Purple Day Special For Epilepsy Awareness: Nicole Bateman chats with Nikki Talbot

In this special edition of "Conversations with a SEND Mum," host Nicole Bateman is joined by Nikki Talbot, owner of Pudding and Pie, and a parent of a child with epilepsy. Together, they share personal experiences, and heartfelt reflections on navigating epilepsy parenthood and raising awareness on Purple Day.

Episode Highlights:

• Parenting a Child with Epilepsy: Nikki shares her journey as a parent of a child with epilepsy, offering insights into the challenges, fears, and triumphs she has encountered along the way. She reflects on the impact of epilepsy on family life, relationships, and the importance of resilience in facing adversity.
• Transition into Adulthood: Nicole and Nikki discuss the unique challenges faced by parents as their children with epilepsy transition into adulthood. They explore topics such as independence, healthcare transitions, and the need for ongoing support and advocacy in ensuring the well-being and empowerment of young adults with epilepsy.
• Celebrating Purple Day: Purple Day is an international initiative dedicated to raising epilepsy awareness and promoting understanding and inclusivity. 

Trigger Warning:
Please be advised that this episode includes discussions about seizures, the experience of losing a child, and references to cancer, which may be triggering for some listeners. Listener discretion is advised.

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Check out our Season 1 and 2 sponsor The Super Sensory Squad who support kids in understanding the eight sensory systems and emotional regulation using their penguin squad at: www.thesupersensorysquad.com and www.instagram.com/thesupersensorysquad

Transcript

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Hello and welcome to Conversations with a Send Mum, with me Nicole Bateman as your host, sponsored by the Supersensory Squad. Today we have a few different special episodes because it is Purple Day. So for some of you, you may be like, what is Purple Day? Well, Purple Day is a day where we raise awareness for epilepsy. And if some of you have listened to the first episode ever of this podcast and, and some of the others. Below you will know that actually my son has epilepsy and my daughter also has seizures. So it's something that's very close to my heart. So we are celebrating today, raising awareness. I am here, first of all, chatting with Nikki Tolbert who is an amazing mum and also owner of Pudding and Pie. So welcome Nikki to the podcast. Thank you very much for having me. I'm thrilled to be here. Excellent. So, she also has a son who has epilepsy. So, can you just share a little bit about your journey and your links with epilepsy for us, first of all, please? So we go way back with Charlie's story when he was born very prematurely. He was born at 25 weeks we were expecting identical twins and we were told early on really that it's at high risk because they were identical and sharing the same placenta. And actually it was twin to twin transfusion they were concerned about. So we had Charlie and Tom at 25 weeks weighing one pound 12 and one pound 14. respectively. They were in special care and very sadly we lost Tom when he was two months old to a condition called NEC, which is to do with the gut that's just not ready for milk and sees its foreign body and actually can actually affect term time babies as well, full term babies wherever. So after that, as most mums, new mums bringing their baby home, we were watching him like a hawk, which is normal anyway, isn't it? But when you, your baby's born so early and you're used to them being weighed every day, their temperature, their blood's been taken every hour, lots of machines, lots of concerns over their brain, over their heart, etc. And he came home at three months of age, weighing less than four pounds. So he was still very vulnerable. And that's actually where I my love for nutrition came really, but that's another story. So Charlie had what we were told with febrile convulsions for many years. And we just thought it was one of those things. He, whenever he had a high temperature, normally through illness, he'd have a, a convulsion and we had lots of episodes. It was only when he was nine years of age that we were at Centre Parcs. And we were rushing to go to an activity and he was just a little bit further behind me. And he crashed to the floor in the main reception area. The only way that I can describe it is that it looked like he'd brain damaged from just falling, how it manifested because it wasn't Charlie. He was grimacing. He I mean, I didn't know, didn't know anything about epilepsy at this point. And I actually thought he'd caused him brain damage to himself, as ridiculous as it sounds. We were so fortunate because there was a child doctor, a visitor. And she said, this looks like a grand mal seizure. Well, they call it chronic tonic now, don't they? He lost his two front teeth. And we had an ambulance come