S4E1: Kleine Levin Syndrome: Parenting Through The Challenges

In this heartfelt episode of Narcolepsy Navigators, Gabrielle and Paul share their family’s journey of raising a child with Kleine Levin Syndrome (KLS), also known as “Sleeping Beauty Syndrome.” Speaking openly about the uncertainty, the emotional toll, and the small victories, they offer listeners an inside look at how KLS impacts their son’s daily life — from sleeping 16–20 hours a day during episodes to rediscovering joy when awake.

The conversation touches on:

• The challenges of finding a diagnosis in rural Maine.
• Navigating school, healthcare, and family life with a rare sleep disorder.
• What support systems truly mean for children and parents.
• Why raising awareness of KLS is critical to changing perceptions.

This episode is not only a story of resilience and advocacy, but also a reminder of the importance of community for families facing rare conditions.

Listen in and be inspired by their courage, honesty, and determination to give their son the best life possible.

Episode Out Now

Link: https://www.napsforlife.com/podcast/episode/80bdf6b0/s4e1-klein-levin-syndrome-parenting-through-the-challenges 

#KleineLevinSyndrome #KLSAwareness #RareSleepDisorder #NarcolepsyPodcast #ParentingRareDisease #SleepHealthAdvocacy #ChildhoodSleepDisorder #InvisibleIllness #RareDiseasePodcast #KLSParentsPerspective #RareNeurologicalDisorder #IdiopathicHypersomnia #LivingWithKLS #RareDiseaseAwareness #SleepDisordersCommunity

Transcript

[00:00:00] 
Introduction to Narcolepsy Navigators
[00:00:00] Kerly: Hello, welcome. You're listening to season four of NAR Lipsey Navigators, brought to you by NAPS For Live CIC. Narcolepsy Navigators is a podcast for raising awareness of these fascinating illnesses through a deep dive into the lives and individuals living with narcolepsy, idiopathic hypersomnia and Klein Levin syndrome. I'm Kerly Bwoga, the founder of Naps for Life, CIC, and welcome to our stories.

Meet the Hosts and Guests

[00:00:42] Kerly: Hi everyone. Welcome to Narcolepsy Navigators. I'm Kerly, your host.
[00:00:47] Sakhara: Hi, I am Sakhara your co-host
[00:00:50] Kerly: and today we are here with Gabrielle and Paul.
Discussing Klein Levin Syndrome
[00:01:01] Kerly: And the topic today is Klein Levin syndrome from the parents' perspective and welcome to [00:01:00] their story. Hi Paul. Hi Gabrielle. How are you?
[00:01:05] Gabrielle: We are doing okay.
[00:01:06] Paul: Doing good.
[00:01:08] Kerly: And how's your weekend been?
Personal Experiences and Challenges
[00:01:11] Gabrielle: It's been a little stressful because our son is currently in episode. He may be coming out of it 'cause he's actually stayed awake a lot longer today than he has, but he's been in episode since the beginning of the week.
[00:01:27] Kerly: Okay. And Sakhara, how was your weekend?
[00:01:32] Sakhara: My weekend is going well. It's a long weekend. I'm still recovering from my trip that I took in dc . So I've been resting a lot. What about you?
[00:01:41] Kerly: Yeah, this weekend's been good. Yesterday was wake up narcolepsy. They had a conference, so I attended virtually, which was nice. And getting some new contacts and things like that. It was interesting. It was even better than last year. So very good speakers that was [00:02:00] there. But one of the speakers, the first one, I had a sleep attack while.
[00:02:05] Kerly: He was speaking. And then while I was in the sleep attack, I could hear his voice and the presentation in the background. And so my brain took me there. And so I thought that I was at the conference. And so then I kept waking up, and then I was like, why did these people keep going into the queue before me? Cause in my mind, in the dream, I was at the conference and I was waiting in queue to speak, to ask a question, and then my body would wake me up and then I'd hear someone else's voice asking the question, and I'd be like, why is it that everybody else keeps getting into the question before me and I realize I was asleep. Yeah. Yeah. That was really strange.
[00:02:49] Kerly: I was gonna say, how often does he go into an episode
[00:02:52] Gabrielle: this year has been rough. He is, since [00:03:00] 2025 has started, he has barely made it a full week. Without. Then the following week he goes into episode, so he's literally slept half of the year away already. Wow. Yeah. And it's hard to watch because he's so young. I'm sure it is devastating for adults as well, but watching your poor kiddo and just be like, oh, you should be like outside. It was beautiful the other day. Just outside playing and he just can't.
[00:03:34] Kerly: Gosh.
Diagnosis Journey
[00:03:35] Kerly: And how long before you got the diagnosis, was he having his symptoms?
[00:03:40] Paul: Oh, it was amazing actually. 'cause we have, I will say, some of the most amazing doctors that. Helped us, guided us, pushed everything through for us. But it was probably three months.
[00:03:55] Gabrielle: We started really noticing something in February of [00:04:00] 2024. We think that it may have really been starting in like November. And he just seemed like he was getting sick a lot and he's homeschooled. So we were trying to figure out, how is he getting sick all the time? He's not around a bunch of other kids. So we were trying to piece it together and he was just sleeping so much. And then February rolled around and again, I thought he was just sick, not feeling good. He was sleeping really late, but then they were just lasting and it was March that we really were starting to get concerned because he was sleeping, I think. The one day was 20 hours and that's when we went into parent panic mode of what's happening. We were wondering if maybe it was like his blood sugar, like could he be, diabetic or something along those lines. We had no idea 'cause we were just watching him sleep and you couldn't, we would try to wake him up to see if [00:05:00] you wanted to eat. You haven't eaten in 20 hours. It just was, so challenging to watch.
[00:05:06] Paul: It was. And he was a trooper through all of the testing, all of the doctor's appointments cause they tested. Everything, blood levels, they tested for
[00:05:17] Gabrielle: strep, mono,
[00:05:20] Paul: Lyme disease. They, they were testing everything, MRIs, like this whole gambit and for a 9-year-old at the time. That's a lot to go through.
[00:05:30] Kerly: Yeah.
[00:05:30] Paul: And like I said earlier, the doctors that we deal with, the nurses his pediatric office truly were absolutely amazing to help us navigate and get us lined up. And then his neurologist helped fast track some stuff for us. Yeah.
[00:05:48] Gabrielle: I really credit the neurologist because we shouldn't, he shouldn't have been seen until that July.
[00:05:58] Paul: No.
[00:05:58] Gabrielle: And she. [00:06:00] Fast tracked it so that we got to see someone in May. So that was really beneficial and helpful.
[00:06:07] Paul: And it's so funny because we live in Maine and obviously we're in the middle of, it's to say God's country up here, we're all by ourselves, ocean on one side, Canada on the other. But a lot of our great doctors are down in Boston and that was one of our big concerns was are we gonna have to go to Boston for all this, three hours away? And we were fortunate for all the doctors that we had are some of the best specialists that you can have in Maine in what they do for kids
[00:06:41] Gabrielle: which is really challenging to come by in Maine.
[00:06:44] Paul: In Maine it's really hard. And we had the best. Big specialist doctors that were right there with us on this journey. And they helped us out a lot. We did cheer when we found out his diagnosis. [00:07:00] We, did cheer. I will say that we did , as odd as that sounds, but we knew what was wrong now.
Living with Klein Levin Syndrome
[00:07:04] Paul: And now we've been almost a year now of navigating the waters, so to say. Yeah. Of, when is, can we tell when he's going in an episode or, all these little things , in this continuation and, it's a battle. Every day that he's in an episode, when's he gonna wake up?
[00:07:27] Paul: When's he gonna want to drink something? When's he gonna want to eat something? He has his favorite food when he is in an episode. Yeah. Mac and cheese. Mac and cheese.
[00:07:35] Gabrielle: He wants
[00:07:36] Paul: mac and cheese when he is in an episode. So we gotta make sure we got mac and cheese made on hand. And, it's it's a life change, but at the same time it's really good.
[00:07:45] Paul: He's in, on every decision that is made about his KLS. We don't just make decisions for him. Everything goes through him and to make sure that he feels comfortable with everything. And there's medications out there [00:08:00] supposedly but there's no real proof of him yet. And he doesn't wanna do any medications, so we're like, okay, we're not gonna do medications. We leave it up to him because it's his body. And we feel that, like again, he's 10 and he's homeschooled, so we're pretty lucky with that that we're doing that. 'Cause now he's not losing a lot of time at school and getting out back.
[00:08:23] Gabrielle: We can just make it up. He's basically missed all of this week. That's fine. We'll just make it up, throughout next week. So he doesn't have the normal vacations, like february he had an episode. So instead of when the kids up here would normally do like a February vacation, we just did his schoolwork so that we make sure that we stay on par with the laws up here in Maine for homeschooling.
