Purple Day 2025 Episode 2/2: Nicole Bateman chats with Kelly Norford

Purple Day Special – Parenting Kids with Epilepsy with Kelly Norford

In this Purple Day special episode of Conversations with a SEND Mum, Nicole Bateman chats with Kelly Norford, a mum of three children with epilepsy. They discuss the unique and evolving challenges of epilepsy: from managing different seizure types to navigating the impact on mental health, learning, and daily life.

In this episode, Nicole and Kelly explore:
 💜 The complexities of epilepsy – how it presents differently in each of Kelly’s children and how seizure types can evolve over time
 💜 Common triggers and daily challenges, including how unpredictable seizures affect routines and education
 💜 The impact of epilepsy medication on mental health, cognition, and behaviour
 💜 What parents wish teachers and childcare providers knew about supporting children with epilepsy
 💜 The emotional and advocacy journey of raising children with complex medical needs

Kelly’s insights provide a powerful, real-life perspective on the hidden impacts of epilepsy and the importance of understanding and support from the wider community.

Listen now to raise awareness and be part of the conversation!

Follow Nicole on www.instagram.com/conversationswithasendmum for exclusive peeks to weekly episodes. Please do send feedback and rate this podcast to help it reach those who would benefit.

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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

2:08

Hello and welcome to conversations with an SEND Mom, with me as your host, Nicole Bateman. And today it's purple day. Yay. And I am here with Kelly and she is gonna be talking and explaining about her links with epilepsy and her family's links. And we are just gonna have an honest, open chat and hopefully you will learn a little bit. About epilepsy and then also be able to share awareness. And also, if you listen to this right now, go and find something that you have that is purple and get it on for purple day. So Kelly, welcome. Thank you for having me. So excited to be here. Yeah, absolutely. I'm, I'm looking forward to chatting with you. So where did we, where did we meet? What were you doing on the day that we met? Yeah, it feels like a lifetime ago. Yeah, but I was given the honor to speak at the young epilepsy Hear Her Voice Day in February, which coincided with International Women's Day and obviously Epilepsy Awareness Day, which is where we met. I was invited to talk about our journey and everything that we faced through epilepsy and our link with young epilepsy who are amazing. Yeah, so that's how we met. And it was a lovely day. It was, it was a great day. Like if you, young epilepsy have some really great resources, especially for schools. So if you are a parent who has a child with epilepsy in your school, kind of need a bit more information about the general realities of epilepsy and the impacts on learning, and all of those different things go to their website purple day before we move forward Purple Day for people who I'm like, it's purple day, but people might not know what Purple Day actually is. I'm like, purple day is so important in our household. And like for some people they're like, what? But Purple Day is a day. That we celebrate epilepsy awareness by wearing purple.'cause purple is the color of epilepsy. Lavender is a flower of epilepsy, which is also purple. And it's just basically to break those stigmas and break the misconceptions also just celebrate and chat with people who, live with epilepsy. So, Kelly, what is, what is one thing that you're like, I wanna break that myth, or, you know, that stigma. I think even for us, when you first think of epilepsy, everyone thinks of the same type of epilepsy and they think of all of these things that people who are epileptic can't do, rather than naturally what they can do. And so that was something for us personally that we had to learn pretty quickly.'cause when we got a diagnosis of epilepsy for our children, we were like, goodness, you know, you think it's the worst thing in the world, and some days it is. Don't get me wrong. But there definitely is still that stigma attached to it, that someone's epileptic, oh my gosh, they can't go to flashing lights, or they won't be able to go swimming, or they won't be able to do all of these things when actually they can. It's just certain provisions need to be put in place. Yeah. Yeah, absolutely. And the flashing lights is something that I'm like, I like to share fact with everyone like I meet, even, even if they don't wanna hear it. I'm like, well actually, only about 3% of people who have epilepsy are triggered by flashing lights. And everyone's like, what? I thought it was everyone. Yeah. Yeah. Like it crazy. It's a very small percentage. And there's so many triggers. And randomly, my son, the first trigger was actually baths. And even speaking about baths, having baths, someone else having a bath. Yeah, that was a really big trigger. And you just wouldn't realize that. I never realized that. I don't think people realize how many triggers there are. And it can be all different things. And I mean, it shocked me myself actually, to be honest. I was like, really? But yeah, it's, it's mind blowing actually. Not one of them for. No. Yeah. Or us. But that's what, that's what everyone's like, oh, I'll