out and they mentioned the word epilepsy. We felt as if our world had just literally stopped. It seems such a. Big deal. He actually had had what we thought was fainting episodes at school and this was obviously the sign. Now, Charlie, when he was nine, he started puberty quite young. So, you know, little, little signs that he was going through puberty at the age of nine, which is very young. Yeah. And we've been told since that that actually the hormones coming out actually brought the epilepsy on. Yeah, that, that often is the case in teen years with those hormones, even those who maybe have controlled seizures, or they could have their first seizure then there's different stages, isn't there, of the brain development. You know, often when they're about four, there's a lot of people that have their first seizure, then around puberty, or then in their sixties is quite a common age, randomly, isn't it, the first seizure. Yeah, and actually I don't think there's a, a, an easier way or a harder way. It's tough either way and, you know, as you know yourself, Nicole, you don't ever relax. No. And actually each time it happens, it comes and bites you on the bum. So it's that, I mean, we are very lucky in many respects and a big part of this, which I know we've discussed before, we believe Charlie's trigger is tiredness. Yes. And. The reason we feel so lucky is they normally occur within the first hour of him waking. So we thank God for that, that we are so, so lucky that we have that. But it's also very difficult because he's now, he'll be celebrating his 18th birthday in April. And all the joys of teenage life that it brings, going out, having late nights. Having, I mean, having a few drinks, he, he actually has moved over to the adults now, which felt like a big deal, but actually it was great and we're ready for it and he's ready for it. And they said hangovers can actually cause an issue. Not actually drinking itself, but hangovers. Oh, wow. Yeah, so going to uni. Yeah, that's right. So it's all a new territory and I really feel for any mum that has any child that has any additional needs, whatever it is, because you are constantly fighting with yourself. I want to keep them safe. I need to keep them safe. I want them to have a normal life, whatever that is. So at the moment a lot of Charlie's friends are learning to drive. They've got a car. There's friends that are younger than him that are doing it now. He's got a younger brother that's just had his 16th birthday. I'm very aware of what's around the corner. Yeah. And Charlie can't. 12 months seizure free. Now I know in the whole scheme of things, it doesn't really matter. But it does. It does matter. Yeah, it's a big, it's a big deal for them, isn't it? It's a, it's a big deal when, when all your friends are doing it and your younger brother as well, like that is something I think about, even though my son is only seven and you think, yeah, it's, it's all of the different things that it impacts, it's not, you know, it's not just the seizures, it's all of the. wider impacts too, that people don't really think about but as a mum, you definitely think about them. You constantly think about it, and it's so true. It's I mean, friends do say, that, and families say, that we don't ever hold him back. You know, we've ziplined, we've been on bloody elephants and horses in the ocean, and, Yeah. Climbing waterfalls all over, you know, the world and whatnot. So we don't, but I think inside here, we are, we'd never let it show. So I'm being very open and honest with yourself, but he would never know that. Yeah. Yeah, absolutely. And that's sometimes that's the load, isn't it? That as mums, like I'm sure there'll be people listening that will resonate with that because we carry a lot of that. We carry those mixed emotions. We want our kids to enjoy life to the fullest. However, there are certain things that. There's loads of things they can do, but there are certain things they actually, they can't. And this is exactly, I mean, last year, and some people that's listening to this may be horrified at this, but I let him go to Reading Festival last year. He really wanted to go, and the friend that he was sharing a tent with, we had all the chats. I can't believe actually that I did sleep, I did actually sleep, he was there, and she, very naively, I thought, when he asked if he could do the early bird offer, that was Getting the tickets early? No, it's been there for five days, instead of what everybody else was doing was two or three. Oh wow, I would have thought, yeah, getting tickets early. It's only when a friend said you do realise that that ticket you've paid for is there, he's going to be there for five days. And I've got friends with children that haven't got a condition that are very concerned about their child going to Reading. Yeah. Do you know what? He did it, came back with a face full of glitter, hadn't washed for days he didn't have a seizure, which I cannot believe. That's such a win, massive win. And it