[00:08:49] Kerly: That's really good. Alright. Okay. Let's rewind a little bit. . Introduce yourself to everybody. How old is your son and what [00:09:00] state are you residing in?
[00:09:01] Gabrielle: Yeah, my name is Gabrielle, my husband Paul. Our son Jet is 10, he'll be 11 in August and we live in central Maine.
[00:09:15] Kerly: Okay. And.
Medical Support and Community
[00:09:19] Kerly: Would you like to describe Klein Levin syndrome to anyone who doesn't know what that is?
[00:09:24] Gabrielle: Sure, yeah. I know I feel like I've turned into a, self-appointed spokesperson up here because a lot of people we know when we say our son is in episode, 'cause that's what we refer to it as, a lot of people just automatically assume behavioral. Were like, no, he sleeps, between 16 and 20 hours. So he would just diagnosed almost a year ago with Klein Levy Syndrome. KLS. I don't like referring to it as. The nickname is Sleeping Beauty Syndrome. And from a lot of the support groups that I've been in, [00:10:00] there's nothing beautiful about it. So we're trying to get that little nickname to go away. It's a neurological disorder where his brain will basically just tell the rest of him to shut off and he sleeps. And he's currently in episode, he is currently awake, which is nice. But the week started, he was getting up around 6:00 AM roughly when I get up. He would eat something and around eight or 9:00 AM he was back asleep until around dinner time.
[00:10:39] Paul: Yep.
[00:10:39] Gabrielle: And yesterday he fell asleep around noon and slept all the way through until about two 15 this morning. Wow. Yeah. Yeah.
[00:10:51] Paul: , It's a wild ride to say the least.
[00:10:56] Kerly: Before we talk about that let's go back to [00:11:00] what year was he diagnosed and when did you first. Noticed that something was different.
[00:11:06] Gabrielle: Yep. He was officially diagnosed in May of 2024, so we're about to come up on his year anniversary, if you will. We didn't fully notice anything until, till February was when we started. Yeah. Feeling like something was off . March of 2024 was when we really knew something was wrong. In hindsight, looking back, we think that it started in November,
[00:11:39] Paul: and with the thing with November that we really didn't catch really a lot of it is October of 2023 is when Maine had the big mass shooting up here. And the mass shooting happened 300 yards behind our house.
[00:11:56] Paul: So it was a very anxious [00:12:00] time and a very stressful time for everybody in our town. So being a nine-year-old little boy and having this happen and it, all the news cameras and the police around in November, we really didn't think too much because it was like, oh, it's just a little bit left over from this. Or could it be like
[00:12:23] Gabrielle: Aftermath of all this happening and trying to process And December was fairly, yeah. He was pretty much himself January, he was starting to like, just seemed like he always. Was tired and didn't feel good. And we were like he doesn't have a fever. He's not really coughing.
[00:12:44] Gabrielle: So we just were like we live in Maine. It's like just dreary from yes. Basically you hit November and until about now you're just okay. Icky. In February I had started sending pictures to my mom [00:13:00] 'cause he moved so much in his sleep, so I was being silly and I was like, oh, the many sleep positions of Jet.
[00:13:06] Gabrielle: And I was sending them to her. And then I was doing the same thing in March. And I'm so thankful that I did because we were able to go back through and look and get a fairly detailed. Picture of what was going on. Because if I wouldn't have had those texts back and forth with my mom, I would've had a much harder time giving the doctors like a proper timeline, because once we really knew that something was wrong, like everything just squishes in your brain and it's really hard to pick out those small details that for us, ended up really helping the specialist be like, yes, that is what it is.
Coping Strategies and Daily Life
[00:13:53] Kerly: So what was your light bulb moment that you knew okay something's wrong with Jet. [00:14:00]
[00:14:00] Paul: So funny. I shouldn't say funny, but we look up back on it and laugh about it now, but he was sleeping and a friend of ours her husband is diabetic and they had an extra kit that they never used and. To test for blood sugar. And we were like, oh, I wonder if his blood sugar's off. And so we called her. She came over with it and tested him and it was like perfectly, his blood sugar was perfectly fine. So we had called the doctors to, and obviously it has to happen when the doctor's office is closed 'cause we all know that's when everything happens.
[00:14:36] Paul: But while we were waiting for a call back, she went online and literally typed in why is my child 9-year-old sleeping for 20 hours? And KLS is the first thing that popped up. And she didn't go down the rabbit hole. She read it. And the majority of everything hit other. And it dawned on a
[00:14:58] Gabrielle: other than a few markers, like it is [00:15:00] generally, it's diagnosed more in.
[00:15:04] Gabrielle: Adolescent males. Yes. They're also trying to get that statistic looked at a little bit more, because there are a lot of females that also, but it seems to be a little more prominent. So he didn't have that. 'cause at the time, he was only nine, so there were a few markers. But nothing, I think I didn't Google that until after our first ER visit, yeah. We had gone to the ER and everything was coming back. All his tests were coming back clean, nothing. So we're sitting there and we're like, okay. And he almost slept through a blood draw at the er and he did wake up and we got home. He was awake for a little bit, and then it was like deja vu the following day. He just went down and we didn't. Know what to do. And so I had Googled and , all I did, and I looked at Paul and I was like, I'm not gonna go [00:16:00] down the rabbit hole. I said, however, and I printed it. 'cause I was like, this sounds like what's been happening for the last few days. This is almost to a t what's happening other than the fact that he's not a teenage boy.
[00:16:15] Gabrielle: Like he's just he's younger. I was like, but it doesn't rule it out. So we had, I think once we got in to the pediatrician maybe, and it was actually the, it wasn't his regular pediatrician, it was the it's a couple that owns it and it was the. One of the owners, and I did present him with it, and he's I can't, yeah.
[00:16:47] Gabrielle: He's that's out of my realm. He's I wouldn't be able to diagnose it. He's I don't have enough knowledge. He's I'm not ruling it out though. Yeah. So nobody shot us down immediately. The way he put it in a [00:17:00] really good way, he's first we are gonna test and rule out all the big bads, so he's so the fact that his panels and everything are coming back looking great, yes, it may be frustrating, but at the same time it's great because that means it's nothing more. Intense or scary. Yeah. And then we also did ask about a behavioral aspect and he goes, that's the last, yeah. He's that's the absolute last.
[00:17:27] Gabrielle: And he equated it to like, when you play Clue. And I looked at him and I said, okay. I said, so you're saying if everything else gets ruled out, then we're gonna decide that we have to go into the kitchen with Colonel Mustard and figure out like it was a spatula. Like that kind of thing. And he was like, exactly.
[00:17:44] Gabrielle: We're like, okay. Like I like that he put it in relatable terms for us.
[00:17:50] Paul: And when we met with him, Dr. Glass, he jet walked in. Yeah. To, that's right. The pediatrician's office. Every other visit that [00:18:00] we had during this time leading up to that appointment, we always carried him in 'cause he was sound asleep.
[00:18:05] Paul: But he walked in and we sat down with Dr. Glass and they had gotten together that morning. All the doctors. And in the office and to figure out what was going on and their next steps for us. And he had to do a quick neurological exam with him and he did it. And then
[00:18:25] Gabrielle: because he said, he's you look like you're getting bored.
[00:18:27] Gabrielle: So he decided to like, and get up and do Yeah. What he needed to do.
[00:18:32] Paul: And then Jack climbed up on the table and fell asleep right in front of him. Just like that. And he was like, wow. And then we carried him out.
[00:18:39] Gabrielle: Yep. And the medical assistant that had brought us in, she watched us carrying him out.
[00:18:46]  : Yep.
[00:18:46] Gabrielle: She was like, he was bebopping into the office and we're like, yes, this is what happens like
[00:18:53] Paul: with KLS you'll see a lot, I don't know if you look at the groups online, there's some I don't belong to [00:19:00] anymore. I got really frustrated inside the groups 'cause people were self diagnosing themselves.
[00:19:05] Paul: Which I don't like. But when an episode happens and what really had us going too, 'cause we were also thinking could it be narcolepsy? Because he would just fall asleep. He'd have no warning, no nothing. He'd just go sleep and he'd be sleeping and he is down. So it was like this really odd time. And with KLS being such a rare disorder out there, I think the last stat that I read was an average of 11 to 1300 people in the world.
[00:19:39] Paul: Out of 8 billion are actually fully diagnosed with KLS. And then the children that are below that threshold of adolescents is so minute. If I can remember the stat off the top of my head, out of that 11 to 1200 is only like 26 to 28 children under the age of 13. That are [00:20:00] diagnosed at this time that they know of. With KLS and being so rare you don't know what to expect. And even when you look at things online about it or different things to do, or there's not much they're trying all kinds of medication. I know Adderall
[00:20:20] Gabrielle: I think Ritalin was another
[00:20:22] Paul: one, Ritalin's another one. They're talking about Lithium all these different medications.
