is feeling really, I don't want to say peaceful because it's not quite the word.

But it's finding some maintenance where, you know, Luella's seizures aren't as severe and frequent as they were and that's due to a number of different things. So that has allowed me to start enjoying more of the things that fill my cup, you know, because I'm not...

I still live in fight flight, but it's not as crazy like it was. As it was back then, yeah. Yeah. And, you know, with time you learn to, I think what it is is I found an element of acceptance and that's been a really hard thing for me to accept life as is. And I don't think I'll ever, sorry, I don't think I'll ever, you know, embrace.

epilepsy with open arms and be like, you know, it's okay that you're here. No. I think it's finding ways to just kind of be like, okay, this is our life. And we are very slowly trying to make the best of it. And it's taken a long time, you know, to get to this point. But you're a fighter, babe. You're a fighter. Yeah.

Like, honestly, and, you know, thank you for sharing that because, yeah, again, it's important to know like it's radical acceptance is hard work. Yeah, it truly is. So I think, you know, what I celebrate in the quiet times is what this might sound selfish and I don't mean it to, but I really celebrate my body. Yes. And that probably sounds, you know.

But it has got through so much. And having a child who can't walk, can't talk, can't do all of those things, it's made me appreciate my body and what, you know, I'm capable of. And that doesn't mean that, you know, Luella's less than because she can't do certain things. It's not that. It's just, you know, going out and running. When I'm doing that, I'm always so grateful.

to have a body that can do those things for me. And then that in turn inspires me to do it more because, and that, you know, that brings me better mental health. That gives me better perspective on life because not only do I enjoy it, but I also, you know, I run for her. Yeah. Beautiful, babe. Yeah. So it's kind of like this really nice full circle.

element in our life or in my life mainly um to just feel very very grateful to have a body that is healthy because at the end of the day you know health you really don't realize how important health is until it's taken away it's taken away yeah you don't and You know, I speak to people about that quite a bit actually and also, you know, you don't realise that the systems around you are broken. You don't realise so many things because we're so lucky to have that and, you know, when it's taken away, it changes absolutely everything. Absolutely and especially if you're in a position where you can't control what is. You know, I can't stop her seizures.

And I think that's one of the hardest parts because you don't have that control and you just feel helpless. And as a mother, you have that internal, I say to my kids, it's like a thread that I have with you. And, you know, if that thread gets shaky or...

broken it it physically it attacks us physically and mentally and absolutely yeah it's it can be tough and you know you being able to keep yourself you know physically and mentally active and able to do all these things is just phenomenal not only for her but for all the other people that you help like this is the thing and I don't think it's just people with epilepsy it's just the way that you you handle things the way you the way you

talk about things and the way you action things is, yeah, amazing. I appreciate that. Thank you. So you have spoken really openly about your journey, including using CBD, which... unfortunately still carry stigma as much as you and I are watching this leap ahead, leaps and bounds. There's still so much stigma with healthcare professionals, with, you know, with society and the way, you know, the way they handle it. I mean, I remember people talking to me years and years ago about they wanted to put their kids, their small children on THC and that blew my mind because that's not something.

that we've been taught is anywhere near acceptable. And the only things I could find on it was going onto YouTube and watching some stuff from American babies, you know, using THC. And when you see it and you see the difference that that makes, it's, you know, it's absolutely mind-blowing. And I think that, again, we've been given generations and generations of bullshit at the end of the day. It's all bullshit. And it's going to take a few generations now until we get there again.

So what do you think has kept you grounded in your truth? I think, you know, that's a big question because you've, like, from what I've known, you've always been grounded in your truth. But how do other people that aren't necessarily, you know, as strong as you in coming forward or as strong as you in using their voice, like how do they do that? How can they stay grounded and do that? It's a big question. I think it's intuition. Yeah.

mothers like you were saying before like we have this thread that's attached to our kids and we always will and that bond and that just inner knowing every every time I speak to a mom I was actually just talking to someone earlier and she was like you know they she was talking about a recent hospital admission she's like I just knew something wasn't right and I don't think that um evidence

Like it's never enough for doctors and for nurses, you know. And look, they're great at what they do, but unless there's kind of, you know, it's backed up by hard evidence, it's kind of not considered. You know, we're often essentially like. And Australian hard evidence. Sorry for interrupting, but you know what, that you can go, here's all this stuff, here it is from the States. And they're like, oh, sorry, Australian people. We don't have Australia. And you're like, oh, okay, what is it? Because we're near kangaroos. What is it exactly that makes a difference?