stop the strobe lighting. Which obviously for some people that is key and important because they're part of that 3%. But actually what about the other accommodations? I dunno about your kids, but stress and anxiety are like a really big trigger as well as excitement because that impacts the nervous system in a very similar way. Yeah, completely the same, which we didn't realize at first. And then we clocked on quite quickly. We were like, oh my gosh. Like, especially with cash, he's really excited about, we are going on a ride at Pert Pig World of all places. And I was like, gosh, this is, yeah. We just hadn't even realized the broad spectrum of triggers. Even just something as simple as if cash in particular has not drunk enough water, that could be a trigger for him. Yeah, it's, it's still to this day and every day I think we find, I dunno about you, but we find new triggers. We're like, oh, that's a new one. Yeah. Yeah. It's constantly evolving, isn't it? And, and whenever I speak to someone who, has family members with epilepsy or lives with epilepsy themselves, it's like that constant changing, unpredictable ness of triggers, of impacts, all of those things, isn't it? Yeah, completely. And even, I don't know, just for you, like seizures, we get used to one way how a seizure presents, right? Yeah. And then the next week you're thrown another one and you're like, but oh gosh. Then we're constantly on the phone to the epilepsy nurse. Is this epileptic, is this normal? Because you're constantly decide between what is epilepsy? What is them? Just being a child?'cause let's face it, children are weird at times. They do weird things, and as parents were like, what is this? But yeah, epilepsy in itself constantly, constantly evolving. We're constantly asking questions, constantly learning. Actually, every week I would say. Yeah, definitely. And it, it's, it's exhausting mental load, isn't it, sometimes to be like, what's that? And, and especially if you have multiple kids with epilepsy. So, Kelly, tell, tell us a little bit about your story with your kids. I. Yeah, so cash was five when he just woke up one day and started having seizures. At the time, we had no idea what they were because they didn't present like a tonic-clonic. Personally, we'd never seen any other type of seizure, so we were just like, what is happening to our child? We saw, obviously medical advice, and it took us two years to finally get cash diagnosed with focal epilepsy because even. You know, every time we took him to a and e, no one knew what this was. We kind of felt like we were just butting heads with everybody. We knew something wasn't right, but we didn't know what it was. Everybody thought it was his heart. So we went through all of these investigations till eventually they did an EEG. Probably just to keep me quiet, I'd imagine. Because at this point I was like, my son keeps C collapsing. What is this? Yeah. So cash got a diagnosis and we were like, okay, what enough does this mean? We were in, well, in the midst of his epilepsy when Darla one day she'd been really poorly and she was recovering just from a sickness bug, and she collapsed. She looked exactly like cash. The same look in her right. You just know, and I thought, this isn't right. Some things are not sitting right with me. We've been here before. It was a sheer panic. I was like, again, am I going a bit crazy? What is this? So obviously we took her to a e and was kind of faced with the same experience actually, and that nobody really knew. Darla goes quite blue around the mouth. So instantly a consultant basically said that she had Raynard syndrome and that's why she was blue. And I thought, right, okay. Still something didn't sit right with me. I just knew, no, there's very similarities between mom. No, the two, yeah, the two seizure presentations. So I thought, right, I'm just gonna sit with this and see where it goes. Because actually it's just been the one episode. Let's see. And gradually as the weeks progress, she started having more and more. So I was like, this is not right. So I contacted cashier's, epilepsy nurse. Just to kind of sound off and say, look, these episodes are happening with Darla. There's quite a few similarities that I've noticed. It's that same look in the eyes. I think other parents maybe with focal epilepsy will kind of say the same. There's a distinct, I dunno what it is, but there's just this distinct look. In their pupils. So I said, something doesn't sit right with me. It's happening more often. I've kept a diary, which is really crucial actually for anybody who has questions or you're worried about anything. I kept a diary just of things that she was doing at the time, how she presented, how long it lasted. I. How she recovered and which are the key points that anyone would ask you anyway if you were going through those investigations. And luckily, we'd been through it prior with cash. And so I just called her and said, look, this is happening really regularly. It's starting to become, every day we're a bit concerned because we've been to a e, we've not got many answers, but something isn't sitting right with me. And when we're in a E, the doctor actually said to me, there's no chance. That both your kids have epilepsy and he pretty much insinuated that I was being a bit neurotic and obviously maybe a bit traumatized from everything we'd been