[00:20:26] Paul: Ativan. Ativan is another one for people to take, but there's not enough people.
[00:20:31] Gabrielle: There doesn't seem to be a lot, and there doesn't seem to be a lot of proof backing it up. When , the pediatric sleep specialist, when he did diagnose him, he said that we were fortunate that we were already homeschooling him at the time.
[00:20:46] Gabrielle: And he was like, my other patient that he had that was diagnosed with KLS, she was taking, I believe it was Adderall to try to keep her awake during school. And he looked right at us and he was [00:21:00] like, but I don't really wanna medicate him if you don't. We were like, not particularly. He's then literally let him sleep it off.
[00:21:09]  : Yep.
[00:21:09] Gabrielle: And that's just what we have to do. And I think it's still challenging sometimes for friends and family to really, a lot of them still haven't seen. It in person. So we just had to let everyone know if, we have plans and jets involved, like it may have to be tentative.
[00:21:28] Gabrielle: He may not be able to join because we're not going to cart him around. Yep. Sleeping one of his friends was like I can make him a spot in my room. We're like, yeah, that's really sweet. We didn't wanna do that to him.

Family Dynamics and Support
[00:21:44] Kerly: I wanted to ask and then Sakhara, you can ask some questions.
[00:21:47] Kerly: I wanted to ask when they did all the blood tests and everything and they ruled all the big guns out. And then after that, did they do any neurological tests like MLST [00:22:00] or Poly Sonograph test, anything like that? Were they attach the electrons to his brain?
[00:22:05] Gabrielle: They did not. . She did some standard tests. She had one fairly large machine. I don't know what exactly it was.
[00:22:12] Paul: Yeah.
[00:22:13] Gabrielle: I was still, my anxiety during that. The neurological appointment was the one that I think really had my anxiety high. She mentioned a couple of things and because she saw a couple things, she fast tracked it to the sleep specialist.
[00:22:27] Paul: Yep.
[00:22:28] Gabrielle: But she also let us know that it wasn't, it may not be the last time we saw her, so she left that door open. If we don't find anything, if the sleep specialist isn't really gonna, doesn't find anything, she's you may have to come back to me. And then they may have done more of the,
[00:22:47] Paul: in our local hospital did his first MRI.
[00:22:52] Paul: And I've had a few of 'em, so I explained to him very. Matter of factly about, Hey dude, like [00:23:00] you're gonna lay on a table, they're gonna put a cage over your face. You're gonna go in And he was a trooper through all that. So they did all the brain imaging and sent all that to everybody and it, we thought, putting the electro and things like that, I thought that was gonna happen.
[00:23:17] Paul: But they didn't do it. And
[00:23:18] Gabrielle: it could we, yeah. Just finally so his, the sleep specialist that diagnosed him left that particular practice and now the practice they are at will not see any children under the age of 13? No. So I got a little frustrated because the front office wouldn't even put a note through.
[00:23:39] Gabrielle: I was like, could you just see if he would even just speak to me briefly? We just got a call back. Yeah. The main sleep institute, they have a pediatric sleep specialist. Yep. Yep. So we have an appointment in July. We're not, when the girl is [00:24:00] setting up the appointment, I was like, you're gonna wanna let the doctor know that he has been diagnosed with Klein Levy syndrome.
[00:24:07] Gabrielle: Yep. And she goes, I'm not a clinician, so I'm going to need you to spell that and explain it. I was like, okay. So I did. And I was like, he sleeps between 16 and 20 hours when he's in episode. She was like, oh, I will make a note of that. We were like, yeah, we, I mean we do, we get that a lot. A lot of people don't and we still sometimes have a really hard time like fully grasping it.
[00:24:34] Gabrielle: 'cause I think he got diagnosed in May of 2024 and he.
[00:24:40] Paul: Was episode like, was
[00:24:41] Gabrielle: episode free almost the entire summer.
[00:24:45] Paul: Yep.
[00:24:45] Gabrielle: And so we were sitting there for a little bit, we're like, maybe they got it wrong. This is cool. But this is weird. And then, was it November? Yeah, November right
[00:24:58] Paul: after Halloween.
[00:24:59] Gabrielle: Right after, [00:25:00] like roughly right after Halloween. He boom. Yeah. Into an episode and we're like, okay. Fuck,
[00:25:06] Paul: we're not
[00:25:06] Gabrielle: crazy. Almost like that. Like it was an odd feeling 'cause we're like, okay, so we're not gonna have to seek some, but it was just a really bizarre feeling that he went several months.
[00:25:17] Gabrielle: So we're maybe he'll be great during the summer, but that was one of the most, like, where we were like, maybe they like quick triggered too fast. They, but then he went right at, it was like a couple days after Halloween, he was down for I think 10 days.
Future Hopes and Reflections
[00:25:36] Sakhara: When your son is having an episode, are there signs that one's coming on, and if so, how do you prepare for it? 
[00:25:46] Gabrielle: not exactly. We're starting to see a couple what I refer to as like a marker? We started calling it, we'd be like, do you feel heavy? Because we asked him finally, like once he had the diagnosis, we're [00:26:00] like, what does it feel like when you're about to fall asleep? He's I feel like I have too many blankets on. We're like, so heavy. He is yeah. So for a while we would refer to it. We'd be like, just give into the heavy, don't fight it. Don't fight it. Just give in. Now when we ask, he gets very irritable now. 
[00:26:23] Gabrielle: Yes, I'll say. Do you feel okay? Yeah.
[00:26:27] Gabrielle: Do you think you're going into an episode? No, I'm fine. And an hour later he's, and it's so I just smile. I'm like, okay. maybe, yep. You're just having an attitude. 'cause your mom's asking, but he is no.
[00:26:40] Gabrielle: And physically, yeah. He's a very pale child. Oh yeah. He has some French Canadian and some Irish. He's a pale kiddo, so he already has dark circles, as do I. When he's in episode or about to start one. They are almost [00:27:00] purple like they are. So we were able to go out to lunch with his nana today, and just seeing him outside and in different light, he just, looks exhausted.
[00:27:13] Gabrielle: That's the other thing. That's, you sit there and he looks exhausted. Even though he's slept, 16 hours at a time 
[00:27:21] Paul: and, preparing is probably, 
[00:27:26] Gabrielle: I think that's the most challenging. That is 
[00:27:27] Paul: super challenging. The good news is me and her work, different work schedules. So I go to work really early in the morning.
[00:27:35] Paul: And then she goes to work in the afternoons. So there's one of us, we don't have to find someone to watch him. And no one's ever watched him when he's been in an episode besides one of us. Yeah. We haven't done it because when he wakes up, he's a little confused as to where he is and what's going on.
[00:27:51] Paul: 'cause he is, but preparing for it, the biggest thing is, making sure we have chicken nuggies. 
[00:27:59]  : Yeah. [00:28:00] 
[00:28:00] Paul: Mac and cheese cosmic brownies. Those are some of the things that like. His body. I don't know if it's his body saying he wants it. 
[00:28:09] Gabrielle: I did read that. Sometimes people that have Levy syndrome, they will gravitate towards it can be someone that absolutely hates sweets normally, and that's all they want to eat when they're in episode.
[00:28:23] Gabrielle: So we've just found, we think he likes the mac and cheese 'cause we can make it and then we'll portion it. So if he wakes up at two o'clock in the morning, he can go to the refrigerator. Yep. Heats him up real quick and go back to sleep. If that's what he wants. 'cause when he first was going through it, he was feeling badly about having to wait.
[00:28:44] Gabrielle: Pick me up. And I told him, please don't like your little body needs and he's skinny. He has a very high metabolism. So you sit there and you're like, you need to eat. Like I will make you whatever you want. The other morning, I think it was [00:29:00] six o'clock in the morning, he's I really just want mac and cheese.
[00:29:02] Gabrielle: I was like, okay. He'd eaten all the leftovers. I was like, all I was like, let's do it. He's but it's morning. I said, I don't care. You're hungry. You've been asleep. I think at that point it was 18 hours. Yeah, like you need to eat When your body is telling you to 
[00:29:17] Paul: and preparing. Sometimes you can't really prepare because the episode just comes on, and so a lot of it is me and her just working together. Like I'll be coming home from work and being like. What do we need from the store or, she actually works at a grocery store.
[00:29:33] Gabrielle: I work at a grocery store, so
[00:29:35] Paul: she'll get outta work and grab whatever we need. And that way we have food in the house. And then there's always one of us here. And it gets preparing sometimes, like last night I'm off right now for today and tomorrow.