was a win for him, it was a win for us, and again, if there's any advice that I could give to anybody, it would be to trust your guts, to keep talking and to let them live their life as hard as it is. Thanks. Yeah. I can't even imagine that stage that you're currently at. And you know what, I wouldn't either. So, how old is your son? Seven or eight? Seven, yeah. I couldn't either at that age. So don't expect yourself to. Don't give yourself that pressure. Focus on today and what he's doing now and what he can do. And that's advice for children, parents of any children, isn't it? Yeah, definitely don't get too far ahead of yourself because, you know, our mental load for the day to day that we're in is, is a lot, especially if your kid has any additional needs, medical, you know, anything like that. Let alone thinking about 10 years time. You know, I mean, I think that's, that's a thing in life, isn't it? Just not to, and I mean, I've, I've literally just finished my book on our life. And that's one of the things that I, that I, the advice about, and it's so cliche, isn't it? You, sometimes you can't take a day at a time. Sometimes it's an hour at a time, but reminding yourself that that's what you need to do. Okay. This has happened. Let's deal with this today. And I'm the worst for, I'm the worst for thinking ahead. It doesn't help us. Does it? No, no, absolutely. When's, when's your book coming out? Is there a date? I'm hoping sometime in spring. It's only literally gone to my editor now. So I still haven't even got a title for it. So the fact that I've finished it. Yeah. It's a thing for me. And honestly, I've said this a hundred times, but it's so true. If just one person reads it and it helps them, I've done my job. I really, really have. So I really have a very strong feeling inside that I'm here to help others. With things that we've gone through, whether it's through you know, special care, premature babies, losing a child. We're going through a cancer journey at the moment with my husband, I've been very ill. So there's lots and lots of things that's happened, but I truly believe that I can help other people with it. You definitely can. And, you know, as soon as soon as it's out, I'll put a link in the show notes here because, you know, even you just sharing here on this podcast, you know, what you've said already. It's definitely going to help people, and so your book is going to be even more full of amazing things so yeah, I, I can 100%, you know, know that your book will help more than, more than one person, but that's the thing, isn't it? It's, it's, I mean, that's the reason for this podcast is because, you know, You know, you want others to, who are going through similar things, to not feel alone, to know that there's someone else there, you know, you can go through like, your certain place in the journey with epilepsy and your son, I'm a certain place, you know, we're four years, four years in and everyone is different and everyone has, you know, there's loads of different seizure types. There's loads of different things like that. But what's something that you wish everyone would know about epilepsy? Like, thinking back to when you didn't know anything, when It's a really good one. That it can, it can come out in many different ways. In the beginning, Charlie did have vacant ones as well. Now, to him, I think the vacant ones are more scary. Because he said that it feels like a beating drum inside his head. And that he feels that he's gagged. Because he can't speak. He can't verbalise. So to others, whether it's family, friends, teachers, it could look like he's been ignorant. Yeah. He doesn't have them now. So whilst his clonic tonic ones, which are the ones where you jerk, where you lose consciousness and you drop to the ground, are very worrying as a parent and very dangerous. Everybody knows that that's what's happening and I think that maybe the preconception is that people think that is what epilepsy is. Yeah. But it comes across in so many different ways. To be aware that actually if somebody appears to be ignoring you But maybe something else is going on. Absolutely. And I think that's, so for, for my son, for example, he has focal seizures, which is, so there's, you know, often tonic clonics, then absences, and focals are kind of, not in the middle of, but you know, in between ish with length and some similar features from different things. So my son went quite rigid. So the bit of the tonic part, cause the clonic is the shaking. The tonic is the stiffness. So some, sometimes he does just drop to the ground, but he doesn't shake. For example he just, his legs just collapse. And he just drops, but then in those ones, actually, he is sometimes aware. Of what's happening. And he's like, my legs aren't working and he can actually speak, which, you know, a lot of people would just think, Oh, that's not a seizure, but actually it is the, the muscle tone goes in those ones. And, and, and it just goes, and then it's like, you're stuck. It, he