through and I mean, to some degree yeah. I probably am, but yeah, because we weren't listened to for so long in the first place. And she was so great at like a big shout out to epilepsy nurses because we would be lost without ours. And she said to me, Kelly, if you're telling me something's not wrong, if you're telling me something's wrong, that's because it probably is. Let's just get her in. We'll review her in epilepsy clinic with cash and we'll send her for any. And she was just incredible. And she actually sent Darla for an e EEG with cash. They ended up having an ambulatory EEG on the same day, which is just absolutely hilarious with wife. Yes. Yeah. It was bizarre, but it was nice to kind of just get it all done and it was nice for them to be together because for Darla especially, she'd seen how much stress and upset we'd been through with cash. So luckily with her it was. Different because we were listened to, we had the team on our side already. They were recognizing actually that something isn't quite right. Let's just investigate it. So we're in the midst of Darla. Luckily we managed to get seizure control quite quickly for dla and her epilepsy is just kind of is in the background, but it's just, you know, being quite stable after this frantic period. And then our youngest, Camden, she was in the bath actually randomly talking about baths. She had a seizure and it was a full on tonic-clonic and it had just come out of nowhere. So we were like, oh gosh. She was only two at the time. Two and a half. So actually it's quite common at that age for children to have seizures if, you know, they're unwell. They've had a temperature. So obviously we phoned an ambulance because that's not normal. Try not to panic thinking, is this happening again? Again? Yeah. Yeah. So that started down another path. Camden essentially kept having seizures every time she was poorly, which obviously her pediatrician just put that down to, you know, she's, she's a toddler. This is what happens for me. After, you know, kind of the, we got to 10 seizures. I was like, this is not sitting right with me. Again, good old epilepsy nurse contacted her and said, well, with another pediatrician, this is what's going on with Camden. I'd just like a second opinion because it just seems a bit too much of a coincidence. Yeah. She was great. So she managed to get Camden's Care transferred over to the same team as Cash and Darla, so then we could start investigations with her. And it's just crazy that, I dunno, we've just found, even with medical professionals, you have to be seen by the right people because there's still. A lack of knowledge about the whole vast range of types of epilepsies, even with pediatricians and consultants and a e staff. Not everybody knows everything, and I think we've been very lucky with the team that we've had because we're in an unusual situation. It's not common for people to have. You know, seeing all three of their children have seizures and be on that epilepsy pathway with all three children, it isn't common and we fully appreciate that. We wish we weren't on that pathway, but that, you know, that's, it is what it is. But I just think, yeah, we're, we're really lucky with the team that we've had and the experience in a way that we had under our belt that we could push for the girls to be seen and say, Hey, we're not entirely comfortable with this situation. Yeah. Yeah, definitely. And yeah, my heart, like, you know, you feel when someone talks about their children and you know, that feeling of like, just especially, you know, the kind of, not again that's what I had with my daughter, when you just know that. You are like, oh, she's having seizures now. And like after you know what it's like with your son and, and then I can't even imagine the third, I mean, I have two children and they both have seizures, but having them the third as well is just like, come on. Yeah. Well, I kind of thought like, everyone's gonna think I'm crazy at this point, and I can assure you I'm not enjoying this. I was a bit like, oh my gosh, you're not making it up. But again, yeah, like, again, I just kept everything in a diary. I have this pink notebook and they, they do chuckle every time I go to an appointment.'cause I just get it out and I've got a section for each child. So I write, I'm old school, I write everything down. So it's there in black and white. I've got it there. So I know where I'm at with each child, what's been going on, what kind of, you know, because the appointment sometimes every few, few months. So I've got everything. Like I write down everything because I think. Also when you go to these appointments, you are so desperate for answers. You're so desperate for a fix that sometimes you forget. Actually all these questions that you have had over that three month period, you're so clinging on to just answers that you go away and you think, actually I didn't ask this. I want to know what this could potentially mean, or where are we going next? So yeah, I always write everything down, so I'm able to do that. Yeah, it's so important. You've gotta, yeah, I've got different note sections on my phone. Be like, this is my son's seizures, this is my daughter's seizures, this is my, yeah, you've gotta write it down to just think about the different patterns, think about the triggers, think about where you were, what was happening