[00:29:51] Paul: So he fell asleep on the couch and I told her, I said you go lay down. I'll lay in my recliner and [00:30:00] I'll, Sophie wakes up, I'm right here. And he ended up waking up and me and him watched some wrestling on TV and, relaxed a little bit. But that's how we prepare. We just roll. It's like playing ysi and rolling for a ysi. Yeah. We just go, Hey, let's try this. Boom. 
[00:30:17] Gabrielle: Because there were a couple things that we were thinking about doing during my oldest's winter break. Yeah. And then we went, but do we really want to spend the money booking a hotel and doing this when we don't know if he'll be an episode. So a lot of things that we want to plan for, it's a little more, we have to play it by ear. There's an amusement park we try to go to every summer, so we're probably just gonna try to find a day where it doesn't seem like he's in episode. Just go so that we can try to get it in. So a [00:31:00] lot of it is just trying to fit his life in where we can, which is heartbreaking for us to watch. 'Cause like Paul was saying, when he wakes up, sometimes he's a little confused. The other day he goes, what day is it? He's is it still Saturday? I was like, it's, and he was like, okay. So his timeline gets very jumbled because he sleeps for so long. So I think today he was very happy because he got to do some stuff that we weren't sure. We weren't sure if he was gonna get to go have lunch out with his nana. So it's been nice that he had been awake for the majority of today. 
[00:31:48] Kerly: So when he's not in episode. Is he like the old jet?
[00:31:53] Gabrielle: Oh yeah. You would have absolutely no idea when he's not in episode.
[00:31:59] Gabrielle: Wow. He [00:32:00] is his quirky, silly little self, bebopping all over the place. Yep. We said to someone because they'll look and they'll be like. He's, he seems fine. We're like yeah, he totally does. But we're not gonna invite all over to see look, you can be having a rave in our living room. And he's not gonna wake up and we're not gonna do that to him. 
[00:32:24] Paul: He'll be in an episode, but when he does wake up and he's finally awake . He's right back to his normal self. And he's bouncing off the wall. He typical 10-year-old, bouncing off the walls. He's creating Lego creations. He's doing all kinds of stuff that a normal 10-year-old would do. And then two hours later he's sound asleep. 
[00:32:45] Gabrielle: Yep. 
[00:32:45] Paul: And so that's the only difference is he'll be asleep. He'll be a little groggy when he first wakes up.
[00:32:52] Gabrielle: Even if it's only for a few hours, he's back to himself.
[00:32:56] Gabrielle: He's gonna actually go see if is still [00:33:00] awake. His older sister is up for her spring break 
[00:33:02] Kerly: oh, I was just about to ask you, do you have any other kids?
[00:33:05] Gabrielle: I do, yes. From a previous marriage. I have a older daughter. Paul has a couple of children from a previous marriage. So this has all been Paul's older son has been over when Jet's in the middle of an episode because they'll make plans to watch wrestling. That's the something the three of them love to do. What was the wrestling that happened a little while ago that jet slept through while Tyler was here?
[00:33:33] Paul: Was it Royal Rumble? 
[00:33:34] Gabrielle: I don't know. It was only a few weeks ago, but I think it was very bizarre for, Tyler's seen his younger brother, how he is, how you know, silly and off the wall he is. So to have him see his younger brother just completely asleep the whole time. I think he was like, oh wow.
[00:33:54] Paul: , He's not tired, but he's underneath the blanket. She's laying there on the couch. So that's his daughter. He [00:34:00] curled up on her. I'm like, I'm not tired. Like she's okay. Like he'll probably be asleep by the time we back out. Yeah.
[00:34:09] Kerly: Now it's a thing with hypersomnia illnesses where you want to have control over your body when you don't have control. Yeah. I have five sleeping disorders. Narcolepsy is one of them. And Sakhara also . We have the same type of narcolepsy. The one with cataplexy. And a lots of times our parents will like, or our siblings will say to us, okay, go lie down. Go lie down. And we'll be like, no, I'm fine. I'm fine. 
[00:34:32] Gabrielle: Yeah. 
[00:34:33] Kerly: And a lot of the time if other people are observant, they can see it. Before you feel it.
[00:34:39] Gabrielle: I can see it with him some days and I just am like, Nope, just shush. Just let him make sure he's in a safe spot. His last episode, usually Paul would carry him back in, into his bedroom. But then one night he was like, if I fall asleep, can I just stay on the couch? We're like, sure. Is there a reason? He was [00:35:00] like, when I fall asleep, I feel safer where I fell asleep. So if he fell asleep in his bedroom, he would be fine. I can't really blame him, he doesn't wanna be moved. Cause I think it gives him a little bit of normalcy where, okay, I'm, I woke, I'm waking up in the same room where I fell asleep. 
[00:35:19] Kerly: So waking up somewhere else. 
[00:35:22] Gabrielle: Yeah. Even though he's familiar with his room. 
[00:35:26] Paul: And it just, and we try to do what we can o obviously, to make sure he's comfortable and he's this, he's that.
[00:35:36] Paul: There's always a bottle of water next to him. He drinks a lot of water. So we always make sure there's a bottle of water, whether it's his bed or on the coffee table, in the living room, if he falls asleep on the couch. So when he wakes up, he drinks. We always trying to make sure he's hydrating. Making sure when he first comes out, he really wants nothing to do with anything.
[00:35:57] Paul: No 
[00:35:57] Gabrielle: he's gotta give him a few. He likes that, he [00:36:00] probably needs a solid 20 ish minutes. Yeah. So I'm trying to get better. 'cause I know, and I told him one day, I said, I'm sure if I was in your position, I would be getting just as annoyed. I'm not, I don't, 'cause I told him, I was like, I don't want you to feel badly that I mentioned that you were irritable with me or that you snapped at me.
[00:36:21] Gabrielle: I'm not saying it as a criticism at all. I'm just, I have to ask these things. Especially, I've been trying to really document so that when we do get to see the sleep specialist in July, that. I will have as many answers as they ask. If they say how many episodes did he have in March? He had three episodes in March.
[00:36:43] Gabrielle: March is not a long month. So he basically lost almost all of March. I think one of the things I remember reading was what they call, they're like, one of the best things for KLS patients is to have a solid support system. Yep. [00:37:00] Because, some say you can grow out of it. I don't know that you ever truly grow out of it. I think that the episodes may. Become more infrequent, but I don't, 
[00:37:13] Paul: yeah, 
[00:37:13] Gabrielle: I don't feel that you can just grow out of it. We always used to joke that he was gonna be living with us forever, so we just are like now we just, yeah. With us forever, we're just going 
[00:37:25] Paul: with that.
[00:37:26] Gabrielle: But, they called it watchful waiting. 
[00:37:30]  : Yeah.
[00:37:30] Gabrielle: We haven't noticed any triggers. Like we don't, we haven't noticed anything like, oh, that happened the last two episodes. Oh. So maybe this will trigger there doesn't seem to be anything that triggers it. 
[00:37:45] Paul: And we were just talking to him about it just the other night about asking him the questions of, have you been feeling anxious? Lately are you feeling stressed out about something? And it's all those little things, but, and like to go back [00:38:00] to what you were talking about before, which yet is he's involved in every detail of everything that's going on. And he knows about kLS, what KLS is, what KLS does. He knows all these different things because obviously it's happening to him. And I wish that we had more answers., Like anybody would wish when you get into the all the sleep disorders, like narcolepsy and things like that, and we wish we had more answers. We wish we had this, we wish we had that. And hopefully from like the podcast and people speaking to other people, maybe we could generate some big traction. And really dive into it because it would be amazing. We could actually find some answers on a lot of it, that's a big thing for me. Yeah. 
[00:38:55] Gabrielle: I think just having to watch him learn how to cope, [00:39:00] he had been doing a youth bowling league and he did the fall and winter session and I said, Hey, do you want to do the spring session? He had missed the last two weeks of the winter session. And he said, no. I said, do you wanna share ? Is there a particular reason? He's he's can be very time oriented. If I say I'm gonna do this at three o'clock, I best be doing that at three o'clock. So I think it was really hard for him to have missed that because it was something completely out of his control. And he was like, I'm not saying I'm never gonna do it again. He's but for right now, I said, I am gonna respect that. I have always respected. I'm not gonna push you into sports that you don't like. He tried, a couple told me they weren't for him. Okay, cool. I'm not gonna make you do that. No offense, you're not gonna be the next, baseball star. I love you to death, but you're not going to be coming. So if you're not wanting [00:40:00] to go and try that, I'm not gonna make you. So I think sometimes the lack of control is really challenging for him when it comes to time because he likes, if he knows we're going somewhere at a certain time, then that's when we're going. So I think that's been very challenging for him. 
[00:40:19] Kerly: Definitely . We've interviewed one person with KLS on the podcast and she hasn't had episodes for about 10 years now, but she used to say that alcohol used to trigger hers. 