Sorry. No, don't be sorry. I think that mother's intuition is never really taken into account, which I often found really frustrating because you know your child best. So I think I encourage.

mums especially because normally it's mum who ends up you know at the doctors or in ed that's not to say that that dads don't or the partner doesn't but generally it's you know the the primary caregiver and i think they just need to listen to their their intuition and speak up because if you don't speak up you kind of just end up on this kind of roller coaster that takes you in a certain

on a certain path which may well be what is the right way for whatever it is you're dealing with but if you're in a situation where you know you kind of going through medicines or you're seeing all these different people and nothing's working why do we continue doing that why do we continue following these processes or these paths that are producing no results

Yeah, and if you're screaming, if you've got what we were talking about with that thread, or I don't know, everybody probably understands it differently, but if you've got that and something is screaming at you, particularly in your gut and... you know, I've only learnt this in my 40s sadly, is to listen, like listen to that, not just for your children. Listen, women and when you come together with other women and you start talking about this, you know it's true. We have a very, very strong intuition. It's one of our gifts but we have been taught over generations again to dull that down. When it comes to your children, it will try and scream at you. It really will, right? And listen to it because most of the time it's right.

It truly is. Most of the time your intuition is right. You may not have a doctorate behind you, but at the end of the day, you know your child best or you know your body best. So I think it's kind of time. And look, I feel like it kind of is happening a little bit. Doctors are starting to listen a little bit more, but at the same time, they're just, they're so clinical. They're so caught up in what is considered protocol. rather than considering other things. Yeah, and look, we have lost our way. And I'm saying this from personal experience because dad was a doctor and when I used to watch the way he dealt with patients from researching, drawing them diagrams, explaining to them what was going on in their systems to now where we've got literally seven minutes to walk in and tell them, blah, this is what I'm thinking. You know, they don't have the time anymore. Universities are very different. Universities are funded by big pharma and, you know, unfortunatelythat's just a sad truth. And that controls the narrative, doesn't it? Yeah, it controls what they do think about and, you know, watching it over the last few years, it really is quite loud what's happening. And I think that people are pushing back and this is where I had a bit of that with Dad, like he's a doctor, oh, my gosh, he knows the best, right? And I know I still have that with other doctors. I've had that, you know, in times when my children haven't been cared for and I've been stuffing the intuition down and then realising that, you know.

A, not everyone's the same like that, but they are taught in a specific way. And so if you can just speak up, it helps not only you, it helps your child. And then it helps other people speak up as well. The more of us that speak up, the more answers we'll get. Absolutely. And I think as well, and we had this experience where, you know, if you are finding there's a really good nurse, like for example, if you are in a hospital environment and there is just a nurse that really listens to you as a mum,

and really gets you and understands what's happening, latch on to that because that's what we did. And honestly, she was our saving grace. And there is no words to truly describe how incredible this particular nurse is. We love that. We love that. And I think it's so important to still.

You know, you need those lifelines when you're in there. Nurture those relationships. I used to bring them chocolates. I'd be like, yeah, chocolate, anything. Just to try and have that, you know, establish a relationship with your healthcare provider that you... But I think it's also important that they build one with you because you're the one under the stress, right? You know, it's their job to kind of build that with the parents because you are under so much stress and pressure with whatever you're going through.

Yes, treat the patient for sure if it's a parent-child situation, but you're kind of treating both. Yes, the family. You're treating the family. And I think, you know, if you get, you know, one of those really good ones like we had for Lulu, who we still know and speak to to this day. I love it, yeah. Yeah, they're like a very special, you know, earth angel to hang on to.

