S5E1: The Night I Carried My Sleeping Son to the ER

What happens when your teenage son stops closing doors, watches the same movie three times in one day without remembering, and disappears from his own life for weeks at a time? In this episode of Narcolepsy Navigators, hosts Kerly and Ross sit down with Jonathan Lyons — a father from Florida who's spent the last eight years advocating for his son, diagnosed with Kleine-Levin Syndrome (KLS) at just 14 years old.

Jonathan shares the chaotic path to diagnosis, the ER visit that changed everything, the communities that showed up (and the ones that didn't), and what it really means to parent a child who's been robbed of years of his own life. This is a rare, honest look at chronic illness from the caregiver's side of the story.

00:00

Welcome to Season 5 of Narcolepsy Navigators

01:16

Meet Jonathan: father and caregiver to a son with KLS

03:30

"Maybe he shouldn't drive" — the doctor's first advice

06:28

Early signs mistaken for puberty

07:37

Behavioral changes: aggression, hyperphagia, and memory loss

13:54

Realizing this might be medical, not behavioral

18:32

The breaking point: carrying his son to the ER

23:21

Finding the "guardian angel" doctor and the grandmother brigade

31:03

The fog vs. the sleep: which is worse?

38:17

How the synagogue and scouting communities responded differently

45:49

Adult body, teenage mind: the emotional gaps KLS leaves behind

57:11

The grief no one talks about

1:02:51

KLS trajectory research and the changing "texture" of episodes

1:06:49

Advocacy: bringing an attorney to a school meeting

1:09:21

The Red Button Question

Guest Bio 

Jonathan Lyons is a father and caregiver based in Florida whose son was diagnosed with Kleine-Levin Syndrome in 2017 at the age of 14. Over the past eight years, Jonathan has become a fierce advocate for his son — navigating diagnosis, school accommodations, and a healthcare system with almost no answers for a disease this rare. He also keeps a blog documenting the family's journey at klsproject.org.

Transcript

Jon KLS 25_05_25 (1)

[00:00:00] kerly: Hello, welcome to seasons five of Narcolepsy Navigators brought to you by Naps For Life 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 Kleine-Levin syndrome.

[00:00:23] kerly: I'm Kerly Bwoga, the founder of Naps For Life CIC, and welcome to our stories

Welcome and Introductions

[00:00:31] Speaker 7: This week we wanna give a huge shout-out to our newest Patreon member, Ida. Welcome to the Navigator family. We're so glad you're here. Thank you so much for your support

[00:00:49] kerly: Hi everyone. Welcome to Narcolepsy Navigators. I am Kerly your host, and I have narcolepsy, type one. And and I'm here today [00:01:00] with Ross. Hi Ross. 

[00:01:03] ross: Hi, Kerly. 

[00:01:04] kerly: Please introduce yourself. 

[00:01:06] ross: Yeah I'm Ross and I'm, I've got a diagnosis of Idiopathic Hypersomnia. So I'm co-hosting. Thanks. 

[00:01:16] kerly: Today I'm here with Jonathan Lyons and we will be discussing, what's it like to be a parent of someone who has KLS and welcome to his story. Hi Jonathan. How are you? Could you please introduce yourself to the podcast? Tell us your name, the state you're residing in, the name of your child and how long they've had KLS. 

Jonathan and KLS Diagnosis

[00:01:43] jon: Hi I am Jonathan Lyons. I'm a little unusual that I am a father caregiver. I'm in the state of Florida here in the US. My son was diagnosed with Klein Levin syndrome April 24th, 2017.

[00:01:59] jon: [00:02:00] And I remember that date very specifically 'cause it also happens to coincide with my father's birthday. Yeah, he was diagnosed at the University of Florida Shands teaching hospital. And, it was still another six months before we connected with Dr. Bobby Joe Hopkins at Johns Hopkins LK Children's Hospital further south in St.

[00:02:23] jon: Petersburg. And she was the first hypersomnia expert we were finally able to speak with. We got the diagnosis, as I said, at a teaching hospital. They felt fairly confident in the diagnosis. I had suspicions of KLS by that point, so I was comfortable with the diagnosis, but they had never seen a case before, at least not the doctors that we met.

[00:02:49] jon: So it was a continuing journey and for quite some time had been a continuing journey to find information about the disease, to find doctors [00:03:00] who had treated patients and to get any sort of. Input as far as what day-to-day life would be like as a caregiver for a child with this illness. 

[00:03:13] kerly: That's very interesting.

[00:03:16] kerly: All right. So how was your weekend? 

[00:03:19] jon: The weekend is shaping up beautifully. My morning so far has already included a 10 mile bicycle ride 

[00:03:25] kerly: oh, wow. 

[00:03:26] jon: Any day that starts that way is always a good day. 

School Life and Driving

[00:03:30] jon: But yeah, no, we right now my son is coming off of a recent episode, a very unusual experience in the last couple of years.

[00:03:38] jon: Most of his episodes have been very short. This one was extended for a few weeks and interrupted his school year. He is catching up on life. I said diagnosed in 2017 was strongly encouraged by the school to withdraw at the age of 16 which would've been, I guess [00:04:00] 2019. And we then went about seeking a path for him, which included getting a a GED graduation equivalent diploma and transferring to our local community college.

[00:04:17] jon: And he's been attending there ever since. But it's start and stop and we've had a few withdraws for episodes and this. Semester has ended with filing paperwork to drop one course. He was close enough to completing the other courses he was taking that he's been granted an incomplete grade that he'll have to make up next semester.

[00:04:43] jon: In addition to his regular coursework. So that's what that looks like. But when he was first diagnosed, I asked the doctor do you have any advice? We now have a name for this. We know there's no treatment. We know there's no cure. What do [00:05:00] we do? And I got the deer in the headlights stare from the doctor, and in his infinite wisdom he looked at me being a teaching hospital, a young, newly certified doctor I will assume, looked me in the eye and said maybe he shouldn't drive.

[00:05:16] jon: And I'm thinking in my, in the back of my mind. Okay. 14 years old, severe sleep diagnosis. Maybe he shouldn't drive. Yeah. I'll keep that in mind. Thank you.

[00:05:27] kerly: I wouldn't say that was top of your list of things that 

[00:05:30] jon: No, it was not the top of my, top of the list of my concerns at the time. A huge triumph in our lives in the last couple years was that my son did indeed actually learn to drive. He's been driving himself to school for the last couple semesters. And then he got to this semester and looked me in the eye and said dad, I don't feel good enough to drive. I know what my role is here. So right now that includes chauffeur. But it's interesting, as a parent 

[00:05:58] kerly: Can we go back a [00:06:00] bit? Let's go back. 

[00:06:01] jon: Absolutely. 

[00:06:02] kerly: So let's go back to, 

[00:06:04] jon: I did start a blog where I started a memoir of sorts@klsproject.org.

[00:06:11] jon: So that's not quite complete, but it gives a really good view of what it looked like almost up to diagnosis as we saw our son's life fall apart. And hopefully that'll a chance to go back and finish writing that. 

[00:06:27] kerly: Yeah, that would be good. 

Early Signs and Puberty

[00:06:28] kerly: How old was your son when he started having something change? You noticed he was different. 

[00:06:36] jon: Absolutely. So he was just shy of his 12th birthday and, kids go into puberty and you expect there's going to be some behavioral changes that go along with that. With that kids are gonna sleep a little more. He had always been an early riser and things like that, so it didn't set off flags right away.

[00:06:58] jon: It was like having [00:07:00] the frog in the slowly warming pan, things kept getting worse and we weren't putting all the pieces of the puzzle together early on. He was about 13 years old and in our case, approaching bar mitzvah and quite literally up to a couple weeks before his Bar mitzvah.

