Rosie: Hi and welcome to the “I’ve Got This: Owning my Epilepsy” podcast series. My name’s Rosie and I’m here with Professor Ingrid Scheffer. Today’s episode is called “No More Cotton Wool”, where we’ll explore what it’s like moving from the pediatric to adult health service. 

My name is Rosie. I’m 22 and I’m from Melbourne. I was diagnosed with epilepsy ten years ago and have absence seizures.

Ingrid: My name is Professor Ingrid Scheffer, I’m an epilepsy specialist. I’m a paediatric and adult epileptologist which means I’m a specialist neurologist who works almost entirely in epilepsy.

There are lots of challenges in growing up. Rosie, tell us about what you remember about changing from pediatric services at the Children’s Hospital to adult health care. What was challenging? What was hard? What was easy?

Rosie: Yeah, it was a bit of a shock, moving from the children to the adult. You know, I went from being one of the oldest kids in the waiting room. You know, there were babies and toddlers around me, to being the youngest. And, you know, at a different hospital somewhere that I hadn’t been before. So it was a little bit of a shock.

And I also was seeing a new neurologist, so I was probably a bit nervous for my first appointment because I had such a great relationship with my pediatric neurologist, and I wanted the same for my adult neurologist. So yeah, I was definitely probably a bit nervous for the first appointment, but…. because I think you just don’t know.

You don’t know what to expect. And yeah, going from the children’s where it’s very like, you know, kind of fun and different and then you’re in a different building, and it’s a bit more serious, but it gave me a sense of independence because I was, you know, getting to this new hospital by myself, or I wasn’t. I think my parents came with me the first time to meet the neurologists and make sure I got there.

But it was something that was then sort of up to me, and they didn’t really come with me, partly because I didn’t really want them to come with me, but they also just didn’t really need to because, yeah, it was different to what it was like before. But yeah, that was sort of what I remember from, from changing from children’s to the adult service.

Ingrid: So going from colourful to clinical really?

Rosie: Yes, definitely.

Ingrid: What about what would you tell your younger self to do differently? You know, what did you learn through it?

Rosie: I would say that it’s still important or it’s okay to have your parents involved. I mean, I have a sister who comes with me to my appointments just so I don’t forget to ask things. And, you know, I only see my doctor every year. So, you know, if I forget to ask something, you know, it’s a while till I see him again.

But, you know, you don’t have to get rid of your support system completely. You don’t have to go by yourself and sort of take charge of it fully by yourself. But yeah, so if you have, you know, maybe you can if you have a family member that you want to come, they can still be there, or you can still talk about it with your family.

So don’t feel like you have to cut them off completely once you go to the adult service.

Ingrid: I couldn’t agree more. I think it’s funny, but I think a lot of young people think “I’ve got to own this. I can do this without Mum and Dad”. And I have to say I hate it when I have an adult walk in with that, without a family member, because they can’t describe their own seizures. You need a witness.

And the best eyewitness is often a parent or a sister, like a sister. And the other really great thing about what you said is if you take your sister along and you don’t hear everything that’s said, that maybe you have a seizure even, then at least somebody else is listening, a second pair of ears, and you can go away and chat about and say, is this what the doctor said or did I get that wrong?

So I think it’s a really wise way to come along with someone.

Rosie: Yeah.

Ingrid: What other issues have you thought about in your epilepsy management that have come up as an adult?

Rosie: Um…… a couple. Well, because I’ve sort of begun to manage it more myself, I have made mistakes, sometimes forgetting to refill my medication in time, a few times and, or actually, maybe not getting the dosage right and then kind of having trouble, fixing that. But that kind of just comes with it. And, you know, I think it’s for me, it was okay to slip up a couple of times. But if I could go back, I would maybe put some things in place.

Ingrid: Yeah, I think they’re great points. And I think one of the biggest issues for young people is driving. And you can’t afford to slip up with your medicine if you want to stay on the road. And so I do think that transition of ownership, of taking medicine, of making sure you have enough medicine, is a really important rite of passage into a grown-up life.

And I find that lots of adolescents are ready for that at different ages. So some people are ready for it at 15 and some might be 16, 17, 18. Usually before 15 they’re not up for it because they just don’t have the organizational skills. It’s got to do with the brain maturation. One of the biggest challenges in looking after adolescents and young adults is adherence, and that means remembering to take your medicine on time as close to as possible.

And so there are a number of strategies that I, um, suggest when I work with my young adults and that is to use a dosette if they’re still at home with their parents, often the parents might be reminding them all the time. And that can drive the adolescent and young adult mad. And so what I suggest is sort of a deal between the young adult and their parents.

And I say get a dosette, which is those pillboxes that you think of grannies having. And they have a row of morning and evening Monday to Sunday. And I say, well, now the young adult has to own their epilepsy. And one of the things they can do about that is to keep the pillbox full, and then remember to take the medicine before the parent nags.

And then we agree on a set time. Say the young adult leaves the house by quarter to eight in the morning, the parent can’t nag until half past seven. So the young adult controls the situation, if they take their medicine no nags. And if they don’t take their medicine, the parents are allowed to nag because otherwise, the parents are incredibly anxious that their child will go out and have a seizure somewhere in the community and be at risk of hurting themselves.

And it also helps the young adult to take full responsibility. I own my epilepsy.