[00:40:30] Gabrielle: Yes, I listened to that one. Yep. I had listened to that which I think makes a lot of sense when you think about it. Cause it's alcohol's messing with your body and your chemistry. So I could totally see where that would trigger an episode. 
Understanding Jet's Episodes
[00:40:48] Gabrielle: Yeah. 
[00:40:49] Kerly: I'm glad you spoke about his irritability 'cause I was gonna ask you Yeah. That but you said that once he's out the episode, he's back to his ju self, yep. It's only when he's in the episodes that [00:41:00] he has like a personality change. Yes. 
[00:41:02] Gabrielle: Yeah. And it's not. I if you didn't know him, you wouldn't really think anything of it. You'd be like, oh, it's a 10-year-old getting annoyed with his mom. Yes. But for us, we know that's not how he is. Yeah. He also, another thing is light and sounds, he gets very hypersensitive to. So in our living room, across from the couch is a window and I usually open it up for the plants and there will be, if he's in episode and he comes into the living room, he'll sometimes complain about the light and I'll either offer to close it or he'll just put the blanket over him. 'cause he says it's just too much. So those are the other things that we notice a lot when he's in episode is the sound and the light.
[00:41:52] Kerly: Sakhara.
[00:41:52] Sakhara: Okay. 
Impact on Family Dynamics
[00:41:58] Sakhara: So how has KLS changed your Relationship or the family [00:42:00] dynamic?
[00:42:00] Gabrielle: Why are you laughing? I think it has definitely brought the three of us that are in the household full time. I think it has brought us closer than I could have ever really imagined because we try really hard to work as a team.
[00:42:17] Paul: Yep. 
[00:42:17] Gabrielle: And there have been times, the weather's starting to get nice, so it's finally getting to shake off and be like, oh my gosh, we can stop going stir crazy. But then, we were getting ready, we're gonna, go do a couple things after. But now Paul will probably stay home with Jet if he's asleep because we can't take him out.
[00:42:39] Paul: It takes a lot of patience.. Like I said, I work early in the morning, so I get up around one o'clock every morning for work. So I come home and I don't sleep very good. That's it. I can't shut my brain down, so it works out 'cause then, she's still here and and it's just us communicating with each other.
[00:42:58] Paul: Like if I'm at work and he [00:43:00] wakes up and then falls asleep, she'll text me with the times. If I'm home, it's us as a partnership working together. And I think we actually laugh more now than we ever have, 
[00:43:15] Gabrielle: probably. 
[00:43:16] Paul: And our house has always been filled with laughter, jet has got his own little personality now that's coming out and his little one-liner jokes that he likes to fire off at you.
[00:43:27] Paul: And I do, I think we laugh a little bit more now and it could be because it's a stressful time and and whatever,
[00:43:35] Gabrielle: I think sometimes, yeah, I think sometimes for us we've always I've always had a little bit of a dark sense of humor, so I think sometimes that's definitely like a coping mechanism for me. But like Paul was saying, I went to work super early 'cause he normally has Sunday, Mondays off, so I go in really early in the morning and I'm usually out, pretty decent time. I saw that jet was still awake. And I said, Hey, if he falls back asleep, just message me so I can [00:44:00] note it in my little notebook that I keep on my phone. 
Coping Mechanisms and Communication
[00:44:03] Gabrielle: And just that way, the communication, I think is the biggest thing is I'm not sure that I ever thought that I would have that much. We just try to work as a team, not saying I never thought I'd be like in a situation where it had to be. I'm just thankful that this didn't tear us apart like it potentially could have.
[00:44:26] Paul: And something that may sound trivial or anything like that is if you're home and he is asleep. Do the dishes. Yeah. And I know it may sound trivial, but I'll come home from work and the sink will be, there'll be no dishes in the sink or the dishwasher will be run and you're like, oh, I don't have to do that. Or she'll come home from work and I've done the dishes and she can come in and be like, oh, I don't have it. It takes one more thing off the plate, so whether no matter what it is, but [00:45:00] for us it's the small stuff, doing the dishes not asking the other one what they want to do for dinner. We really don't like doing that in our household, but we still do it. But, having an idea or something that kind of takes the pressure off of each one it actually does help, especially when he is in an episode, because , it's not like we can all go to a restaurant together or something. So it's, a little bit, where you're sitting here and you're like, okay, let me get the dishes done. Let me walk, let me sweep the floors. Let me, do this. 
[00:45:30] Gabrielle: Because I think a lot of time is when he's awake. Sometimes we'll just try to pack stuff in. 
Yep.
[00:45:36] Gabrielle: Like we've already made, like just a few things that we'd like to try to do this summer to just, it's gonna be one of those things, okay, he's awake, let's go. Just let's do it. So yeah, let's have the dishes and the laundry done so that we don't have to worry about it, and we can just go and have fun and let him enjoy some life, because he's missed half the year already, 
[00:45:58] Kerly: [00:46:00] yeah I had a question and then it just literally went straight out my head. Sakhara. Oh, it came back. 
Challenges of Finding Support
[00:46:08] Kerly: Now, has Jet met any other kids?
[00:46:10] Gabrielle: No he hasn't. I don't know. He really hasn't met anyone. I have someone I went to high school with that found out a few years ago that she has narcolepsy. So I've been following her story a little bit and like how she's dealt with it and, i'm very curious to see what comes from the appointment in July, because that was one of the things, I talked to him a few weeks ago. I said, if you ever feel like you. Need to talk to someone other than me or your dad, like just about how you're feeling. Because this is a lot for you to be going through. I'm like let us know., We're very open about our own mental health. That therapy, talking to someone, reaching out for help, they're [00:47:00] not bad. It's like very healthy. So I told him, I was like, you don't have to, but if you want to. And unfortunately it just doesn't seem like there are that many resources for us to find anybody that he could talk to that can, associate and be like, oh yeah, this is what I go through when I'm going through an episode.
[00:47:23] Gabrielle: So that's the most challenging thing is that there's so few. Kids. That I feel like he's doesn't have, other than us, I don't feel like he has much of a support system.
[00:47:37] Kerly: Yeah. 
[00:47:38] Sakhara: So we spoke about family and you guys told us a few things that you do to work as a team when ever Jet is going through an episode. Is there anything that you guys do as a family to cope with what may seem like hard times?
Emotional Struggles and Family Bonding
[00:47:53] Gabrielle: I feel as a family we deal with it. Okay. But sometimes I know me personally, [00:48:00] I will get very sad, not every episode, but probably his second one in March. I was very emotional because. You wanna try to fix your kid, and I can't, there's nothing I can do. So I was getting very emotional and that was heightening a lot of my anxiety and just me feeling like mopey I can't do anything. All I can do is sit and watch him. So I think as a family we deal well with it. I don't know that I always deal great with it on my own, but I'm trying to make sure that I vocalize it to Paul so that he has an idea of if I'm, he's pretty good at, he knows when I'm struggling with it. Like he's, we've been together a while, so like he knows. So I think sometimes I feel like I have a hard time. 
[00:48:58] Paul: My hardest time is 90% [00:49:00] of his episodes are he's awake when I'm either at work. Or when I'm asleep. Oh. So I'll get up in the morning and I'll go to work and she will message me and say, oh, he's up. And I get really excited 'cause I'm like, Ooh, I'm gonna be outta work at this time, and I get a message saying, oh, he went back to sleep now. 
[00:49:24] Gabrielle: Yeah. 
[00:49:24] Paul: And then if she has to work, I come home, she'll go to work, and then I just sit here in the house and he's just asleep, not doing nothing, but then I'm going to bed when he's getting up.
[00:49:36] Gabrielle: Yeah. 
[00:49:36] Paul: So it makes it I get really bummed out with that fact of, man, 
[00:49:44] Gabrielle: you don't really get to see him. 
[00:49:45] Paul: And then today me and him were obviously both awake at two o'clock in the morning, even though 
[00:49:50] Gabrielle: it was crazy early in the morning. 
[00:49:52] Paul: She went to work and me and him. Split screen monster trucks on the PlayStation and it [00:50:00] was just me and him playing video games watched some more wrestling.