[00:07:22] jon: The behavioral changes and everything else were so terribly severe. We weren't sure if he was going to go through with that. And we were, riding by the seat of our pants at that point. It was soon afterwards we started seeing a behavioral specialist.

Behavior Changes Explained

[00:07:37] kerly: Can I ask what type of behavioral changes?

[00:07:40] jon: He would get aggressive and rude. He would do destructive things in the house and then claim he hadn't done them.

[00:07:48] jon: There'd be strange things, like we'd find an empty bottle of maple syrup that had been almost full the day before. And this goes along with the hyperphasia [00:08:00] that, that's associated with KLS, where, they'll latch onto something like like sweets and just consume them without being fully cognizant of what's going on.

[00:08:13] jon: So yeah, he would he would slip in and out of coherence, of cognitive ability. And he really would have no memory of these things. And of course, as parents when we finally did get around to the diagnosis and we were looking at this in the rear view mirror, it was like, oh my goodness. We were so upset with him, he was sick and we didn't know it at the time. At the time it looked like he was lying to us. It looked like he was being intentionally destructive and trying to hide it from us. Obviously he would fall asleep everywhere.

[00:08:45] kerly: I'm getting the picture that he, his personality was never like this before.

[00:08:49] kerly: He wasn't that type of child that lie and things like this. Is the reason why you and your wife are like, this is odd behavior, 

[00:08:56] jon: right? No, we are a scouting family scout scouting, [00:09:00] being a great international movement. And of course one of the pillars of scouting is, being trustworthy and honest. It was such a strange change and set of events. And there were other things, he would get very secretive about some of his behaviors. Suddenly he wouldn't want anybody to look at things. , He had been a student who had always scored very well in school. All of a sudden he was not doing his work. He was not making any progress. He wasn't communicating with us. And this just rolled in almost by degrees early on. The first episode was I guess relatively short or at least appeared that way. And he was a voracious reader.

[00:09:44] jon: And so our first. Instinct was, oh, he must have been up reading all night. That's why he's not able to wake up for school. And we were able to casually dismiss what, in retrospect should have been [00:10:00] flashing warning signs over our heads. Oh it's puberty and they're going to have behavioral changes.

[00:10:06] jon: They're going to be more disagreeable. They're gonna be testing limits and, all these things. And I remember speaking to another KLS family and they said, it is interesting that we had taken this position because they said, if you think about it, so many of the KLS symptoms really aren't just symptoms of maturing if you're looking at a child of that age, but its degree, it was so over the top. He would get so aggressive. He would get just, he would get rude. He would get aggressive. My, my wife for a while was actually becoming frightened of him. The other side of this was our son had never been sick.

[00:10:48] jon: I remember an episode going way back when he was in preschool and the entire school had to shut down because strep ran through the entire school. I think there were two people in the entire school [00:11:00] that did not test positive for strep, and he was one of them.

[00:11:04] jon: He occasionally he'd get maybe a fever a 24 hour fever or something, and that would go away and he'd just roll on with it. He'd never really been sick and there was no reason to expect that there was anything going on other than as I said that maybe he'd just been up all night reading.

[00:11:20] jon: It was just very strange. It started with the sleeping and then the behavioral changes started. They were not hand in hand to start with, and then things just started piling up. And like I said, it was like being that, that proverbial frog in the pan, that, the symptoms started coming in a little bit.

[00:11:41] jon: One of the other things. That we stumbled upon when we started reading a description of KLS. And it was like, oh my goodness. This is the same thing was we would occasionally come home and living in Florida, we live with air conditioning. It's just a basic survival [00:12:00] necessity. But we would come home and the thermostat would be set to as cold as you possibly could make the house, which made no sense.

[00:12:11] jon: Especially it would happen like our mild winters. But still, a time when we wouldn't expect, the house to need cooling. We come home and find the house quite cool. Chilly. You'd have to wear a jacket and it's like, what's going on here? One of the things we learned about kls is it pretty much everything associated with that part of the brain, that regulates sleep and everything else also regulates mood. It regulates libido, it regulates body temperature. 

[00:12:41] jon: To this day, he's still, he's always hot and, we now have an agreement. He's aware of the temperature, but he does not feel uncomfortably cool. Our agreement is that if it is below freezing outside, he needs to wear a coat because he wouldn't grab it naturally. [00:13:00] So it, it was just all these very strange things. I found him asleep in the shower one time.

[00:13:04] jon: He would be particularly aggressive if we tried to wake him kicking and hitting and things like that. And, it was. Very distressing. We didn't have a clue, we were seeing a psychologist at the time because of these behavioral changes, and we'd think, oh, hey , we've got something that's working because he would come out of episode while we were trying something and think, oh boy we have a success. Now we've got this thing fixed. And then he'd go back to this really strange behavior again. And so the psychologist was recommending things like maybe a residential program or something to help him straighten himself out . I said I know when I was in university I am just like one credit shy of a minor in psychology. I said, that qualifies me for nothing. But I learned that sleep does really weird things to behavior. 

Seeking Medical Answers

[00:13:54] jon: What if this is sleep related? And he says if you suspect a medical problem, you need to pursue that [00:14:00] first.

[00:14:01] ross: I'm just a bit interested in hearing more about this trajectory from realizing that there was some sort of problem and seeing the behavioral changes. 

[00:14:10] jon: Yeah. 

[00:14:10] ross: And seeing the the increased amount of sleep. And you also getting a sense of there being something that it wasn't that he was being a bad kid or, he wasn't acting up, you were saying that there was something that he needed help with.

[00:14:27] ross: That was, it wasn't necessarily behavioral and I'm wondering, was it this, the cyclical nature of Klein Levin? Because when I think of Klein Levin, the thing that really sticks out to me is that it comes and goes and comes and goes. 

[00:14:41] jon: Right. 

[00:14:42] ross: Was that what was giving you a clue? 

[00:14:45] jon: I would say it's what distracted us at first because every time an episode would end, we would think that whatever intervention we were trying had finally succeeded.

[00:14:55] jon: And denial is a very powerful force. , I [00:15:00] don't know that it is, every parent's first thought that your child who has always been, bulletproof from disease is suddenly has this bizarre disease. They're acting in a strange way because they're acting in a strange way. It. Didn't dawn on us right away. Then, we started, down this path with behavioral the psychologist looking at behavioral aspects. We got a referral to a psychiatrist who tried some different drugs that were supposed to help.

[00:15:29] jon: We thought maybe it was a depression, maybe it was some sort of, bipolar thing, we went through a number of things and before I had this, what should not have been a revelation obviously but what came at the time as a revelation that maybe this is a medical problem and it's not that the behavior is more tied to the sleep than the sleep being another behavioral aspect of [00:16:00] defiance,

[00:16:00] kerly: so did any, anything specific happen? Like after you saw the behavioral therapist and then you were saying to them, oh, I think this might be something else, and he said to you yeah, maybe you should look into something medical then first after that, was it then that you and your wife decided, okay, let's pursue that?

[00:16:21] jon: Absolutely. Absolutely. And something else comes to mind, which is he would be falling asleep everywhere. We'd go out for dinner and he'd just, slump off next to my wife in in a booth somewhere. And, he was just always seemed to be I sleeping and I remember asking. He was small, so he was seeing somebody for a growth hormone and he fell asleep on the exam table. And I said, is this something we need to be worried about? He says , it's probably just a reaction to something else. It's not a big deal. So we had a doctor who [00:17:00] said it wasn't a big deal.

[00:17:01] jon: But when we first saw it, so we were going down this path with this behavioral stuff, and it was about, oh golly not quite two years between the first episode and the diagnosis. Once we started pursuing the diagnosis, that was an issue of months. Trying to find anybody who could do it, because we don't live in a very large city.