Yeah, absolutely. That's just beautiful. And it makes me happy to know that those people, I know, I see them. I see them every day. Like there are still some excellent, beautiful ones out there. Agreed. So what do you hope changes perhaps in the next, I don't know, I keep saying five years and then five years goes past. But what do you hope that might change, you know, medically, socially, politically for families of children with epilepsy? Big question. I think, you know, and look.

i'm just one voice do you know what i mean i'm i'm certainly not super across politics and and those sorts of things but as far as cbd oil goes it's for me it's one of those really tricky things and i don't know if you agree with this but not every cbd oil is going to work for every single patient in the way it did for that one and for that one you know because

I like to think of our endocannabinoid system as like a fingerprint. It's so unique. Yes. So no two are the same. So expecting the same results for every single person from, say, one particular CBD oil, it's kind of not that cookie cutter. No, absolutely not. And I feel like they're trying to get all these clinical trials to...

obviously promote the use of it and hopefully we can get more access to it but there's this you know we've you know we've had luella on some that were amazing and they worked for a really long time but now we've found as she's a little bit older they're not working and you know that that could be a change with so many different things yeah so many things i think they need to start studying the plant

You know, in some ways the doctors need to become a little bit like horticulturists around. Or can we please get some neurologists that are willing to, like there's this whole research program going out of UNSW. Sorry, not UNSW. Is it UNSW? Sorry, you might want to edit some of that out. But there's a whole university-based research program.

that we're affiliated with for CBD oil. But, for example, you know, they're doing all these tests on fish and, you know, small type. They're doing amazing things, but it's not rolling out into human trial. And even if they do, paediatrics is not included because it's considered too risky.

It feels really backwards to me to want to treat the adults first. Yes, I understand why, because they feel like it's safer. But these kids who are struggling and don't have access, don't you want to see it work on children like... 100% I mean for me you know and I think if they put the call out there'd be so many parents that would say a resounding yes to that it's to me knowing what I know it's one of the safest things that we can try with no side effects and well little to no side effects really small side effects compared to the medication exactly when I saw them roll out

things like vaccines without even bothering to do clinical trials or check how they work and yet the plant, there's something very, very wrong there. I'm not sure what it is but it doesn't seem right. I think it's fear-based. I think people are really caught up on science and sometimes science just isn't there yet. Sometimes you just have to try it because someone's got to break the mould. Someone's got to take the risk.

But I tell you what, if I had all the money in the world, babe, this is what I think about sometimes at night. I'm like, if I won the lotto, that's what I would do. But I don't care to patent that. I don't care. You just want the answers so that the doctors start just going absolutely right. But it goes so much higher than that, doesn't it? It becomes political because then it becomes, well, you know, who is going to endorse that? Like how are we going to get across all of the red tape that comes with that?

You know, we couldn't really even get it through our neurologist. I had to go elsewhere. And I found suppliers that it was, I think when you get to the point where you've got nowhere else to turn to, you do get desperate and you do start thinking, well, what do I have to try? And what do I have to do? And what resources do I have to?

to utilize in order to help my child but as a parent you can't get it from doctors as a parent who has never been involved in that at all like i can't imagine having to to try and find cbd because i mean i remember back in the day like it was really hard to get it was like 500 a bottle and there was this whole secret underground network of people but you know to me number one it would be safer if it was available through that system through our system

I totally agree. And look, you know, there are ways in which you can, if you are concerned, you can have it tested these days to check, you know, the ratios of your, you know, your CBD and your THC and things like that. If you are worried about that. I think I just got to the point where nothing was working. I had to try something else. And we did our research. We did our research. We spoke to parents. We hunted people down.

called people from overseas. Like we did every kind of, you know, due diligence that we could do within our control to make sure that this wasn't some, I guess, you know, not woo-woo. Fly by the night. Like fly by the night, woo-woo or whatever. Fly by the night or unethical. Like we wanted to make sure that there was evidence out there, albeit anecdotal, we wanted to make sure that.

OK, well, this child is very similar to Luella. This is how they did it. OK, we're just going to replicate that. And that's what we did. Yeah. And, you know, and that is just it's it is strange that you have to go to those lengths because, again, when you've got a child who's sick.

You don't want to be spending time doing that. You really wish that there were easier pathways. But the communities that this then that you find that you have no idea that this is all going on, right? But there are just beautiful people out there who are willing to share their experience, willing to go, hey, I heard this or heard that. And I think that's how a lot of people end up, you know, especially back in the day, that's what happened. You know, of course now, I mean, you can go to your doctor.