after.'cause I find sometimes the aftermath, the postictal stage of seizures, there's a whole range of different things that then happen and the impacts. And one of the things that. Sometimes it's the most, is just really hard, is when they don't know who you are afterwards. I dunno whether any of your children have had that after, but they're like vu, which is quite common in temporal lobe focal epilepsy, which is what my son has, and. He's like, mummy, I want mummy. And I'm like, mummy's, here I am mummy. And the things vu is when things that are familiar, seem unfamiliar, and all those different things where you don't realize it and you don't. Know what's gonna happen and, and I think your points about medical professionals not fully understanding the different types of seizures is something that so many of us come across and trying to, for example, one of the types of seizures, so my son has focal epilepsy as well, and often loses awareness as the impaired awareness, seizures. But then sometimes he doesn't lose awareness and he may just start limping. And so one of his legs just doesn't. Work for about two minutes, and at first you think, well, come on, just, just walk. What are you doing? I didn't realize necessarily. Yeah, it was, it was a seizure. And then even speaking to the pediatrician, they're like, oh, this is, this is different. But actually realizing, yeah, I know. I was like, he just suddenly he just starts limping and then it's for like about two minutes and then it stops and he is in a bit of pain. Bless him. And it, and then trying to explain this to, to school to be like, over the years, you know, there's been, I think he's just limping'cause he didn't wanna lose the race or something. Now it's been proven that, a pediatrician, an epilepsy doctor has said this is a type of seizure. I've told you it's a type of seizure this is a type of seizure. You have to try and convince people sometimes like that. Yeah, I completely hear you. I think with focal epilepsy, it's really hard to explain to people that have no understanding of it, how varied it is. And that actually, like cash quite often has focal aware seizures. I mean, they present differently all the time, but sometimes they're quite mild and we call, we just call them the little ones. That's ridiculous, really. We're like, oh, he just had a little one. We feel quite grateful. But we find that. Over the years, like some teachers haven't taken them seriously because they don't look big and scary. Yeah. So cash, once at school, he told his teacher he felt like he was gonna have a seizure, but because he, it presented quite mildly, she just kind of left him on his own. So he then went to the bathroom and had a seizure on his own on the bathroom floor. So then we had to explain to her again that, you know, the, these can present very differently and if cash is still talking to you and he's aware, take that as we are grateful for those ones. You still have to treat them as seriously as others. And, and like your son, cash in particular, he keeps losing control of his limbs and that's been lasting for hours and hours, so. This is a new presentation for us, so it's funny that you've brought up the leg. So Cash's right leg keeps shaking and he can't walk on his leg, and it's been lasting for up to five hours, or it's been his arm as well. And so again, this is really new. We've gone to our teens said, oh, this is happening. They're like, it's not typically epileptic. However, there's nothing about Cash's case that's typical. We need to investigate some more, but even again, trying to explain this to school, but we don't know why he's doing it. It's happening. He's got no control over it, right? We still just need to sit exactly the same and keep that care plan in place because we dunno how it'll progress. We dunno how he will recover. Will recover and like your son as well.'cause Cash's leg is violently shaking for so many hours. He's in agony, like quite often crying because the muscle is so tense and he's got no control over it. So it's really hard as parents when we get these new. Because we how to fix it. When we're trying to relay this information to. Their schools or their afterschool clubs or whatever it is. Yeah. In what capacity? It's really hard to make everybody fully understand and take it as seriously as everybody else. Yeah, and this all comes down to education because people don't know enough about the different types of seizures and actually. Sometimes cash has these seizures. For example, I do talk about cash a lot'cause his epilepsy is so we've had no control. And he has daily seizures, so his impacts our life probably more than the girls. But yeah, for, for cash, he could have one of these smaller seizures where he seems quite aware and maybe just looks a bit unwell, not quite himself, has a bit of Ledged speech. But actually those could be the ones that could then wipe him out for the whole day. So it may have lasted, say, four minutes, and then that's the one that would make him sleep for hours. And then he is had other focal seizures that have been prolonged, that have lasted an hour, and then within half an hour he's back with playing football. There's no, you can't call it, there's no rhyme or reason and it's really hard to get people to understand that it is what it is. Yeah, absolutely. And it is that unpredictability and it is that