[00:17:26] jon: We live where we are in Tallahassee. I'm 20 minutes from the Georgia State line. 

[00:17:31] kerly: Oh yeah. I've been to Tallahassee. I went once when I was in Florida. 

[00:17:35] jon: Wow. Wow. 

[00:17:36] kerly: Yeah, we went to see my cousin, he was staying there for a bit and we drove down from Fort Lauderdale, so it was a very long 

[00:17:45] jon: drove up from Fort Lauderdale.

[00:17:46] kerly: Yeah. It was very long drive, but yeah, beautiful beaches there. Perfect white sand 

[00:17:52] jon: about an hour away. Yes. 

[00:17:53] kerly: Yeah. 

[00:17:54] jon: So we are, but the point is we don't have the big teaching hospitals like Gainesville [00:18:00] has, like Jacksonville has, for us a lot of those big hospitals are really three hour, two and a half, three hours away.

[00:18:07] jon: I am not impressed with the resources we have available to us with certain specialties, and that would include neurology. It was an issue of trying to find somebody who could do this.

Breaking Point ER Visit

[00:18:32] jon: The straw that broke the camel's back was soon after we had discovered KLS. I was trying to get some sleep studies lined up and all the things that one does early in the process to rule everything else out.

[00:18:50] jon: He had a massive meltdown just a huge meltdown. And I said, talked about, the destructive and [00:19:00] aggressive behavior and, he somehow got all ramped up and started destroying everything in his bedroom. It was a very ugly scene and we called a friend over who had a little more experience with mental health. Eventually we all kind of stared at one another thinking well he's already been rejected once for involuntary admission for psychiatric disorder. I have a plan and the plan was to let him shut down.

[00:19:36] jon: Eventually. He's just gonna burn up and go to sleep. And having seen him asleep before like this I knew that he could be moved without waking him. So the plan was for all of us to go to bed, let him fall asleep wherever he might, and we would carry him to the ER the next day. And that's what we did.

[00:19:59] jon: We [00:20:00] kinda left him in his room. There was nothing there that he could harm himself with, and he fell asleep as we, as I suspected, it was a bit of a gamble. But, we thought we knew what we were doing and I threw him over my shoulder, fire in fireman carry style, carried him out to the car, put him in the seat.

[00:20:24] jon: We strapped him in, took him to the er and then asked for help getting him out. It took five staffers to get him outta the car because he wasn't awake, but he was clinging to the car. And so he wasn't coming peacefully and he wasn't awake, but he wasn't helpful. It was a very heroic scene and eventually got him into an exam room and he curled himself into a ball.

[00:20:50] jon: And again, he was asleep. He wasn't wasn't fully aware of what was going on around him. And doctor pulled his scissors out of his [00:21:00] pocket to cut the sheet away that he'd covered himself up in. They designated the room as having a potentially violent patient. And we were waiting in the great irony, waiting on sedation.

[00:21:12] jon: They thought he had to be sedated before they could see him. And before that happened, he woke up. Oh. And he was pleasant and he was courteous and, we knew. I won't say that we knew if my bet was right about the behavior, if he would wake up, be fully awake, we knew he'd be his normal, pleasant, charming self.

[00:21:38] jon: And he was, he's, woke up. He said he was hungry and it's okay, we'll work on that in a little bit. Do you know where you are? And he says he's in the hospital and started going down. Do you know how you got here? No. About that point is when we realized that our very brilliant son has been [00:22:00] acting very well and putting pieces together wherever he would wake up and come out of his episodes and he'd just play along.

[00:22:10] jon: And that's what he'd been doing for some time. See that would've been April sorry, February of 17. And then he would, we would get to Shands and get the diagnosis end of April of 17. So it did not move very quickly, but what happened next after he woke up? The doctor, somebody came in to, I think, get a chest x-ray or something.

[00:22:33] jon: Nurses coming out of every corner. You can't go in there, violent patient. I said no, he's fine now. And they came in and they kinda looked at him and he was sitting up in bed and he was smiling and joking and it was like, this is not the same patient. They called the doctor and you could not have time to this better because it would've been a great, made for TV movie kind of moment because the doctor comes in and sees him.

[00:22:56] jon: Talks to him, he's cooperative, he's helpful, they wanna know [00:23:00] if they can set up, a line to administer medications and IV and all that. And he's do you have to? I don't like needles, but I guess you can. And, very cooperative, very charming. And the doctor says, okay, you're being admitted.

[00:23:14] jon: We're sending you upstairs for a ct. We're and that's when things started happening, was on, that was on that day. 

Finding KLS Specialists

[00:23:21] jon: That was the path that eventually got us to shan's for the diagnosis and then what I call the grandmother brigade. My mom and her friends started researching the heck outta KLS.

[00:23:34] jon: I remember my mother calling me and saying. We can't find anything about this disease. There's no information. It's that's right, mom. There, there is nothing out there. And I searched. I was personally calling hospitals all over the state of Florida I got a referral from a friend of my mother's whose son was a rabbi who visited sick kids in the [00:24:00] hospital.

[00:24:00] jon: Or I guess sick patients. And as hospital chaplain, he had a connection to a neurologist. I called the neurologist. I said, I don't mean to be rude. We have a diagnosis, we're comfortable with the diagnosis. We just want somebody who understands what this disease is. We have questions and nobody seems to have any answers for us at all.

[00:24:21] jon: And somehow I missed the call back, but the voicemail I got was, I'm not the doctor you want. 

[00:24:28] kerly: Oh, wow. 

[00:24:29] jon: But you need to call this doctor in St. Petersburg. She can help you. And I did. So we called all Children's Hospital at the time, I did not know it was associated with Johns Hopkins. So I called All Children's Hospital and said, look, I don't mean to be rude, but this is our situation.

[00:24:50] jon: We have a diagnosis. Same thing I told the previous. I said, have you ever seen this disease before? Yes. What? [00:25:00] Yes. Have you ever treated Yeah I've treated a few patients with KLS. Really. And that's when I ended up doing, the Google, the quick Google background search, found out that she had started a hypersomnia clinic a pediatric hypersomnia clinic in Texas and had moved to Florida and she actually had credentials in the area of hypersomnia.

[00:25:24] jon: And it was I consider her to be our guardian angel because we got an appointment with her. She insisted, she says, you're going to go, you're gonna go stay at the Ronald McDonald House. Oh, I can afford a hotel. No. You are gonna go to the Ronald McDonald's house. And we went to the Ronald McDonald's house, which was again a wonderful experience being there with other parents, with kids with rare diseases.

[00:25:49] jon: And, we're thinking our kid just sleeps a lot. He's rude and he sleeps a lot. Yeah. These people, these kids are really sick. And we would. Tell our story and they'd say, you haven't met a doctor who knows [00:26:00] this disease yet? No. We're still looking. And we'd get all this empathy from those people.

[00:26:04] jon: It was like, wow, we must be in it much deeper than we thought we were. And she sat with us for three hours, answered every question. 

[00:26:12] kerly: Wow. 

[00:26:13] jon: Yeah. I She did an in-depth intake on him, making sure that it, really was KLS looking over the other materials from the other medical establishments that had examined my son.

[00:26:24] jon: She says, are there any other unusual behaviors that you've seen? I already told you the story about the maple syrup disappearing overnight. And I said, oh, something like the maple syrup. Because I had read in the literature somewhere about another patient who had drunk a bottle of chocolate syrup while an episode.

[00:26:40] jon: I was like, oh yeah, this is the same thing. And she said, yep, that's it. Checked it off her checkbox, and then it was sit down and just, every question we had. And it was really wonderful. We had questions about medical, about some of the medicines that were being explored.