I just want to make a note that raw CBD is particularly helpful for some people with epilepsy, which is the THCA and CBDA, right? So this is a product that's not heat treated. Ooh, can't get that through the medical system in Australia because, ooh, it wasn't heat treated. Something could be wrong with it. I mean, this is just crazy, crazy stuff and then it needs to be irradiated and it needs to be all these other bloody things. Yeah, and tampered with in a lot of ways.

tampered with you know and a lot of the big big farmer like you know i'll say it here and i'll you know i'll stand by what i believe and that is isolates is bullshit isolates are a waste of time i've seen more people react super badly you cannot control the plant it comes with a host of other cannabinoids flavonoids terpenes that nature has provided you start mucking around with that it doesn't work the same and

no two cultivars are the same and as you were saying before that this plant may work like for lulu but it might not work for sam down the road that's right you know he might need a different a different twist so don't give up out there like if you're going through this and even if you're going through the medical system you know if your intuition's screaming or you think there are try other cultivars i always you know want to push that to people because it isn't the kind of medicine where

We can go now to a dispensary and say to the person, you know, what are your five raw CBDs or your six raw CBDs? It is a bit more difficult than that. Absolutely. But if you continue to push and ask the questions, you will get the answers. Oh, absolutely, yeah. If you keep digging, it really just depends on how determined you are. I mean, I was so determined. I was so determined to try and find an alternative that would help Luella in some way because, like I've said,

you know, before nothing else was working. So what are we left with? Like we just sit here and watch her suffer and do nothing. I couldn't do that. Like a lot of parents can't, but they often don't know where to turn. They don't know which door to open. They don't know who to talk to. And I think that is part of the challenge is, you know, finding a supplier, you know, unfortunately the supplier that we had went under.

You know, and I think that was for many reasons as far as, you know, the government getting involved and wanting a piece of the pie now so that they can, you know, they can generate the dirt. It's completely changed it. And I think, you know, they were doing really well and they were helping a lot of people because I was constantly referring them, nothing in it for me, but I was just sending people their way to see who it would help and it was helping. But then I think, unfortunately, you know, the way these things go is that.

And I don't know if this happened, but I just assume that, you know, potentially they kind of got shut down. Yeah, it happens everywhere, unfortunately. And look, there are still a lot of great Australian suppliers. And if, you know, you jump over the border into New South Wales, they've got some different laws around hemp and, yes, how it's labelled. But, again, ask questions. Just go and ask questions because sometimes they're not allowed to say things because the government has said you can't say that. So it's just a reminder that just keep asking questions and also find someone who, you know.

Online now you can find so much more and you can find people telling their stories, you know, even, you know, TikTok and those things I never thought I'd watch. Absolutely. But you can find other people with perhaps something similar to you and you may be able to find it that way. Ask your doctor. Ask them because the more that you ask them, the more they have to go, hang on a minute, maybe there's something in this. I really need to educate myself more. There are 27,000 GPs in Australia and there's only a small percentage of them.

you know, working with cannabis now, even though it seems like every second one is, but it is really a 10% of educated professionals. And there are some great cannabis doctors who would be able to help. It's just got to ask the question. Yeah, and I think, you know, knowledge is power. So you also have to come in educated, I think, to a degree. I think you need to take the time as a parent to understand.

you know the receptors and the endocannabinoid system you need to kind of understand how it works so that when you are talking to the doctors you can ask the appropriate questions yeah for whatever it is you're looking to treat but you know if you're you're looking specifically at epilepsy it's just it's it's not a cookie cutter um condition so you know that means that like even with medicine it's not going to be the same for everybody

No. And like, I remember seeing Helen Kapalos did a documentary. and she this is back in 2016 and it shows back then people trying to get on to to cannabis and some of the patients did have epilepsy and they had a specialist on my goodness me i was literally throwing things at the television watching her speak because she's like she was just so dead against it and so it wasn't and it only works for 30 and i'm like going okay so for 30 of people it works let's do it

Right? That's a big number to me. It's a huge number. But, you know, if you look at the FDA and the TGA, they focus purely on numbers and it has to be more than 50% efficacy in order to get something even, you know, going as far as, yeah, looked at. And, you know, the 30% is just not enough. And it's really frustrating because if you live in the 30%, which we do.