Rosie: Yeah, definitely. I think I found that it was really important also to have a routine. So as soon as I was told, you know, you have to take medication in the morning, I would always take it in the morning or as soon as I woke up and it just became habit, and so that’s really important because it can be easy sometimes to forget, you know. And if you’ve got things going on like sport before school or something like that, then yeah, you can forget to take it.

But having routine or having, a dosette, particularly if you have lots of medication, lots of pills, which I did and many people do,  I think it’s really important to do even small things. So you’re organized and yeah, so you don’t have your like Mum and Dad nagging you to do it, and yes, I found the routine also really important that I knew it was after dinner and in the morning you just get into the habit.

Ingrid: I think some of the things around that are having the pills somewhere you remember to have them so by a toothbrush or by, where you have your meal. The other big help can be an alarm, and that can be an alarm tailored just to medication or just a regular alarm in your, in your mobile. And that can help you to remember. The other big issue, of course, is going out at night and um being up late and being sleep deprived. And that can put you at much greater risk of having a seizure. So it’s good to always have it before you go out at night. Make sure you do. And if that means it’s an hour earlier or something, just to ensure you’ve had your medicine because you’re going out a bit earlier, then do it or take it with you have some of your tablets in your purse or your wallet.

Rosie: Yeah, I would always have that. Or even some like in the bottom of my school bag in case I stayed at a friend’s place or, you know, because you never know. And it’s always good to have it because it just adds a level of stress when you realize you don’t have it and you don’t know if you’re going to get home, you know, at a different time.

So it’s always good just to have a back up.

Ingrid: Great idea.

Rosie: Alleviate stress. From your perspective, from when you are moving to the adult service and more of the admin side, because that was definitely something that I had nothing to do. You know, all the letters would go to my parents or they would kind of set up the appointments. What would you say? What advice would you give to young people who want to take control of that?

I don’t have any experience in sort of knowing, like communicating with the neurologists or with the health care system, because sometimes it can be difficult to navigate the system. But what would you….?

Ingrid: I agree completely. I think often the young person has not been watching at all what mum and dad have been doing and they’ve made the appointments and they’ve got the letters and they, so the first thing is I talk to your parents, they may have a file of you of medical records. Many doctors now will copy every letter to the parents.

I do, but other doctors won’t. So if your parents have a record, I would take a copy I’d leave them with the original. Just in case you move house and you lose it. And then I’d have your own copies, and then I’d start to read it and maybe look up a bit about it. I learned a bit more about it, but I think it’s really important to know that you can’t know that early stuff.

You were a kid, and so you talk to your Mum and your Dad, ask them what they remember, ask them when it happened and try and get a deeper understanding. And then in terms of making appointments again, it’s around owning your epilepsy. Make the appointments. When you leave an appointment, don’t just hope they’ll send it out. The systems never work.

Make your own appointment, put it in your diary. Check a month before it’s still on, and then turn up and make sure you turn up. One of the problems is when you don’t turn up, you get lost in the system, never to be found again. And in your…. I’m joking… you can get found again, but people don’t. You’ve got to you’ve got to own it. Nobody else owns it. It’s your disease.

Rosie: Yeah. It’s up to you.

Ingrid: It’s up to you. Which is a scary thing, actually. I think that’s the whole of growing up, though, isn’t it? Suddenly you got to earn a living. You got to live a life. It’s all up to you.

Rosie: Yeah, I remember, actually, when I was 20, a couple of years ago, maybe… I created this binder and I tried to find everything from my Mum that had all the notes. Yeah. And had scripts and refills and notes from VicRoads and all this type of stuff. And I just put it into this binder to make it easier to find. 

I still probably don’t have everything, but it was easy because at least I can look through and if I don’t have it, then maybe she has it. Or I can ask the doctor and be like, I didn’t get that. Can you send that? Because that’s just it really collects over time and you don’t realise how much paperwork there is until you see it.

Ingrid: I think you’re extraordinary. I think an awful lot of young people don’t even think about it. They move out and go, yeah, I’m out. And then they don’t actually think about this issue. But tell us, did you ever run out of medicine?

Rosie: Yeah, a couple of times. I mean, I was able to, my pharmacy knows me pretty well so often they sort of gave me an emergency one because they knew I needed it and it was coming in the next day. But a couple of times I did underestimate that it’s not always at the chemist, so I can’t just rock up the morning of and say, oh, I need it, you know, for tonight.

So I definitely realised that sometimes the hard way. But I was quite fortunate in that I sometimes was able to miss one and it didn’t, it was sort of okay, but it definitely is not a good habit to get into, and I realize that you need to be more, I had to be more organised so that I didn’t, repeat that too much because it’s not a good habit to get into, and it’s just not there for you.

Ingrid: You’re right that you were very lucky with that because some people miss one tablet and they have a seizure. And you can imagine if you’re driving and you miss one tablet and have a seizure, then you’re off the road for six months and if you miss it, do it multiple times, you might be off the road for two years, depending on, on your type of epilepsy.

So you just can’t afford to miss one. You need to have spares everywhere. And I sort of think it’s good to keep a box ahead of yourself. Always.

Thanks for listening! Don’t forget to share and subscribe, so you can catch our next episode, “Healthy Mind, Happy Life”, where Rosie and Ingrid discuss mental health and epilepsy.

This podcast has been produced by Lateral Connections with support from Eisai Australia. The information in this podcast is general in nature and not intended to replace the advice of health care professionals. Please see your healthcare professional for any specific advice.