[00:26:58] jon: She said you'd have to see Dr. [00:27:00] David Rai at Emory University about those questions because he's the one studying drug interactions with KLS. I said we've called over there, but we can't get. And she says, oh, I'll get you in. And so about three, it was about three weeks after that we beca that our son became a patient of Dr.

[00:27:16] jon: Rai's in Atlanta which is just a short five hour drive from our house. That's how he, we ended up there. At the time Rai was on the East coast in Atlanta looking at possible drug treatments. Mignon is over on the West coast in California, which is a far, far distance from where we are.

Conference and Community

[00:27:37] jon: 2018 there was a KLS conference that a lot of us got to meet each other for the first time. We had never met another parent who had been through this. We became very friendly with another.

[00:27:46] kerly: How was that? Ross, you have any questions? 

[00:27:49] ross: Yeah. Just know if there was any opportunity for your son meet of the KLS patients as well?

[00:27:56] jon: Yes. I said at the 2018 conference he [00:28:00] did. Unfortunately he doesn't really remember much of that and he's been having memory issues. I think beyond what some KLS patients would expect. We've looked into that, but nothing's been diagnosable in regard to that.

[00:28:15] jon: But we've become friendly and he knows some of those other people. He's not very interested in exploring the KLS community per se. He would like to put as much distance between himself and the disease as possible. I can appreciate that. But we've been there we've done that.

[00:28:36] jon: What he wants is, more time to, to do his things and not, disappear from the world for weeks or months at a time. 

Episodes Over Time

[00:28:47] jon: For the last couple years actually the episodes have been very minor. We've had a couple years now where the worst we've seen is, two, three days where he's very sleepy, a bit muddle [00:29:00] headed, and then returns to basically being fully functional again.

[00:29:05] ross: How long are those periods of functionality? Are they getting longer? Are they a few days, a few weeks? 

[00:29:11] jon: No. No. So he had a very nasty early start to the disease. I would say at its worst weeks We would have him back among us for a few days, maybe a week. And then he'd fall back into episode again.

[00:29:30] jon: As time has progressed the episodes have gotten further apart and not as severe. We've been through a period, I'd say maybe two years at least, that the worst he's had are a few days back to back of mental fog and excess sleep. He'll disappear for a little while and we find out he's been napping upstairs, which is not his habit.

[00:29:57] jon: He's had a episode and, he'd wake up and [00:30:00] he'd be angry that he fell asleep. Id say, you've got a sleep disorder, sleep, if that's what you need, do it. 

[00:30:06] kerly: Do you have any other kids? 

[00:30:09] jon: No, we don't. 

[00:30:11] kerly: Ah, so there's no other children that are like disrupted or anything from his sleeping. So what's the longest time he's ever slept?

[00:30:23] jon: The longest time eyes shut, gone from everybody else in the house, probably about 19 hours. 

[00:30:35] kerly: Ah.

[00:30:35] jon: But that would be day after day of 19 hours in bed. Only coming out for bathroom and food. 

[00:30:46] kerly: Oh. 

[00:30:47] jon: He would do that for sometimes weeks at a time, then there'd be times where we'd see mostly just, altered behavior and we'd know he wasn't really all there. That would go on sometimes for [00:31:00] weeks sometimes in excess of a month or two.

The Fog Is Worst

[00:31:03] kerly: Which one do you think as a parent you find harder? Or has he expressed is worse? If he sleeps for a long period of 19 hours? Or if he's in this sort of fog. 'cause he's not his normal self, like when he is not having any symptoms at all. But he's almost like in this daze where he's not having these long naps, but he's not really there either. 

[00:31:28] jon: That's the worst, 

[00:31:30] kerly: that one? 

[00:31:30] jon: That is absolutely the worst. It's like having my child stolen from me. He's not really there.

[00:31:37] jon: He's in the space, but he's not really there. Some of my research that I've done reading about KLS , and neurotransmitters and everything, apparently a lot of these neuro pathways are very similar to a lot of drugs that are used. And the, drugs and alcohol have similar [00:32:00] effects on the brain over time.

[00:32:02] jon: The best description I can get is he would sometimes go through these long periods where he was like a very mean drunk. He wouldn't remember it, but he'd be rude, he'd be very combative. I'd start off having a, what seemed to be a normal conversation with him then you could tell that somewhere in, in that period, he kinda left the room, though he was right in front of me because something that would be a very minor issue all of a sudden became a point of major contention, the hill that he would die upon.

[00:32:40] jon: Okay, if that's what you feel, I guess if that's the way you feel about that, I guess that's okay. I just exit the conversation because I realized at that point I was no longer having a rational conversation. But there were times when he was just not himself.

[00:32:52] jon: Early on, for us about the time he was diagnosed or probably leading up to that was the worst. We [00:33:00] tried hiring somebody. My wife and I were both telecommuting for our work and. I had a small business, I ran from the house. My wife was working for a software company elsewhere.

[00:33:11] jon: And so we really needed to be able to function in the house during business hours. So we hired somebody to keep an eye on him and just be his companion and help keep him outta trouble, as it were. One day they had spent the whole day watching the same movie. And I say, he was like a mean drunk, but sometimes he'd be like, he'd be almost infantile.

[00:33:33] jon: The range of, abnormal behavior was a wide range. They had watched the movie Moana, 'cause he had taken a liking to that movie. She came the next day to keep an eye on him 'cause we were at work and apparently. He had said to her, have you seen this movie before?

[00:33:55] jon: I love this movie. Have you ever seen it? And she came down downstairs to see my [00:34:00] wife. She says, we watched this three times yesterday, and he had no idea that I had seen the movie with him. She says, this is real. And that's kinda the reaction we would get from people. I remember going to school one day when he was still at the high school and a new semester had started.

[00:34:18] jon: So I figured, oh, I'll be the good dad. I'll run down the school and pick up the syllabus for each class. And that way, if there's any chance of him getting caught up, we'll have at least the syllabus to look at. , We will know what's going on. And I said something about, oh, I can't wake him up today.

[00:34:37] jon: There was another parent there who kinda rolled her eyes. Had some snarky comment about, oh gee, you can't wake your kid up today. I was like yeah, you gotta tell 'em, they gotta go to school. And thank God we had actually had a very frightening experience. The end of the previous school year where he had started hallucinating.

[00:34:59] jon: We think [00:35:00] it might have been the anti-psychotic that the psychiatrist had tried him on. And he was actually hallucinating and hearing voices and the school social worker was there. So when I , came to pick up the syllabus and she saw this parent reacting to, I can't wake him up.

[00:35:18] jon: She didn't even let me get riled up. She just got between us and said his kid is really sick. There's a reason he can't wake him up. Don't give him any trouble about it. Thank God because I probably would've ripped her head off by the time that conversation ended.

Hallucinations and Dreaming

[00:35:35] kerly: Ross, do you have any more questions? 

[00:35:37] ross: Yeah. I'm interested in this. You mentioned the hallucinations and that brings me onto a lot certainly with my sleep disorder. A lot of people have spoken to who've got narcolepsy. 

[00:35:49] jon: Yeah. 

[00:35:49] ross: One of their wrong symptoms is very vivid dreams.

[00:35:54] ross: That are almost so vivid that it's difficult to tell what's being [00:36:00] awake and what's a dream.

[00:36:01] ross: I was wondering if with KLS is that when they have those long periods of sleep, is it very dreaming intensive sleep? Or is it rather the sort of. Very deep sleep. That's not associated with dreams.

[00:36:18] jon: So I, I can't speak to that from personal experience and from firsthand knowledge. What I can tell you is that we would have conversations with our son and he would indicate to us that events that we were aware of as being events in the real world, he had mistaken as being dreams. And he was convinced that they were not things that actually happened.