[00:50:04] Paul: We, we just kinda hung out, just me and him and laughed and joked and, so then I do get those moments. But it is when, usually when he is in an episode, I miss a lot of it. And it really, bums me out. But also knowing that he's gonna come out of his episode and we're gonna go have a whole bunch of fun no matter what, 
Future Concerns and Independence
[00:50:28] Gabrielle: and I think a lot of it is just, the way I view it right now is we have to fit it in when we can and to not, I think that's why we haven't planned for a lot of larger things. So that. We're not disappointed if we're not able to do it. Because that's the other thing. I don't want him to feel guilty. He talks about that a lot, which I think is pretty heavy for a 10-year-old. Like when he talks about, one morning he had woken up, [00:51:00] he made himself some mac and cheese. He was even gonna queue up his laptop to do his schoolwork. 'cause it was, I think maybe three or four o'clock in the morning and he didn't wanna wake me up. And when I did wake up, I was like, why didn't you? He's I don't wanna, he's I know you have to work later. I don't wanna wake you up. And I was like, that's very sweet of you. I was like, but it's okay. I was like, you are valid feeling that way. I try very hard to make sure that I never. Negate his feelings. You're completely valid. Feeling guilty that you don't wanna wake me up. 'cause I have to work and I understand that, but it's okay.
[00:51:41] Sakhara: I am so glad you said that because Jets feelings are valid and he should not feel guilty about waking you up. I also know that it can be hard as a parent to look at your [00:52:00] child and realize they're going through something and you can't help. I'm not a parent myself, but I would imagine if my child had. KLS or narcolepsy, how much of a difficult time I would have trying not to shelter them from experiencing the episode . There's been times when I would go through episodes and my mom would say, are you okay? Do you need some water? Do you need to sit down? It goes back to what kerly said earlier. A lot of times people will see you struggling through the episode, or we'll see the episode without happening before you do. So it's like they want to intervene, they wanna help, but. You also want the person who has the disorder to be independent and to be able to navigate the symptoms on their own.
[00:52:45] Gabrielle: And I think that's something that's gonna be interesting, I guess is the only way I can put it. Interesting to watch, like as he goes what will purity bring for him and KLS? Like [00:53:00] how could that change the dynamic of all of it? Because, I want him to be able to feel independent. I want him to be able to feel like he can do certain things. We've talked, he's only 10, but we're like, there are ways that if you wanna try to have a job, then okay, there are gonna be certain things that they may be more understanding. About when you go into this isn't, you're not just not showing up because you're lazy or you don't want to. That was one of the biggest things is to try to find a supportive work environment, a supportive family structure, like friends, to just understand that you are gonna need support. But , I try to let him do stuff on his own. Like the first time he asked me to learn how to reheat his macaroni and cheese, I got nerdly [00:54:00] excited. He's tell me exactly how you do it. So I told him the times and everything, and just even that little snippet of independence seemed to just. Change stuff a little bit for him. 'cause he said, he's this way if I wake up at three o'clock in the morning and I'm hungry, I can go warm it up instead of waking you. And I said, that's perfect. Yep. Then you can do that. And when I, when my alarm goes off, I will come out. That kind of thing. So even just that little snippet of independence seems like it's made him feel better. 
[00:54:42] Kerly: Yeah. I understand how that would.
[00:54:46] Paul: And when it comes to a job. The other thing that we discussed was, obviously he's 10 now, so it's way on the back burner. But starting even a small business when he gets up to 15 years old, mowing some lawns that I can go with [00:55:00] him and help him out and he can continually do it. Until he finds something. So that way he does have that independence. And if he does go into an episode, if it's small enough of a thing that I can go out and take care of it for him. And he won't have to worry about it until we see what's going on. And it's all those little things, he'll have independence, but we're there in the background, ready to help him and, we have friends one of his good friends.
[00:55:31] Gabrielle: For his birthday there's this company that they specialize in stuffed animals for rare disorders. 
[00:55:38] Paul: Yep. 
[00:55:39] Gabrielle: And they didn't have one for KLS, so they got him this bunny. And it's actually the narcolepsy bunny. 
[00:55:46] Kerly: Oh. And 
[00:55:47] Gabrielle: it's the cutest thing's ever. Cause her children have a lot of health stuff. Yeah. Theirs is much different than jets. Theirs is much more like physical stuff. So it is [00:56:00] nice to have some friends that understand on some level. Yep. When we started going through this whole journey, she had messaged me and she was like, you need to make sure that you. Also are taking care of yourself. Yep. She goes, you guys can't let your tank get empty. Because then you can't help him. Yep. And we're like, Nope. I was like, I'm already on it. I'm already getting ready to talk to my therapist and my other doctor and be like, okay. Instead of like only meeting every six months, let's, there was a time I was talking to a couple of my doctors every three months to just make sure that I was staying on top of what I needed to because if I'm not doing well, then I can't help support him.
[00:56:44] Kerly: Yes. Have you, 
Support Networks and Community
[00:56:45] Kerly: Have you met any other parents that have KLS? No, 
[00:56:50] Paul: it's so rare. Like the sad part is that it's such a rare disorder that we don't even know if anybody else in the state of Maine right now is [00:57:00] diagnosed with KLS. And I would love to be able to, meet with parents or, try to come up with an idea to zoom with parents like this, like to and and actually have discussions with them and where he's so young.
[00:57:16] Paul: I'd love to talk to parents that their kids are 13, 14, 15, and get an idea of 
[00:57:24] Gabrielle: if they notice changes. Changes. Because I think that's the thing that's definitely taking up a good lot rent in my brain on what's gonna happen when he goes through puberty. Yeah, because your stuff changes all sorts. All. So how will that affect. His brain chemistry, is it gonna make things more challenging? Is it gonna stay the same Because maybe it will, maybe it'll stay exactly the same. I certainly hope his episodes don't get more frequent or much longer. I [00:58:00] think his longest was 16 days.
[00:58:04] Gabrielle: 16 days. 16 days was his longest episode. 16 days. Once it hit that two week mark was when I was like, it was 
[00:58:11]  : stressful. Like it was stressful. Alright. 
[00:58:14] Gabrielle: Yeah. This is just our new norm and we can, there's no point in fighting it because there's not much. And I think I found you through one of the KLS support groups. Yes. 'cause I remember seeing you say something about. Talking to, caregivers and I was like, I would more, I want more people to know about it because I didn't, I had no idea until I put that one Google phrase in that I had no idea that it was a thing.
Raising Awareness and Educating Others
[00:58:46] Paul: The one message that, you know, out of everything for me would be, other people that are listening and things like that, that listen to this and get it. And their kids have KLS, let's all reach out to each other, help each other be [00:59:00] there for each other. I don't care if you're in Japan. I don't care if you're in the uk. Don't care if you're in Germany. I don't care if you're my next door neighbor. There's so few of us out there that we need to be there for each other. We all need to be there for each other. And. It would be so awesome to be able to talk to other parents and see what they've gone through that have been doing it, that have had their child with episodes for many years compared to us. And then, 'cause there's support groups for a lot of stuff and we don't really, we don't really have that for KLS and it would be nice because, like we were just saying, the whole not knowing what's gonna happen in three to four years. Is it gonna get a little worse? Is his attitude gonna come a little bit more? Is it gonna stay the same? But knowing what those parents go through, because when you go into a group on Facebook or whatever, 
[00:59:57] Gabrielle: it's hard to weed through sometimes. Yeah. It's [01:00:00] hard to go through. It's sometimes what I have a, challenging time because you have to be careful when it comes to social media because you don't know if someone's being authentic. Are you really going through this? 'cause I don't wanna believe that you're making this up by any means, but unfortunately you might be.
[01:00:20] Paul: And they might think it's a sleep disorder, all the sleep disorders and neurological sleep disorders that are out there are all just as bad as anything else in this universe and I don't think people underst, they're like, oh, you fall asleep. It doesn't matter what sleep disorder it is. Or, neurological sleep disorder. Oh, you fall asleep. Oh, big deal. They don't understand the impact on someone's life or , their loved ones around them. And it is such a big impact and. This is why it's so awesome to be doing something like this or, meeting other people. Because we cannot actually support ourselves 'cause we know as caregivers or, maybe the kids get together [01:01:00] or anything like that. People that have KLS and they talk to each other and we can support ourselves. And, put that message out.
[01:01:07] Gabrielle: I haven't looked into it too much, but I do believe that there is a KLS conference. I don't know when it happens. And that's another thing we've. Made sure that Jet's involved in all of the decisions.
[01:01:23] Kerly: I love that part of the parenting strategy.
[01:01:25] Gabrielle: He's a little, I don't wanna not resist, hesitant maybe about this appointment that's coming up in July. And he's I don't wanna go through a bunch of tests. We're like we don't think you're going to, it's not gonna be the same, it's not gonna be a bunch of blood draws. We're like, we don't know. There may be, you may have to do a sleep study where they're gonna put. Stickers on your head. And I don't know how they would go about doing that. I would think that it would have to be like a, do we wait until he's in episode and then get him to you guys? That's the one thing that will be one of my big questions is if you do wanna do a [01:02:00] sleep study, are you going to do one when he's out of episode and then one when he's in, because I feel like you would need to compare that data. That's the way my thinking is. But in this family, I've always been very, my body, my choice. If you don't wanna take a medication I'm not gonna force it on you. And, but the same thing, if I don't wanna take a medication, I don't want you forcing it on me. So we just have always tried to have a very, open dialogue about all of our health. Paul has a lot of health stuff. So we've always been. Very open in this family about it, but age appropriately. There's some stuff that, he's seen, but it wasn't worth getting into it on a deeper level because at that time that was all he didn't need to know some of the big, more intense stuff. So we've always tried to [01:03:00] be, I don't like to sugar coat and rainbow. Not everything is rainbow and sunshine. It just isn't. And for us, we're just trying to go about it in the most positive way that we can. But also have that realistic expectation like. The hardest thing lately is when he'll just look and be like, I hate KLS. We know better. We know we do too. Like we get it. We feel you kid Yep. We understand.