unknown ness because the brain is so complex, isn't it? And like one of the doctors that spoke at the, at the event, she was saying, you know, with meds, it's trying to put those, those caps on, in the brain, et cetera. And then, but then it could just come off, the cap could come off and then it's a seizure and all of those things. It's not getting to the cause of things, it's just kind of like. A plaster over it and trialing different meds. Again, similar I think, with my son, he's not got seizure control, you know, that we've gone through different meds and everything like that and I mean, you could do a whole episode on meds and side effects and all of those things that you like, there's so many different things that, complexities that. At the start, you have no idea about, and I just wish that people would listen and understand that epilepsy is not just shaking on the floor, flashing lights, triggering it. It's way more complex than that. And you know, that's why it's good that there's great charities, you know, like young epilepsy and Epilepsy Society and Research Institute really pushing forward with research and also creating good resources to help families understand and schools and everything like that. But I wish, wish we could fast forward it to make people understand fully, yeah. So if you, for people listening right now, what is something you'd like people to take away to, to know, to understand, to look into, to help? This is such a, we could say so many things. It's really hard'cause at the minute we are in such a difficult place, especially with education wise for cash. So for us right now, anyone, whether it be a teacher or a childcare provider, I would just ask that you educate yourself more. And if you do have a child in your care that has epilepsy. Actually get to know them, build that rapport with their family understand every aspect of their epilepsy because it's not just about the seizures, as we've touched on it, the medication, the side effects, the stress of just living with a condition that's so unpredictable, the facts, it impacts their education, their mental health, you know, their wellbeing. It impacts so much of their lives, and I don't think people even begin to realize. How much? Cassius just started secondary school in September and it has been a challenge because secondary school teachers aren't nurturing. And some of them may be, but our experience so far is he's not got that kind of safe space like he did at primary school. He's very much in left to fend for himself. And he's got these huge gaps in his learning. But the teachers, his subject teacher should we say, don't have as much care or time or want. Learn about cash and his needs and how they can help him. So that would be one thing. Anyway, there's so many. Yeah, I just. Just more understanding. And don't be afraid to have these conversations because I dunno about you, but I've found every parent that I've come across whose child has epilepsy, is so willing to speak and advocate for their children. I. Just so it can just be normal because, not that I don't like that word, but you know, just so it's not so taboo. It's not this elephant in the room because I dunno about you. Different scenarios we've been in, then we feel awkward having to be like, just so you know, cash has been invited for a sleepover or I've just got to let you know he is. Epilepsy and on I'm at the end of the phone thinking, oh gosh, are they gonna say they don't want him to stay anymore? Yeah.'cause there's such taboo linked with epilepsy. And I think if we all educated ourselves more and had more of these conversations, there would be this less like negative thing around epilepsy.'cause it is very much like your child's got epilepsy. Ooh. And it doesn't necessarily need to be like that. Yeah, yeah, absolutely. With, with more understanding, then you understand how their epilepsy impacts them because it's so different for different people. You know, you've got your three kids, it will be impacting them in different ways. And then so therefore for some, you know, they, they may find a medication and then they may be seizure free for years and years and years. Others, it may be tricky to find that for 30% of people with epilepsy, they're never gonna get seizure control with meds. And that when, I dunno about you, but at first, the first part of it, it's been like, what, nearly five years now since my son had his first seizure. And at first you hold onto that hope that maybe it's a type of childhood epilepsy. You're like, okay, right. He's had a seizure. Maybe it's febrile seizures, but even though he wasn't, actually, didn't have a temperature. But anyway, you think, oh, maybe, maybe. And then you think, okay, maybe childhood epilepsy, because you know there are a couple of types of childhood epilepsy. And then they're like, no, it's not. And then you're like, okay, well let's find some medication. Let's get the, those seizure under control and, and things like that. And then it's like, you try this med, then this med, then this med, and you have the different side effects and you have the different impacts. And then you're like, oh. And then they've, they then throw out to you, he's got drug resistant epilepsy. I'm like, okay, great. So, it's just bit by bit as you go down the journey, there's different things. What we can hold onto. And what is amazing