says, I can't get up. I can't get up. I can't move. It's, the legs are. They're gone, the muscle tone is gone. And I think that must be so scary. Yeah. For them. And that, yeah, and that's the thing, you never know, because I don't know what my son is thinking inside, so it's good that he, Charlie, has been able to verbalise that to you, because otherwise we don't know as parents, can, do they know what's happening in some of them, do they not know, how are they actually feeling, that scaredness, because that's, that's what you, you're like, oh no, you want them to be okay, don't you, as a mum, and, yeah. You don't want them to be feeling any of these things. So there's, there's such a variety of different seizures and each of them have, different aspects. Yeah. So, you know, young epilepsy has a really good campaign that is, Called understand my epilepsy and that's the thing I think, you know What I would urge people to do is to if you know anyone Who has epilepsy some people may not share it because they don't want the stigma sometimes of that Unfortunately, there is still stigma around it But if you do know anyone then ask them about like, okay, what what actually what happens? Yeah It's like anything with any condition, isn't it? It's about opening up that conversation and it, I mean, this is how I felt when we lost Tom, that many people didn't know what to do or what to say. I totally get that. I totally get that. And if I explain to you how we dealt with it, that might be completely different to somebody else. So I think the first question, whether it's a condition or a condition, Something that somebody's been through is are you okay talking about it? Are you happy to talk about it? You'll get you'll get an idea straight away then whether somebody is or not and I think most people want to Particularly if you've asked them they might not want to bring up the subject, but I have people When we lost Tom, you know, across the other side of the street. And I felt sorry for them. I felt sorry for them because they felt uncomfortable. And even now I struggle with when people say, how many children do you have? I've actually wrote this in my book. And so I don't want to say two, because that's not true. And that's not fair to Tom. But equally, I don't want to, particularly when I've just met somebody. for them to feel uncomfortable. So what I do is I say we have we now have two children. Now in my head, that's acknowledging Tom, but not making a big deal of it. And it's People do have these workarounds, don't they, when they have things that are difficult to talk about. Charlie's very private about his epilepsy and I respect that. And I let him lead the way with it. Yep. Yeah, that's good. And that's, as they get older and everything like that, it's, every family can negotiate different, understandings of what, yeah, exactly. And, and where that child and led by that, that child and that, and that's why, again, you know, young epilepsy definitely. Has some youth advocates, has people different things that young people can actually get involved in if they want to connect with other people who also, won't be able to drive, for example, if they've had seizures in the last 12 months, or, different things where it's like, Oh, yeah, I'm not the only one, at least, because they may feel. Like they're the only one, if all their friends are doing it. And that could be tricky. I find that hard as a parent, actually, because, because with my personality, I'm very much sharing, sharing, overshare apparently and also. Getting up amongst talking to other people, other women, about all sorts. And I want that for Charlie, but I have to really almost put my, sit on my hands to stop myself from being too in his space with it. I've shown him forums where he can speak to other people of his age. I know that our hospital when he moved over to adults, they do stuff in person and he was like, Are you joking? No chance. And I have to respect that, but I find it very hard because I know the benefits it could offer. Yeah, that is tricky when, yeah, when they've, you've got the two different personalities wanting to share and wanting, but I suppose at least then people know it's there if they get to that point where they're like, actually, this would be really useful because different stages of life and, and different points you know, it's, it's potentially there. Yeah. So, so yeah, I think, the reason for, for doing these special podcasts on purple day is, is to just make you, you know, who are listening, just think, actually ask, like Nikki said, if people are comfortable with talking about it, ask them about their specific type of epilepsy different things, look up different things for, I'll put some links in the show notes, you know, of seizure first aid, because actually, That first seizure can just come out of nowhere. Like, my kids, they were having a bath, and then my son had his first seizure, and, you know, he, he was totally Yeah, I literally thought he was dead because