[01:04:00] 
 
 
[01:04:12] Kerly: Sakhara, you have one last question. 
Final Thoughts and Reflections
[01:04:16] Sakhara: If there was one thing that you could change about how society handles rare disorders, like KLS, what would it be? 
[01:04:26] Gabrielle: I think for me that people would be a little more understanding and to not just, like Paul was saying, not just be like, oh, you fall asleep. No big deal. To him it is. So I wish that there was like a little more like maybe empathy, that this is rare and it is real, so don't just try to make it that it's no big deal. That's the way I've looked [01:05:00] at it. We have a friend who's. Daughter has a very rare allergy. So she reaches out to me a lot. She'll be like, oh my gosh, I just read this and like rattles off stuff.
[01:05:11] Gabrielle: And I'm like, yep, there's a doctor in Stanford. And I said, I did reach out to that doctor and they're not currently doing anything with KLS. So I am there when they wanna contact me. But I think just a little more empathy for people that have a rare disorder. 'cause you already feel a little bit like an odd duck to begin with.
[01:05:34] Gabrielle: And then for people to just be like, it's no big deal. Don't worry about it. I feel like that's probably very 
[01:05:40] Paul: I, I would say, 'cause we've had this said to us a lot don't try. If you don't understand something, don't try to say, go outside and get some sunshine. Oh, because it'll make you feel better.
[01:05:56] Paul: Or we get that one a lot. We get that a lot. And I'm [01:06:00] like, yep. We can't wake him up. 
[01:06:01] Gabrielle: What if you just get him up and out first thing in the morning? And I, if I could have reached through my phone, 
[01:06:09] Paul: let us I've said it on a lot of posts that I've made about KLS is, thank you for your concern and, thank you for your wonderful advice, but let us help educate you so you understand what we go through.
[01:06:23] Paul: I talk to my mom and dad and they live in Colorado, and they were on a visit here to Maine visiting us this past summer. Jet wasn't in an episode, 
[01:06:33] Gabrielle: which was so awesome, 
[01:06:35] Paul: which it was amazing because we hadn't seen my mom and dad in a few years. So it was amazing. But. So they didn't get to see him in an episode.
[01:06:43] Paul: And so my mom asking me a ton of questions, and every time I call my mom, she asks me the same questions over and over again. I'm like, mom, literally it hasn't changed. But when it does, like she said the same thing the last time we were talking. She goes, yeah, she [01:07:00] goes, you like educated us on it.
[01:07:03] Paul: And now we know, and when we say, when we're talking to people about our grandson and we say is KLS they know what KLS is and can explain to them because one of the most common things that just get 'em outside, get him in some fresh air. I, we'd love 
[01:07:17]  : to 
[01:07:17] Paul: I'll drag him outside because they're, he's sound asleep.
[01:07:20] Paul: I can lay him in 
[01:07:21] Gabrielle: the backyard. But, 
[01:07:22] Paul: instead of just like throwing nonsensical advice at people that as like the caregivers or the one who's going through it, no matter what it is. No matter what disorder, no matter what neural neurological sleep disorder or sleep disorder, anybody has, don't throw stuff at people and be like, Hey, be like, Hey, so what do you go through and would, and ask the question, would this help you?
[01:07:45] Paul: Do 
[01:07:45] Gabrielle: you think it would help? Not, why don't you, 
[01:07:47] Paul: instead of just throwing it, and to go on that point, you both have narcolepsy. It would be like someone it, I know no one's probably ever said this to you too. Hopefully not. [01:08:00] Oh, if they did, I swear they'd be like, oh, you feel tired. Drive down the road and put your head out the car window to get the cool breeze on your face.
[01:08:08] Paul: It'll keep you awake. It's like they don't understand. And education is my big. Rather educate people so they understand it. 
[01:08:17] Gabrielle: That's my biggest thing right now is like bringing more awareness. 
[01:08:21] Paul: Yeah. To 
[01:08:22]  : stop. Like awareness is, 
[01:08:23] Gabrielle: for so long and I'll fully admit for so long, when I thought of narcolepsy, you know you have those stereotypes.
[01:08:30]  : Yep. 
[01:08:30] Gabrielle: And that's the lens you see it through. So until a few years ago when someone I went to high school with kind of started taking us on her journey via Facebook, like it completely I was like, oh my gosh, I was so ignorant when it came to it. So I was thankful that she was willing to share it with people because I wouldn't have known and because nobody [01:09:00] around me was affected, I probably wouldn't have educated myself because it wasn't prevalent.
[01:09:07] Gabrielle: So it's. I am like starting to get very I want more awareness of some of that. And we do 
[01:09:15] Paul: a lot with our social media. Obviously social media. Social media. That's the biggest thing. 
[01:09:20] Gabrielle: And some people I think have criticized Oh yeah, a little bit because they're like why do you post so much again?
[01:09:27] Gabrielle: I don't care. I have asked Jet. I said, are you okay if I bring people on this journey with us? And he said, yep. I said, okay. I said, but if it ever be, if you are ever feeling like you don't want that anymore if you don't want me to post, like the other day, yesterday when I made him mac and cheese at six o'clock in the morning, I took a picture of him, like on the couch eating, like smiling. I was like, do you mind if I post it? He said, yes. I said, okay, [01:10:00] but remember, it is your life. Be sure if. You start to feel it's getting to be too much. Say, Hey mom, please don't. And he is, he's okay. He's I'm, he's pretty. I think he wants, and I can't speak for him, obviously, but I think he also wants people to be educated about it and to understand it.
[01:10:24] Sakhara: Yeah. There, there's not that much. I'm just now learning, I didn't even know about KLS before .
[01:10:32] Kerly: I was gonna say I have someone that I would like to connect to you with.
[01:10:38] Paul: Oh my goodness. We would, yeah. That would be amazing. 
[01:10:42] Kerly: The last question is the red button question, but I think I already know the answer to this, but we'll ask it anyway. Yep. If there was a red button and you could press it and get rid of careless for a jet, would you press it and why? 
[01:10:56] Gabrielle: I don't, I'm not sure a hundred [01:11:00] percent that I would, and I know that may sound weird.
[01:11:04] Gabrielle: I would love for him to just have a normal life, but at the same time, the whole, bringing more awareness to us as a family and to realize that there are a lot of things that people are going through. I think has like really opened up my own awareness. So there's a part of me where I completely, if I could, I would try to hit that button and have it not affect him. But at the same time, I love that we are being able to grow as a family and bring more awareness. And I am thankful every day that it wasn't something worse. 'cause it could have been, we started getting, our brains were going, oh my gosh, what if he has a tumor? What if there is something pushing on his brain that's [01:12:00] making this happen? So we are thankful, if I will take KLS over. So many other things. 
[01:12:09] Kerly: So I was wrong about your answer. Yeah. It turned out to be different. 
[01:12:15] Gabrielle: It's definitely Yeah. Falls back in the room. I don't know what his answer would be. So if we could hit a red button to make it so that jet didn't have KLS Yep. Would you hit it? 
[01:12:30] Paul: Yes. I would hit it if it meant I was gonna be in a wheelchair for the rest of my life, I would hit that button so that he could, as a, wow. I've had a really good life in a way. I've lived the lives of probably 20 people, probably in the things that I've done. I was a professional musician. I fly hot air balloons. I've done anything and everything I've ever wanted to do in [01:13:00] my life, and I want him to be able to do the same exact thing of do anything and everything that he wants to do in his life. I would totally hit that button in a heartbeat. It would be it. 
[01:13:17] Gabrielle: My answer is little, a nanosecond a little different.
[01:13:19] Paul: Really.
[01:13:22] Kerly: I love it. That's why you have love for the life. I love it.
[01:13:25] Gabrielle: I said that there's a part of me where I absolutely would hit that button. I totally would, but. The awareness that we've been able to bring and yeah. How we've grown as a family. Yes. There's a part of me where I think it's beneficial to others, but at the same time, I would love to hit that button so he can actually have like a childhood.