is that, the kids, they're so resilient and amazing and they have to, I don't know about cash and, and your girls, but with my son, his brain has altered activity all the time, not just when he has seizures. And so therefore, that's why some of his learning cognition, all of those different things are impacted. But the fact that he may have a seizure, but then he goes in, gets, is there in school, you know, or doing his different activities, he's gotta overcome all of those things that are happening in his brain to make it there. But he does, it's amazing the strength and. Going through all of these different things and for the siblings and everything like that, it just amazes me and inspires me to keep going and keep fighting, keep advocating for, for them a hundred percent. I just think sometimes there's been some, we've had some really tough weeks the last few weeks, and then I think when I, I, I wait until they go to bed. You probably do the same, have a little cry and I think right. Tomorrow's a new day. We need to just crack on. I need to be strong again. And then I feel silly'cause I'm like, this isn't even me. This is them. And then, you know, then cash is getting up and he is going to secondary school and he's got all of this, the weight of the world on his shoulders at secondary school. Yeah. And he's still wanting to achieve, he's wanting to do all of this sport and he will have a seizure and then go play football for his football team.'cause he doesn't wanna let anybody down. And I think, gosh, like I could never have been like that at 12 years old. Yeah. And then I think, come on, suck it up, because they're just incredible. And I don't know where they get this fight and this determination from, but I think that's the only positive that comes out of growing up with a condition like this is that, especially with the right support around you, that these kids are growing up to be really decent. Resilient, beautiful human beings, and I think we're very lucky and they have such an understanding of the world and other people and differences, and we're lucky because that does come with it. Like that has probably been one of the positives from going through this for so long, is that our kids just accept everybody. Yeah, they understand that. Yeah, they understand and they care for others. You're saying, I dunno where they get their fight and all of that, but they, they see you advocating, they see you fighting for them and they see you, you know, really making that, that impact. And so I'm sure they get it from you. I. For sure. Thank you. So if you, yeah, so if you've been listening and you want to find out more about epilepsy, go to young epilepsy and, and other epilepsy charities too, to find out more. And you can connect. I'm sure we we're both. I'm always, if someone's like, ah, my child has just had a seizure or something like that, I'm always willing to have a chat and just kind of, you know, give that lived experience. And Kelly too. Kelly, where can people connect with you best? Yeah, feel free to, everyone keeps asking me to make an Instagram page actually about our journey, and I haven't, and I feel like I'm at this stage now where I probably should, I need to get permission from the older two obviously. But yeah, obviously please reach out on my Instagram page. That is more than okay. I think it's really great that when we can connect with these other parents in the same situation. And thanks to young epilepsy, I have been able to do that recently and it's been so helpful. Obviously we've got friends and their understanding and their supportive, but you don't get it unless you're living it. And it's so lovely to like things off of other parents like the. I've now heard of another child having an issue with their legs. Yeah. So it's really great to, in a weird way, to be able to discuss these things that crop up and also even to discuss treatment options because you might have tried something that was really beneficial for you, and we may not have tried it out of our 12 treatments that we've done. And it's nice to just, yeah, it's nice to just see other people's experiences. So yeah. A hundred percent. My inbox is always open. We could talk about epilepsy all day, right? I know. Absolutely. Yeah. Thank you so much, Kelly. It is great. Like you said, that feeling of helplessness as a mom or a parent, you know, to see your child having a seizure and not be able to stop it. I, that's, only people who have seen that it stays with you, right? Yeah. Yeah, it does. It gets me every time and it, it, and I don't think it gets any easier. And I think only other parents going through this will truly understand that feeling. And just every time the phone calls, the phone rings and it's the score and you're like. Yes. And our friends are there and we would be lost without our friends. But it's so refreshing to speak to other parents in the same situation that just that, just get it. Yeah, definitely. I totally agree. Thank you so much for chatting with me today. Yeah, just do, do connect with Kelly or I, if you're going through any of the epilepsy process or anything like that. And thank you for listening. Remember that every Wednesday there's new episodes of conversations with Send Mom on a current Little. Hiatus at the moment, but will be back in May with new episodes as well. So thank you so much and see next time.