[00:36:46] jon: He was convinced that they that he had dreamt the entire experience. And that was one of the things, when we were first investigating the disease, my son and I had, my wife had gone somewhere else and I was [00:37:00] at home alone with my son for a few days and we'd watched a bunch of movies I had said something about one of the movies we had seen. He says no, I remember seeing the trailer. I don't think we ever saw the movie. I said yeah, we saw it. Remember this scene and that scene, he says, oh, did we really see that? 

Dreamlike KLS Reality

[00:37:17] jon: I thought that was a dream. We had a lot of that somewhere along the line he had heard Simon and Garfunkel's Sound of Silence and he felt a very visceral connection to that song.

[00:37:30] jon: About the, there's a series of paradoxes that the song has songs that are never sung and things like that, that go on and on. And that just struck him very viscerally that, he's, he was in this world between being awake and being asleep and couldn't. He couldn't differentiate between the two for a while, certainly for a couple, for the first year or two.

[00:37:57] jon: Dealing with the illness [00:38:00] and, having that other thing as I mentioned before he'd find himself coming out of it in places where he didn't know how he got there and he just kinda rolled with it.

[00:38:10] kerly: That must be quite scary.

Faith Communities Respond

[00:38:17] kerly: I wanted to ask, you mentioned about the synagogue.

[00:38:20] kerly: How has your synagogue community, how have they been with your son's diagnosis with you and your wife? I come from a Christian background and I found it quite difficult when I was diagnosed with narcolepsy. It wasn't taken very well by some of the members in the church from a spiritual perspective.

[00:38:42] kerly: It took me a while to get those voices out of my head and not feel like, like I know that I had a diagnosis. Yeah, that was medical and they were scientific, but trying to explain that to people who wanted to try to tell me that I wasn't being healed because I wasn't praying [00:39:00] hard enough and stuff like that.

[00:39:01] jon: Yeah. It's been an interesting experience. As I mentioned we're involved in scouting which is also a very tight knit community. Our experience with the synagogue, and again this is gonna be somewhat related to theology nobody tried to blame any of this on spirituality or lack of spirituality it was seen as, it is as a medical crisis. That said, there were very few people in the synagogue who, I wanna say this as well as possible without 

[00:39:40] kerly: I know. 

[00:39:41] jon: Consulting anybody. 

[00:39:42] kerly: Yeah. 

[00:39:42] jon: But let's say a lot of people said oh, if you ever need anything, just let us know. At that point in our lives, every day was a crisis. Especially when he was, in these rolling episodes where, we'd get him for three, four days at a time, every [00:40:00] day. I didn't know who was coming down those stairs, whether it would be somebody with, the inside of a small child, somebody who'd be a very aggressive teenager.

[00:40:13] jon: I didn't know who that was going to be, who I was gonna have to deal with that day. Every day was a crisis. Tell me what you need, oh just let us know if you need anything. It's no, tell you what. Yeah. You when you're ready to actually do something. Just show up. I'll point you at it that moment, but there's no way to call. 

[00:40:32] kerly: Yeah. It's not like he, you're sick and I needed to cook some chicken soup or something like that. Yeah. But 

[00:40:37] jon: if you did that, it would be great. 

[00:40:39] kerly: Yes. 

[00:40:39] jon: But if you're waiting for me to call you and tell you what to do, I don't have time for that.

[00:40:44] jon: I'm dealing with a crisis every minute of the day. 

Scouting Steps Up

[00:40:52] jon: Now, I'll contrast that with the scouting community, and if you know anything about scouting, the motto. Be prepared. I think that's the universal scouting motto. We brought this in and I remember [00:41:00] at one point we were, we went to a camp to a camping event.

[00:41:04] jon: And my son had wandered off and I didn't know, he hadn't told me he was gonna wander off. Somebody asked for help and he just went, which is perfectly normal. Any other scout would do this. But under the circumstances, I was so tightly wound at the time and nobody could tell me where he went. If somebody had said, oh, hey, we saw him down at working in the campfire or something, I would've been fine, but I had no idea. At the time he had several walking experiences we'll say, where he wasn't really there, but he would just go wandering and on a 600 acre campground in the north Florida woods, that wasn't the best place to just go wandering.

[00:41:46] jon: I said something to one or two parents and. In the time it took us to get a search party together, people with big pickup trucks and bright lights and ready to just dive [00:42:00] into the woods. He came walking outta the woods with two other scouts, and he is, oh, yeah, they asked me to help.

[00:42:08] jon: So the scouts were fantastic.

[00:42:09] jon: We went to a camping trip a couple years later elsewhere. And he was not doing well and he needed to go down. He had overheated and he needed to sleep. And of course, under those circumstances as stressed, as he was, I didn't know if this was gonna be a two hour nap or a two day nap or a two week nap.

[00:42:30] jon: I had no way of knowing. My scouting comrades, the other adult leaders, it's okay, we're gonna get him down to the me to. To the infirmary tent or build the infirmary building. And we're gonna set this up and we're gonna, this is how we're gonna change the carpool arrangements to make sure everybody can get back.

[00:42:50] jon: You can leave as soon as, you need to, we can help you load up your tent. Or actually they said they were gonna take my tent for me, and everybody was ready to just step in. That was [00:43:00] such a wonderful experience. I've now given 11 years to my scouting local council because everybody's just been fantastic.

[00:43:07] kerly: That's beautiful. 

[00:43:09] jon: I remember telling one of the doctors in our synagogue about the diagnosis. He said, oh where you been? I said we've been dealing with this thing at home. And he looks and I saw him look up the diagnosis on his phone real quick, and he's reading it.

[00:43:20] jon: . He puts his hand on my shoulder, oh, I'm so sorry for you. And then just wandered off. , We weren't stigmatized for not having done something right as much as people just weren't prepared to deal with the reality of what we were having to deal with day to day.

[00:43:40] kerly: Yes. 

[00:43:40] jon: We really learned who our friends were. 

[00:43:42] kerly: Yes, we do. 

Small Accommodations Matter

[00:43:43] kerly: It can be quite sad because I remember recently I went back to mom's church and it's changed a bit 'cause they joined two churches together after COVID. There's a new influx of a lot of old people and one particular couple I guess they [00:44:00] have some back issues or something. They've brought in special chairs for them. And so I was sleeping as I, usually do at church or whatever. And then before, like mom would say, do you wanna go outside for some fresh air? Or some stuff like that or whatever. But then this time she said to me, oh, you can go to the back and lie down.

[00:44:19] kerly: And I was like. No, it's fine. I'll just I'll be fine. I'll just sit here and sleep. And when I wake up, I'll wake up. And she goes, no. They have a chair in the back that you can lie down on. And I said, no, that can't be true. And I went to the back and they had a lounge chair, like what you'd see in a beach or something.

[00:44:34] jon: Yeah.

[00:44:34] kerly: I said, I can't believe it. I was at that church from I was seven years old. I was diagnosed when I was 18. I had started since I were 15 and now this many years later, because some older people had come into church with some type of pain. They have this chair. I just went in there, sat down, I laid down, I had a nap for half an hour, and I woke up, felt refreshed, and joined back the service.

[00:44:55] kerly: And this is all I needed. 

[00:44:59] jon: Yeah. 

[00:44:59] kerly: All [00:45:00] those years back and it wouldn't of cost 40 bucks to buy that 

Caregiving Pauses Careers

[00:45:04] jon: yeah I was a more or less freelance graphic designer. I was doing some website hosting at the time , when my son was diagnosed. , While I'm working at home, I can work through this.

[00:45:14] jon: And then I realized, no, I can't work through this. And I shut everything down. I just recently we've gotten to the point I said he's gotten so much better. We've been through a period finally of a couple years where, he was pretty much taking care of himself.