he, he wasn't shaking, like, but he was so rigid, colour drain unconscious, just out of it, and I was like, what has literally happened suddenly and you're just, you never know, like, it's literally a normal day, isn't it, when, you know, in that centre park, you, obviously, you experienced, but those first Febrile seizures even and then like all of those things you just walk in like I remember walking into my my daughter's room and I just saw her shaking at that point and I was like are you kidding me not her no as well but you just don't know it literally just you don't know any a couple of things you've just said that was really rang true Charlie had a seizure on the way to school and one of his friends called me and a well meaning driver stopped his car and said, do we need to get a spoon or something to put a spoon in his mouth, right? And that was what the advice was years ago, years and years ago. So it is also about educating ourselves. And each other you know, so for me, it would be, don't try and restrain them, let them fit, make sure there's nothing in their way, you know, there's a chair that can fall down on them, or just make sure, and you know, don't even think about rolling them over until they've stopped fitting. Maybe when they are, have stopped fitting, pop a pillow into their head or a jacket or something soft to help them recover. Time it is good to, to time it. The other thing I was going to say is as a parent, if a parent's listening that thinks there might be epilepsy going on, to maybe just keep a record of dates, times, what was going on. I always put like sounds really silly, but I might say, One of them, we went to New York, and he had really bad sleep because of jet lag and being busy. He didn't have a seizure in New York. Unbelievable. We got back on the Thursday, and he didn't have school till the Monday. So he had the weekend to recover, and I'm very, very strict with his sleep. And what, what I mean by that is not just, oh, you need to go to bed at this time. Which is easier said than done with an 18 year old, but also about now don't sleep in all of this weekend because you're going to have to be getting ready for school, you know, getting a burly. Wednesday morning he has the seizure. Yeah. So what I did then in my record was put. Monday, 7. 20, after New York. So I would then actually remember what that seizure looked like. But I think it helps bring a little pattern so that you can maybe, maybe, identify a trigger. Yeah, definitely really important to track. Like, I've got a list of books of, you know, different things, and then notes on my phone to be like, this happened then, and this happened then. Yeah, like that. And what, what happened in the seizure? Because my son, for example, has multiple different types of seizures that sometimes are just really random new, new symptoms of seizures come up, like randomly. And also another thing is because you mentioned the spoon, definitely do not, If anyone's list do not put anything in anyone's mouth, they cannot one big myth that's still out there is that they swallow their tongue. They can't swallow their tongue. Yes. They may bite their tongue when they're, you know, when they're, when they're having seizure and then there may be blood from that biting, but they cannot swallow their tongue. So do not put anything in anyone's mouth because that could be super, super dangerous. And definitely as well, parents, video. I know it's, it seems counterintuitive to get your phone out, but that's what the doctors want you to do. They want you to video it because they want to then see is this a seizure activity, you know, is a seizure activity, especially if it's not as obvious as, for example, the tonic clonics. Yeah. You know it's the shaking and everything like that. If it's like a focal seizure and absence, you know, try and video it. Although sometimes I Still, because my son's seizures are not controlled, and there's, you know, he had about where he had like four in one week you know, and then a couple each week in October November time, so, and then having these new aspects of them, like the collapsing legs and stuff like that. Sometimes he's aware, and I'm like, I'm trying to get my phone out, but then he's feeling these things inside. He can't speak, but he's aware, and yeah, it feels a bit odd. Feels odd, but maybe having that conversation with him when he's not, Yeah, exactly. And actually it's a really good point, because the amount of times that a consultant has said, asked me the question, I wonder whether it's the same for you. Do their eyes go different or to one side or to another? And I'm like, Oh God, I don't know. So actually it's a really good we have Charlie asked if he could see what he looked like, so we have videoed him before. Yeah. And that's what they always say now. Just, you know, just. Just video. And like you said, because of the different, cause the different sides, et cetera, with whether it's focal or generalized, or, you know, there's, there's so