You want access to this. You know, you want more availability. You know, at the moment we are at a bit of a standstill with where we go next with it because we have tried and tested so many. But I'm actually speaking to a mum over in the UK at the moment. And, you know, that's where I've had to go that far to talk to her about what, you know, very, very similar diagnosis, very, very similar, you know.

ideology and all of those things so you know but i'm having to talk to her because the doctors here just don't know and she knows more about it than they do yeah and that's the interesting part about it is that you will you again you find people in this space where it hasn't quite been accepted by general medicine yet where they will have more of an understanding and and yeah and look education is key

Endocannabinoid system education is key. Well, there's more than CBD and THC. There's CBN, there's CBG, there's CBGA, there's THCV, there's CBDA. You know, again, it's not a one-size-fits-all and the plant is she's quite complicated. Depending on where she's grown, she'll have more of one compound than the next. And there is also some thought, and I guess another frustration for me because, you know, I believe 100% in home grow, like you should be able to grow your own. I don't care if that's two plants.

or 10 plants or whatever it is you need. Well, that's Canberra, right? Yeah, go to Canberra. Because all the bloody politicians live in Canberra. Isn't it? Isn't it just like, okay, does anyone see this making sense? But, you know, growing your own and actually touching your own plant, she's smart enough to start working out what you need. That always blows my mind, right? Crazy.

You know, we push for home grow. We hope that one day that that becomes a possibility. I mean, I say five years. I said five years five years ago. I keep looking and thinking, come on. We don't know what's going to happen. Yeah. No, we don't. And look, I know lots of parents that grow themselves. Yeah, and good on them. And good on them because they've worked out what works for their child.

and they can't get it anywhere else so they've had to take it into their own hands but regardless doctors still won't look at it like they like they won't support it now but they also won't you know they still kind of they won't discourage it but they won't support it it's this really weird space to be in I think and only if you can show them even when we showed all of these great um progress with Luella they were still a bit like yeah but

It might not be that. When you see it and you're the parent and you know exactly, like you just said before when I asked you how long it took and you're like two hours. Yeah. You were there. You witnessed it and yet, you know. 100%. And hundreds of parents, actually thousands of parents in Australia, let's be honest, who have seen it work. 100%. Yeah, and I think it just is. I think where parents.

It's really challenging because you're possibly living in a state of fight or flight. And so you're so stressed. And then to add this research on your plate to start working out, you know, trying to get this almost like science degree behind you in some way or doctorate behind you. It's really intense. You know, you've really got to take that time. But for us at the time, Luella was having, you know, I mean, she still has awful sleep, but she was awake for like.

you know seven hours and so at nine so Dave and I were tag teaming and so when you know there was points where I was just rocking Lulu for hours and hours and hours I had my phone and I'm reading and I'm because I had the time and there was nothing else we could do so you know but I would often stay up until like two three in the morning to to educate myself because

No doctor or no one out there was going to help us. And so, you know, Dave and I just ended up kind of tag teaming and we'd send each other information and we'd read about it and that would lead us to someone that we could talk to if you could whisper something to the Erin who just received Lulu's diagnosis, what would you tell her? Oh, gosh. It's very different now than what it was, you know, three years ago, four years ago. I think you're stronger than you think you are. And.

you know, kind of like it's going to be really, really hard, the hardest thing you'll ever experience. And it will take parts of you that you won't ever get back, but you'll build others that will, you know, put the jigsaw puzzle back together at some point. And, you know, I'm not saying that we're...

Yeah, so that's what I'd say, you know, and that doesn't imply like, you know, we're out of the woods by any means. It's just that to kind of prepare a parent for what's coming. Again, we're all different, so it's really hard to, you know, narrow that down. But for me, it would just be, yeah, you have grit. You have grit. You have got grit, babe. Like honestly, watching you from afar for over the years, it's like you've always been inspiring to me just as a woman, you know, and reminding me to find my voice. Yeah, and I think I'd encourage that with everyone. Anyone that is going down a medical path, especially with their children, find your voice and be the squeaky wheel because that's the one that gets the oil.