[00:45:28] jon: And I'll loop back to that in a second. But, I'm now having an opportunity to get back into some sort of professional role. I'm not that old yet. I still have a couple years to do something, but I don't wanna sit at a computer the rest of my life. Yeah. So I've been developing my woodworking and my personal artistic stuff that I wanna do.

Adult Body Teen Mind

[00:45:49] jon: But, I said I wanted to look back, my son is in his mid, early twenties, I think back on what I was doing when, in my early twenties. He was basically absent from his [00:46:00] own life for most of this period. One of our doctors has said to us, you just have to understand that not only was he absent from your life, he was absent from his own life.

[00:46:11] jon: And he hasn't had the opportunity for the emotional development that would've normally happened during that period. Yes, the body's mature but the mind hasn't had those experiences to, to grow on. It is very much like having a teenager at home who can now drink legally. He's a legal adult in every other way, but in many ways it's like dealing with a 14 or 15-year-old some days. The reason you can't do that is, is because you just shouldn't be doing that. And here, let me explain this to you as best as I can. And yeah, you're an adult and if you wanna walk out the door, you can, but understand there's some things about the way the world works. You need to be cognizant of those things. It is been very difficult. He's [00:47:00] maintained really one friendship through this entire experience. Thank God for his friend. And he has, this year started actually been, he's been, he's 22, he started when he was almost 17 , at the community college. He's just now starting to make some friends at the community college because he's been well long enough to, go do a little bit more than just go to class and join the one organization at school that he got drafted into thank goodness. Yeah. He's very bright, thank goodness. It is not just a proud dad talking, but he really is. He's quite bright, so he's on the school competitive trivia team and stuff like that. He is taking some advanced math courses and he was labeled as gifted before he became ill.

[00:47:55] kerly: That's really helpful because I can imagine how hard it would be if you [00:48:00] weren't as bright and you miss so much school. And you're always in catch up,

[00:48:04] jon: He's got that side going for him. But now it's, so what we're working on now is just a lot of the, a lot of that social behavior stuff, just how to meet people, how to interact now as an adult with people, especially people who are gonna see a 22-year-old bearded guy with hair down to his shoulders and, a big stocky guy because KLS affects appetite and he eats, unfortunately, like somebody with KLS and and how do you introduce yourself to somebody? I'm not as tuned in on the way young people interact except for my scouting experience, as he as people his age are.

[00:48:46] jon: And so I'm a very poor tutor as, or very poorly equipped to be a tutor in this area. I can only tell him how old people behave. It is funny he had a fellow student stop him who's a couple years his junior not much [00:49:00] younger. And they said, Hey, how old are you?

[00:49:03] jon: And he told them and they said, wow, we thought you were like 30 or something. Yeah. . It's that whole experience of, I, I've been dealing with a rare chronic illness, which I know puts certain life experiences in your corner that can I, at least it's my feeling. Make him sometimes act cautious.

[00:49:28] jon: Like a, like an older person. 

[00:49:30] kerly: Yeah. Yeah. Which is which totally understandable. 

[00:49:34] jon: Yeah. But then the other side of it is, people see him like that is dude, if you saw him on days when he's acting like he's,

[00:49:40] kerly: yeah. The, 

[00:49:42] jon: 14. Some of these assumptions he makes about the world, which are no different than what I think most teenagers would say about the world.

[00:49:49] jon: Yeah. Or think about the world.

[00:49:51] kerly: Which is totally understandable when you think if you're not having those experiences to develop these things, you wouldn't know. It's almost like if you were, [00:50:00] you lived in the forest or something and you were homeschooled, then it's a little bit like that.

[00:50:04] kerly: And you went out and someone dropped you in New York. It would be scary. 

[00:50:09] jon: That's our reality is that, on the one hand we, we have this adult who lives, in the upstairs bedroom who looks on at first glance very much like an adult. And then we have to discuss things like, okay, if you're going to this type of event, if you're going to talk to people in a more professional environment, you can't just go in sweats.

[00:50:34] jon: You do have to dress appropriately for certain restaurants, whatever this experience is. Yeah. Why? It's oh gosh, I do, I really have to do the other experience. I've had and I'm sorry, I don't have a specific example, but , I started having these conversations with my son and the topics go A, B, C, G, and it is wait a second.

[00:50:58] jon: Stop for a second. [00:51:00] What happened to all the letters in between? It is what do you mean? It's you missed a whole bunch of stuff that would normally be considered. He goes, oh, I guess I just didn't know that. It's like how did you get 

[00:51:14] kerly: so 

[00:51:15] jon: far 

[00:51:15] kerly: ahead? 

[00:51:15] jon: Yeah. And so I refer to 'em as holes.

[00:51:20] jon: There's just these holes in his experience. So there will be times when he, I will be talking to him and it will be a very adult conversation, and then we'll just you're walking down the path and you step in one of these holes and it's like, how did I get here? Just a moment ago we were having this very mature conversation, and now we're, I'm having to explain things to basically a kid and it's oh yeah, he's, in some ways he is. 

[00:51:45] kerly: Yeah. 

[00:51:46] jon: I call it parenting the advanced course. 

[00:51:48] kerly: Yes, I like that. 

[00:51:50] jon: Yeah. 

[00:51:51] kerly: Ross, do you have some more questions?

[00:51:53] jon: Sorry if I've been talking over you. 

[00:51:54] kerly: No. It's absolutely fine. 

[00:51:57] ross: The more you talk, the better it's about [00:52:00] your story and your experience with your son. 

Grief Counseling And Growth

[00:52:02] ross: I was thinking very much about what you were saying about having missed out on parts of his life and he's clearly missed out on a large chunk of his teenage years.

[00:52:16] ross: And those are very important years socially and academically. Now a lot of us in the narcolepsy in the IH community, I don't know if this is relevant to him, it might be, but a lot of us, we find that we go through a kind of grieving process where we grieve the years that we've lost the opportunities that we've lost the friends that we didn't make because our circle of friends and families just get smaller and smaller.

[00:52:49] ross: I think we hit points maybe sometime around middle age, where we look back. We've especially, it's difficult for people who were bright, [00:53:00] we look back and that successful job didn't materialize and that advanced degree didn't happen and that family isn't there.

[00:53:10] ross: Now is he getting some sort of support, like counseling for going through those experience that he's missed out on? Or is it looking brighter now that KLS period they're getting shorter. That he might just be able to springboard off this now into something much more hopeful? 

[00:53:35] jon: So let me begin by saying I absolutely identify with what you're saying.

[00:53:40] jon: I will say as parents, we certainly went through a grieving process. One of the things that has been very difficult, at least until recently, is hearing about the success of our peers kids who are, his age and, they're going, they're finishing [00:54:00] law school, they're finishing their college degrees and graduate degrees.

[00:54:04] jon: They're going on to professional opportunities, and it's hey, our son has finally completed a full semester at the community college. Yay. He woke up today and took out the garbage. Yay. Those don't quite have an equivalency. Parents you certainly want that. In his case we're dealing with some other issues, including, I, I hate the term, but comorbidity of high functioning autism. Never really had a huge circle of friends, but he was before his illness, a very gregarious person, and he is more withdrawn today. However, he's very gregarious online and he has built his own social group online.

[00:54:54] jon: And I'm trying to pull him, not entirely outta that world, but I'm trying to [00:55:00] get him to interact more face-to-face with people in the physical world. But he's an avid d and d player. He plays with an international group. He's always checking to see what time zone, what's happening in the other players' time zones and things like that.

[00:55:17] jon: And so he, he has built that community as far as professional counseling. I can tell you the door has been opened for him. Should he want to pursue that. I will reflect back to what I said earlier. It's very much like dealing with a teenager. I, you can lead the horse to water, but you can't make it drink.