many different things they could pick out on video. So definitely video. And if you come across someone having a seizure, just generally then, because if it's their first seizure or if it goes over five minutes, then you need to be calling an ambulance. So. You know, better safe than sorry. If you, you know. We don't call an ambulance now, but we did for a long time. And they were very happy to come out to us. And honestly, anyone that's listening to this, if you think that's a seizure, don't even hesitate about calling. Just call in. Absolutely. Cause they want to be there to help. I mean, now it's not a scary thing at all to call an ambulance. We have called so many, we feel that we are equipped to deal with it for Charlie and he doesn't need to go to hospital because they all present themselves in the same way. But anyone that's, you know, passerby, friend, family, a hundred percent, don't hesitate. Just call. Cause it helps you feel better then. And I've said that to Charlie's younger brother. We have never yet in nine years of him having epilepsy, Louis has not been on his own with Charlie. And I have said, we are very lucky that I think it will happen at some point. And I have said to Louis, he's still very scared. He's 16, but he's still very scared of it. And I've said, just call an ambulance. They will talk you through things as he's fitting and don't even hesitate. Yeah, yeah, absolutely. Absolutely. They are, and they come very quickly if, if needed. You know, my, my daughter went over five minutes and so I was like, Ah, okay. Like we need to ring. And, and they came out super quickly, especially if it's a child. So yeah, definitely very valid. So yeah, thank you. We could talk about this for like, ages. There's so many different things as well. But I will be talking with a few other people today. So definitely check out the rest of the special purple day episodes, you know, we'll be talking about meds and the impact of those. We haven't even covered that right here. But and, and different things like that. So thank you so much, Nikki, just to finish. What would you say, like one piece of advice to leave people with if they have a child with epilepsy or they suspect they potentially might, to encourage them? They still can live a very full life. Yes, there needs a lot, there's a lot of planning that goes in and thought about things. As you said right at the beginning, Nicole, there's so many aspects that, friends will go, oh, I didn't even think about that. I'm like, no, we, we can't. Leave the kids to be in the pool by themselves. And yes, I know they're teenagers now, but we can't leave Charlie even if he bathed on his own. So yes, there is a lot to think about. But to talk to others because somebody, A, might be able to give you some advice you hadn't even thought about. And B, more importantly, you're not alone. It's a really, really nice, comforting feeling when you know you're not alone. Yeah, absolutely. And other people get it. Like when me and Nikki, we met in per we met in person about a year ago, I think, at an event. And you're like, oh yeah, you literally get that kind of high alert, like, not, not being able to relax, switch off. Just, just like. Am I gonna get a call? And is this gonna happen? Like, what's gonna happen? And you've seen, when you've seen your child have a seizure, and that, that kind of really helpless feeling that you get, like, that's the worst feeling, that helplessness. But when you meet someone else who also gets that, then yeah, you just know, okay, there's someone else who gets that, and you do feel less alone. It doesn't stop that helplessness, but at least they get it. They totally get it. It's not just happening to you but you are so right, it's that helplessness. And as mums, we are the ones that want to fix it. everything. And this is a very, very sharp lesson that we can't fix everything. And actually, that goes on for parenthood in many ways, doesn't it? And it is a very sharp reminder that we can't control, we can't fix it all. But what we can do is comfort them, be the best mums that we can and help them to know that they are not alone either. Yeah. Yeah, absolutely. Absolutely. So yeah, shout out to any fellow epilepsy mums. You're amazing. And you know, all the mums and parents listening. But yeah, Nikki, where can people connect with you because they may want to find out more about your book or You know, things like that. Where's the best place? I'm pretty much everywhere. I'm, I'm on everywhere. Yeah, everywhere. Just look everywhere. look under a stone, under a hedge. I'm on LinkedIn, I'm on Facebook link Instagram and something else I can't even remember. But actually LinkedIn is probably the best one. So it's Nickol, but or Pham Pie, if you are family. One of those right. Excellent. Thank you so much, Nikki for joining me today. Really appreciate you sharing. Absolute pleasure. Thanks. So remember, if you want to catch any more episodes for our Purple Day special, there'll be two more coming up.