Understanding Transitional Care in Epilepsy Audiobook
Julia a high schooler with epilepsy is going off to college. She meets Brian, a college kid who has conquered this fear before. He shares his experiences of transitioning from a pediatrician to a new epilepsy team geared toward adults, and becoming more independent in epilepsy management.
Rebecca (narrator): Hi there and welcome to a special audiobook installment of Jumo’s In My Words series - bringing our award-winning comic books to life through your speakers!
At Jumo, we produce everything from comic books that explain difficult medical conditions, to videos where families share practical insight and their stories of hope. Learning how to manage life after a diagnosis can be stressful and confusing, and we aim to make that a little easier. From epilepsy and Crohn’s disease to fractures, MRIs, and lots in between, we’ve got you covered.
To learn more about us and the cool things we do, visit us at JumoHealth.com. That's j-u-m-oHealth.com.
Ok, let’s get started. Today’s story comes from our Understanding Transitional Care in Epilepsy comic book. Julia is a high schooler with epilepsy, and the thought of going off to college and having a new doctor is pretty scary. Luckily, she meets Brian, a college kid who has gone through it all before and has some words of wisdom to share…
Julia: Okay, so, yesterday was just another normal day, But today is a freak out day! Let me start at the beginning...
Julia: I went to see my child neurologist, Dr. miller, just like I have for the past year ever since I got diagnosed with epilepsy.
Dr. Miller: Everything looks great. You will be heading off to college in a few years, Julia. We need to start preparing for this transition, so that by the time it happens, you will be all set up with your new epilepsy health care team. Let’s talk about this next time.
Julia: Sounds good.
Narrator: Your epilepsy health care team can include doctors, nurses, psychologists and other members of the medical community all there to help care for you!
Julia: Even though I said it all sounded good, I really didn’t understand what Dr. Miller was talking about!
It wasn’t until mom dropped me off at flute practice that it hit me.
Teacher: Umm, Julia, could you not do that?
Julia: Dr. Miller was saying that things were going to change. Let me tell you something, I absolutely hate change!
When I got home I tried to calm down. Origami usually helps, but not this time. My mind was racing with questions!
Am I going to get a new neurologist when I go to college?
How do I even find a new neurologist?! I love Dr. Miller! She’s supposed to be my DFF (Doctor Friend Forever)!
My current seizure control is great. Will my new epilepsy health care team know how to keep it that way?
Who is going to remind me to take my pills? I sure don’t want to take my mom to college with me!
Will I be able to do all the things my friends can do?
It all became too much. I had to get out of the house, which is why I came here to talk to you, Trak.
So, what do you think?
Silence, eh? You know, you’re a great listener, but not so good with the advice.
Axon: Perhaps I can help! I give loads of people advice all the time. Even when they don’t ask for it!
Julia: Axon! What are you doing here?
Axon: I’m here to teach you all about the transition process, which is all about you learning to be more independent and ready to become responsible for your own care. Adults with medical conditions need an adult health care team.
Julia: That’s nice of you, Axon, but it’s one thing to hear facts, it’s another to hear feelings!
I just wish I could talk to someone who knows exactly what I mean.
Axon: Excellent idea. Love that idea. Acting on that idea now!
Julia, meet Brian! He has epilepsy and is in college now. He might know how to help, and can tell you all about his experience!
Brian: Axon, buddy, warn a guy before you teleport him somewhere!
Okay, so, catching up here. Sounds like you’re about to start your transition process Julia?
Julia: Yeah, and I’m kind of freaking out.
Brian: Totally natural! Same thing happened to me, but my parents, my doctors, epilepsy support resources, and our buddy Axon helped me get through it. Now, we’ll help you through it.
Axon: Okay, for starters you should know that transition doesn’t happen overnight!
Brian: Yeah, it’s a totally gradual transition to learn to be more independent and eventually find a new epilepsy health care team.
But I didn’t know that at first, and I was so overwhelmed I couldn’t do anything but….
Narrator: Two years ago...
Brian: ….Swim! Swimming always helps me clear my head.
I was on, like, my millionth lap when...Axon appeared!
Axon: Hey, Brian! Let’s chat.
Brian: I have my appointment with Dr. Miller today to talk about this whole transition thing. Do I really have to leave her? She rocks!
Axon: Epilepsy is something you’ll always have and that’s why it’s important to have a medical team that has your back!
Brian: I guess that makes sense.
Axon: As you get older, move from being a child to an adult, and become more independent, your health care will need to change too. Your new epilepsy team will be one that is more used to working with adults than children.
Brian: But I haven’t thought about college yet! Why do we have to do it now?
Axon: You want to start the transition process early so by the time you go to college, or get a job, or move out of your parents’ house, everything is set up and ready to go.
Brian: Hi Mom. Hi Dad. This is Axon. He’s been telling me about what we’re talking to Dr. Miller about today.
Axon: Pleasure to meet you both!
Mom: Hi Axon! We’ve seen some of your work, we’re huge fans!
Axon: Gosh, don’t make me blush! Remember, Brian, The whole transition process is going to go at your speed so you feel comfortable.
At first, everything will feel a little strange, like getting your treatment from new people and places, but you’ll get used it. It just takes time!
Brian: I still don’t get it. What’s the point of this whole transition?
Axon: Ooh, great question! The aim of transition is to help you become more independent in these areas:
- Understanding your epilepsy
- Understanding and managing your medication
- Self-managing your epilepsy with confidence
- Managing your doctor’s appointments
- Knowing what to do when/if you have a seizure
- Knowing who to contact when you need help with your epilepsy
- Being able to talk to your new friends, peers, teachers, or employers about your epilepsy
Axon: Guess it’s time for us all to head inside!
Dr. Miller: Hi everyone! So glad to see you guys today to talk about the transition process. Brian, now that you are getting older, it’s time to start talking about finding a new adult-care doctor. We will all make sure we keep your epilepsy in control during this process. Sound good?
Brian: Yeah….cool.That was just the beginning. I thought it would suddenly be a flood of change, but it did take years...and it was over those years that my epilepsy health care team explained everything about transition to my family and me!
Dr. Miller: I’d like to recommend Dr. Mason to you for when you are ready to complete transition. He and his epilepsy health care team know all about young adults and the transition process. I think you are going to get along great!
Here are some resources for you to read more about transition, and a transition packet with your medical summary.
Brian: It was scary at first, the thought of having to set up my own appointments and make sure I take my medicines and stuff...but it also made me feel more grown up, which I really liked!
Everything was so gradual it just became the new normal!
Julia: That doesn’t sound so bad! But...okay, so my epilepsy is pretty under control now, won’t the transition change that?
Brian: No, things will be different, but you should expect to get the same level of care that you are receiving now.
Axon: The transition is just to make you more independent as you get older!
Julia: Okay, okay, I guess transitioning doesn’t sound so bad after all! And I like the idea of being more independent!
Axon: That’s the spirit! And remember, there are loads of resources to help you! Just ask your doctor.
Narrator: A few weeks later...
Dr. Miller: Okay, everything looks good! So today I want to talk about--
Julia: The transition process! I know, I’m excited! I brought my smartphone so I could take notes and I jotted down a few questions too.
Dr. Miller: Wow! I must say, most people aren’t this prepared. I’m impressed!
Julia: Yeah, well…I had a little help from some friends.
...And back in the game!
Rebecca (narrator): Thanks for listening! We'll be adding new episodes all the time. We also take requests, so if you have a great topic, let us know! Who knows, we may even interview you! Visit us at JumoHealth.com.
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