[00:55:39] jon: He thinks he knows better about some things and I can make recommendations, but he's not ready to take those yet. I'll give you a wonderful case in point, and it is not directly about counseling, but . It has to do with school counseling. And that was, he needed to see his academic advisor about something and he kept leaving [00:56:00] messages.

[00:56:00] jon: He says the call queues are so long and I can't get through and nobody's answering the phone. So I just kept leaving voicemail messages. And he says, if you go there in person, you have to sit there and wait for hours to see anybody. And my wife and I looked at each other and we looked at him and said go sit.

[00:56:20] jon: But it's hours and hours. It's yes. Welcome to reality. This is how, being the squeaky wheel, being the annoying individual who really wants something. This is how you get it done. It's not, you can't just phone it in. You can't just send an email and get everything done that way

[00:56:43] jon: This has to do with, I am certain that if he had these experiences between the ages of 13 and 18, he'd know this by now, we're having to explain this to somebody in their twenties, not because he's been spoiled or, we've [00:57:00] made an easy path for him. He just wasn't there to have the experience.

Hunting Knowledgeable Doctors

[00:57:11] jon: I keep a file. Which thankfully, have not had to dive into of late, of all the medical stuff that we had, that we've been through. It is a big thick file. We were advised, keep all the medical records in physical form. If you ever have to go see somebody new, you'll have it.

[00:57:33] jon: You won't have to worry about being transferred and so forth. I know where we've been these last few years. There is no doubt. And trust me, if there was a doctor that I felt we needed to see, I would've sat there for hours. I searched for months to find any doctor who'd ever seen KLS before. It is so terribly rare. One of the most frustrating experiences, as a parent caregiver was that my personal [00:58:00] thing is I will read all the medical literature I can get my hands on, but I'm not a doctor. I sit there with a search engine in one hand and the literature in the other, and I'm looking up medical terms as I go through. So I think I have a sense of what's going on and, the persistence required to get anywhere with all this, I is just staggering.

[00:58:25] jon: I, I hope it's better now. And I said we, he was diagnosed was it seven, eight years ago? But there was just so little information and one of the most frustrating experiences. Now I remember where I was going with when I went down this trail, I'd make a request to the doctor and say, Hey, I read about this thing do you think we should pursue it?

[00:58:46] jon: And she said, you're calling the shots. She says if you suggest something that I think is medically outta line, I'll stop you. She says, but you've done so much research on this and you've been [00:59:00] living this experience every day. She says, I've got one patient, you're getting information at the time , from Atlanta.

[00:59:07] jon: Our specialist in Atlanta is now retired. And she says, you know what you're doing. If you come across something interesting and you bring it to me, if it looks like junk science, I'll tell you says, anything you need, you just ask. We'll get it.

[00:59:21] jon: And we recently had an experience be because my son had to withdraw from this la latest semester at school. We needed a doctor's note and the doctor said, write the note for me. I'll look it over, and if everything's right, I'll just sign it. I did what everybody does in 2025. I went to my favorite AI put in all the information, I put the roles of the individuals in, I put the diagnosis in, I put in the accommodations I wanted from the school, and I said, present this to me. It was as good as letters that I already have on file from Emory University, from Johns Hopkins, or from those doctors.

[00:59:58] jon: It really was, it was a good, [01:00:00] solid letter. And having read enough of these, at this point, I knew it was a solid letter. I took it to our doctor, and a few weeks later, she finally got around and signed it. But what I want more than anything else, as a parent dealing with this illness, is to have a knowledgeable and literate physician I can turn to when there's an issue and somebody who can say, this is the path or this is what to expect with time.

[01:00:28] jon: I guess at this point . I've seen enough, I know what the episodes look like. I know where we were five years ago. I know how much better it is today with the episodes being so far apart. And so short when they do happen. The other thing is the texture and is, it's the only term word I can think of, but the texture of the episodes has changed.

[01:00:50] jon: Where it was that I couldn't tell you who was walking down those stairs when he was 13, 14 years old, whether he'd be like a small child going, oh, have you seen this movie? I love [01:01:00] this movie. Or he'd be like, a really mean drunk, I wouldn't know day to day or anything else in between or something completely different, now if there's an episode, he is a little grumpy. He can't follow a conversation as well as you would want him to. He had a few days recently where he was sleeping 16, 17 hours. But that's the worst of it now. And we are, in such a better place. But, boy, it would be nice to have a doctor who's been through this, who has seen this, who has had longitudinal information on KLS patients who can say, Hey, yeah you're right on track for what we expect.

[01:01:43] jon: Or the research indicates that, Hey, we need to work on this or that, or, some resocialization stuff, whatever. I really feel many days it's, how, if I have to deal with the disease. Which I said I'm not having to do that very much anymore, but if I have to, [01:02:00] boy, it would be nice to have somebody, who's been there before.

[01:02:02] jon: There's a little bit of that through the online KLS group on Facebook. But frankly, that group tends to draw mostly parents with newly diagnosed kids. And I read, those posts and when I see something that kind of sets off red flags with me I'll jump in, try to be the level headed person who says no organic foods aren't going to solve this. No your homegrown thing isn't gonna solve it. No, you're not going to suddenly discover the cure overnight if you read the literature more closely or if you try this herbal supplement or, I've now been in this club long enough.

[01:02:40] jon: Welcome to the club. None of us wanted to join. 

[01:02:43] jon: There was a time when I was one of those hopeful desperate parents, looking for a better outcome. 

KLS Trajectory And Texture

[01:02:51] jon: One of the things we've learned is that there is almost an expected trajectory with KLS.

[01:02:59] jon: Dr. [01:03:00] Ul in Paris did a session with the KLS Foundation. A big zoom call answered a lot of questions. She's one of the leading researchers in KLS and two of the big things that came out of that call that I really appreciated, was that they are seeing what the literature used to indicate that the disease was active on average eight to 10 years, or eight to 12 years, whatever that number is.

[01:03:24] jon: What they're seeing now is that basically in that same range, the disease does not go away. But it is, as I refer to it, this change in texture. 

[01:03:37] jon: It becomes manageable. The episodes get further apart, life becomes manageable. You can say, Hey, look, I'm probably gonna be sick sometime this year.

[01:03:46] jon: Or next year. I know I'm going to be out for whatever period of time, and I will not be in a position to advocate for myself when this happens. But it will eventually become [01:04:00] a manageable condition over time for most people. Not everybody. And I think what we are seeing is consistent with that, I hope.

[01:04:12] jon: It was really miraculous. We did, we hit that , eight year mark. 

[01:04:15] jon: All of a sudden it was like we don't have our son coming down as a nonverbal child who does all kinds of odd behavior. 

Odd Episode Warning Signs

[01:04:30] jon: One of the things that was very disturbing early on that we thought was intentionally destructive behavior was he would start taking apart electronics, things like VCRs he would find them and he would pull out the motors and then start pulling all the wire off the armatures of the motors, all that little thin wire, yards and yards, meters and meters of hair, thin wire.

[01:04:56] jon: He'd just pull , every last screw. One of those [01:05:00] episodes hit him finally a couple years later after the diagnosis, and he was actually verbal and I was able to talk to him through it. He had lost a calculator sometime during the school year. We bought him a new one.

[01:05:17] jon: And he expressed a need to take apart the, something. I said what about the old calculator? There was no rhyme or reason to it. It was just he felt a compulsion to do this. But very early on it was, very disturbing. Yeah. 'cause we'd find the TiVo taken apart., We had old electronics, old outdated things like an old VCR. Unfortunately he destroyed all the VCRs in the house. And we still have a few tapes. But, it was just, those kinds of odd things, the funniest thing. If there's a funny side to any of this is one of the signs I had that the episode was coming was that he would stop closing doors.[01:06:00] 

[01:06:00] kerly: Ah, that's interesting. 