[01:13:48] Paul: Yeah, she's the critical thinker of the group. I'm very like, just 
[01:13:51] Gabrielle: do it. I'm sure Jet would, because I think he gets very discouraged with how much he misses. 
[01:13:57] Paul: But we do, like we said [01:14:00] earlier, we said it a few times. We when he's out of an episode, we live life. We will do things. A lot of people, don't have the opportunity. We are fortunate that a quarter mile away, we have probably the best ice cream stand in the state of Maine and they know us there and we will go constantly to the ice cream stand. He likes his cookies and cream milkshakes and his cookies and cream ice cream from there. So it's not always going to the big amusement park or doing those things. It's all the little stuff.
[01:14:37] Gabrielle: A couple weeks ago there's an indoor arcade that has like amazing slides and he wasn't an episode I was like, let's go. Yeah. Let's just go and let him run around and just get out of the house. Even if it's something that small, yeah. That's what we try to do. Just to, and that's another benefit to [01:15:00] homeschooling him, is that, okay, we wanna go on a field trip and if we can, we will gear it towards, we're fortunate that we have a certified teacher that does our review, that she views homeschooling as, yes, you have to try to meet what the state of Maine is telling you, you have to meet by law. But at the same time, she's you learn every day. He wanted to learn a few days ago how to make mac and cheese. So he sat there and I showed him. You put the water, you boil it all the directions. She's I view that as learning. You've taught him how to read the measurements on the stick of butter. So we are fortunate that, yeah. 
[01:15:44] Kerly: That was actually home tech and science. Yeah. and some math.
[01:15:49] Gabrielle: So there's days where it's oh my gosh, he's out of episode. It's a beautiful day. Yep. Let's go. We did four different lighthouses. The Lighthouse tour in Maine. Yep. Yep. So we just spent a [01:16:00] day doing that, in the fall, so that, and we were like, oh, it's about Maine, it's historical, it's outside. Yeah. So we are fortunate that we can take great day and those can count as school days for him and 
[01:16:14] Paul: and he is a Lego fanatic and his little mind. His imagination is out of this world. And so he will see something and then he'll just start building something to go along.
[01:16:29] Gabrielle: He'll know that he has a certain block that can make this one thing look like. However he's trying to create it. And I always tell him, I'm like, I wish my brain worked like that. I am very artistic and very creative, but I can make very basic things out of Legos and some of the stuff he creates, I'm just, I'm fascinated with how his brain works.
[01:16:53] Paul: And that's the building and the different things. And it's just awesome. The homeschool piece where we can do all these fun things when he is [01:17:00] out of an episode. And with my work schedule going in so early and getting outta work so early that if we want to do something during the day, we have the ability to go and do it. And, we do give him the best life that you can possibly have where he's rapid cycling through these episodes right now. But also, I want him to have the fullest life he can possibly have. And not last year, the year before I took him on his first hot air balloon ride and it was such an awesome, it was before he had KLS, but since he's had KLS his anxiety has gone up a little bit and he really doesn't like heights. Yeah. So I am so super happy that I was able to take him and he'll always have that memory of going up in the balloon with me and. For his first time and what we saw deer in the [01:18:00] fields and turkeys and as we were coming in so he was able to take that, whether he can ever do it again. We don't know. His heights thing came on after KLS hit. 
[01:18:11] Gabrielle: Yeah. Like he used to not really have problems with the amusement park rides. Yeah. And now he seems a lot more hesitant. 
[01:18:19] Paul: We do, try to give him a really good, when he is out of an episode, we're gonna go full bore and we motivate. So we're looking forward to the weather. Today's super dreary here, but we're just looking forward to the warmer weather in hopes that we can try to pack as much into his summer as possible. 
[01:18:38] Paul: Yep. 
[01:18:40] Kerly: That's great. I wanna thank you Paul and Gabrielle for coming. So much. It was so nice to meet you both.
[01:18:48] Paul: This has been so awesome. 
[01:18:50] Kerly: Yeah, this was amazing. So 
[01:18:51] Paul: thank you. Thank you. 
[01:18:53] Kerly: Yeah. And it was really good to hear it from a parent's perspective, so Yes. We like to end the [01:19:00] podcast by saying happy, napping everyone. 
[01:19:02] Paul: Oh, I love 
[01:19:03] Kerly: that. I like it. 
[01:19:05] Gabrielle: I love it.
[01:19:06] Gabrielle: That is awesome.
[01:19:07] Kerly: So 1, 2, 3 happy napping. Everyone. Everyone. . So there's a lady I recently interviewed, her son. He has narcolepsy. Type one and they live in Canada. Okay. And they don't have a lot of support there for pediatric cases. And her son is 10. Okay. Oh, I would love that. Yeah. If you wanted to pass our information emails, however you wanna do it, Facebook message , are you on WhatsApp? I have not got that one yet. Okay. I was thinking about it though, 'cause another like little side project I have going on, someone kept talking about it, so I was like, oh, maybe I should do that. So I might, but right now I only have my email and Facebook messenger. Okay, that's fine. I'll get in contact with Kathy and also if I can send you her [01:20:00] number. Okay, great. Yeah. And how far is Toronto from Maine? I'm trying to 
[01:20:06] Gabrielle: think because Canada is it's so 
[01:20:10] Kerly: huge. So I wasn't sure whether you were the other 
[01:20:13] Gabrielle: side of it or, I'm trying to think. I think that it's more West.
[01:20:22] Kerly: Yeah. But at least it's not so far away cause She said that when she had to go to faces in the US and they took him there, it changed his life. Like it was the first time he got to see other kids that were Yeah. Sick. That were taking medication that were sleeping all the time. Yeah. And they had to travel from Canada to, to thing two, to have that. And I thought that's so sad that they didn't like, we've got so much work still to do because she shouldn't have to travel all the way To the US to have that available.
[01:20:56] Gabrielle: Yeah. It looks like Toronto is nine hours [01:21:00] from here, which honestly isn't that bad in the grand scheme of things. There are places like from the tip of Maine up to the top, like it would take about that. But that's the thing. And especially for like kiddos, like you already don't really wanna have to be carted around to begin with for your doctor's appointments. So having to, like Paul was saying at the beginning is we were fortunate we didn't even have to leave the state. We were prepared for going to Boston if we needed to. Like we had that mindset of we may not get the answers that we need in Maine. 'cause Maine is hit or miss sometimes with what doctors are available. 
[01:21:43] Kerly: Yeah. Darling, it was so good to be on with you. I need a nap now.
[01:21:48] Gabrielle: Yes, you go rest. And I think Paul said Jed is very close to going to sleep probably for the night,
[01:21:56] Gabrielle: thank you very much. Yes. And 
[01:21:59] Sakhara: it was [01:22:00] lovely meeting you.
[01:22:00] Kerly: You guys have a lovely week and Thank you. You as well. I'm gonna be in touch with Kathy 'cause I'd love for the boys to Okay, great. To connect and stuff. They will. Yeah. No, that would be great. Yeah. And I think that would be good for them. And also good for you to talk. Yeah. Also going through stuff. Although even though they're both under the central disorders of hypersomnia, it is different. I know it's very different for Jack 'cause he's sleeping much longer than than Lucas is sleeping. But the way that the both of you have to navigate and advocate for your kids because their children, that you can really connect on the kids.
[01:22:46] Kerly: Yeah. 
[01:22:47] Gabrielle: And I think it would, even though the boys have a different diagnosis, I think it would potentially be very good for them to just be able to be like, oh my gosh, there's someone else my age. It may not be the [01:23:00] exact same thing.
[01:23:04] Kerly: Understand about being tired and being frustrated because Exactly. Missing out on stuff. Yes. Because even though with narcolepsy you're not sleeping as long, you're still missing out on stuff. Yes. And Lucas is missing out on school. So Yeah. While Jet is being homeschooled. Lucas is going to public school and he's missing out on so much of school. Yeah. Because he's always on. Yep. Yeah. So yeah. I will, I'm gonna do that right now before I go to sleep. 
[01:23:35] Kerly: Okay. 
[01:23:36] Kerly: So I don't forget.
[01:23:37] Gabrielle: All right. Great. Have a good rest of your week. Yeah, you too.
[01:23:42] Gabrielle: Thank you. Bye. 
[01:23:44] Sakhara: Bye.
[01:23:49] Kerly: Narcolepsy Navigators is produced by a team of volunteers working for [01:24:00] the Naps for Life, CIC, which is a nonprofit group dedicated to improving the lives of people with sleep disorders through community Action. You can help grow our podcast and join our sleep disorder support. By visiting the website, www.napsforlife.com.
[01:24:19] Kerly: If you or someone you know has a sleep disorder and would like to share your story on narcolepsy navigators, please email us at narcolepsy navigators@gmail.com. You can also support us by donating at the websites. Happy napping everyone.