[01:06:01] jon: He just walked through the house. Every doorway he passed through, he opened the door so he could get through and just kept going. No doors closed behind him. The door between the kitchen and the garage door. Yeah. Any door. Went into a closet with the door opened. The door turned, got what he wanted, walked away.

[01:06:18] jon: Completely oblivious to the thought of to the entire concept of closing a door. Yeah. It was, try to find something to laugh about because everything else is so horrible at the time. And that was one of those things. It was just like, here's a diagnostic criteria that I, I haven't seen listed anywhere.

[01:06:35] jon: Has anybody else seen this? A couple of parents said, yeah, my kid does the same thing, just walks through every door and just doesn't close a darn thing behind themselves. Where we are is just is so much better, is a long way. I think we still want to go but it is much better.

Advocacy And School Battles

[01:06:49] ross: I think what's come through as well is for me is that you've done so much with advocacy, the community as a whole and [01:07:00] advocating for your son at so many different levels from when he was like about 12. You've had the cases for him to to see the right doctors. The doctors that have the knowledge and what little experience there is.

[01:07:17] ross: You've had the cases for advocation, facilities for him, and you've ac company accompanied him to, to various things and I just get a sense of how many people there must be out there who don't have a, an advocate because perhaps their parents just don't know or they don't know what to read or they dunno what to search on the insular.

[01:07:41] jon: I think that's probably the biggest issue is that first off, the disease is so unknown, what the disease looks like is so unknown. And then parents, to have a child, like I said, in our case he was never really sick for any length of time ever before [01:08:00] KLS and we had never had to deal with, special accommodations passed a few simple things.

[01:08:10] jon: We'd never had to deal with, any of this stuff to do with school and all that. at one point we actually came to school with an attorney. He was in a school that we were not zoned for in this area. He had been taking Chinese courses in the middle school and he he had already taken high school Chinese in middle school and he wanted to continue.

[01:08:34] jon: Unfortunately it coincided with the illness and he was not really able to continue that. But, the school he was at for a number of reasons, including the fact that it was not on a major road and the school we were zoned for was on a major road, a lot of traffic. I said, I want him here., I don't want him to have an episode where he just kinda wanders off. 'Cause if he [01:09:00] ends up in the middle of the road here, there's probably nobody gonna be on that road. If he does it at the other school, he could end up in the middle of a very busy. And I wanted him safe and we had to bring an attorney to that meeting.

[01:09:11] jon: So yeah that's been my job is advocacy.

Red Button Cure Question

[01:09:21] kerly: John, we have a last question. . A red button question if there was a red button and yourself and your wife could press it to get rid of KLS, would you press the button and why?

[01:09:32] jon: Dear God, yes. . Yes. No, I, oh my God, no. Family should have to go through this. I have seen, I mentioned the conference in 2018.

[01:09:45] jon: Somebody who has since I think risen with the foundation and into a more important role, gave an address to the parents and it just went on and on about how difficult it was and how it was to lose their [01:10:00] child during episodes, sorry to be so jaded about it, but we'd been there already.

[01:10:03] kerly: Yeah. 

[01:10:04] jon: I hear you lady. But we've all been there. , No parent wants to see their child go through difficulty, especially a difficulty that could potentially be avoided. , There are plenty of other challenges in life being absent from your own life for cumulatively a few months or if you've got a milder case of KLS where you're gone for a week, a month, for a few years, or a very severe case like my son went through where he pretty much, he lost years and he really did. He lost several years through all of this.

[01:10:40] jon: Oh, trust me, I have plenty of things that would challenge him. Where would be just fine without people asked. I don't know that there is any benefit that comes out of this. Yeah. You ask me the same kind of question about high functioning autism. No, you ask me about KLS. Yes. Yeah go away. Let's [01:11:00] find the research money. 

[01:11:01] kerly: Yes. 

[01:11:03] jon: Let us find the research money so that you're not just pouring more gas in the engine in terms of stimulants and things like that to make people get up and walk around. I've only met a few people with narcolepsy, but I don't know that the complete absence the way you have with KLS, it's terrible.

Bus Stories And Independence

[01:11:24] jon: My son had to get comfortable with the fact that he was waking up in places where he didn't know, how he got there. When we realized in retrospect what he'd been going through at one point he wasn't old enough to drive. He was taking a public bus home and one day he walked in and he, clearly had been walking some distance in the heat.

[01:11:45] jon: This being Florida. Why are you so tired? He says, oh, I missed my stop. We later found out he slept through the stop. 

[01:11:53] kerly: Yeah. 

[01:11:53] jon: He decided to walk home.

[01:11:55] kerly: At least he could walk home when, that happened to me in [01:12:00] Florida.

[01:12:00] kerly: I was there on holiday visiting my aunt. I was saying to the bus driver was like, where were you supposed to get off? I was saying to him, by the intersection. And I named the place and I said, the Wendy's. And then he just laughed. He goes, there's a Wendy's on every corner. If that is your, description, it's not gonna help you to get, and then I remember the name of the street was commercial something at Boulevard. And he goes, oh, we passed that 10 minutes ago, like 10 minutes on the drive is a long, way that you've got. He just said to me, I'll just stay on the bus and when I see the next bus in opposite direction, I will flag him down and get him to take you and tell him where to drop you off. I was just very lucky that he was a nice driver to do that 

[01:12:40] jon: You were that also reminds me of another great story.

[01:12:44] jon: Our son was learning the bus system around town at one point and 'cause we'd gotten that great medical advice, maybe he shouldn't drive. So he was learning the bus system around town and as a concerned parent, we wanted to give him as much freedom as possible. [01:13:00] So we used things like apple's, find my friends.

[01:13:03] jon: You know where he is. Especially once we were aware of the, what the issues were. God forbid , something should happen. We at least we can track him. So one day my wife and I were watching and he had gone somewhere and next thing we know he's on a bus again, but he's going the wrong way.

[01:13:23] kerly: Oh no. 

[01:13:24] jon: And we were about to hop in the car and go chase down that bus. We realized he had outsmarted us. He realized that the bus route went up just a little bit further and turned around to be the bus coming back the other way. 

[01:13:41] kerly: Ah. 

[01:13:41] jon: There was a storm coming and he didn't wanna wait out in the storm, so he grabbed the bus.

[01:13:46] jon: Earlier, ah, way up and knowing it was gonna turn around he, once again, he had outsmarted us. But, every little episode like that, as a parent, you're looking, you're going, oh my god my, my kid's on a bus going the wrong way.

[01:13:59] jon: You [01:14:00] know what happened? Is he in an episode? Is he not aware of where he is? Thank goodness we survived that experience as parents. And he did just great. He really, he did fantastic. And he frequently does. Yeah. I'm proud of my kid. 

[01:14:15] kerly: That's great. 

Closing Reflections Goodbye

[01:14:16] kerly: John, I wanna thank you so much for coming on and talking to us and giving the parents' perspective. It's actually really nice to hear the other side of the coin

[01:14:26] jon: you're welcome. It's been a pleasure. 

[01:14:29] kerly: Yes, it has.

[01:14:30] jon: I don tell these stories very 

[01:14:31] jon: often.

[01:14:33] kerly: We usually end the podcast by saying, happy, napping, everyone. 

[01:14:37] jon: Yes. I tell people that being the parent of a KLS patient is, it's a strange paradox in which the child doesn't wake up and the parents never sleep well again. So 

[01:14:52] ross: that's nice. 

[01:14:53] kerly: Yeah. I like that.

[01:14:54] jon: Anyway happy napping to both of you.

[01:14:57] ross: Thanks for coming on, Jonathan. 

[01:14:59] kerly: [01:15:00] Yeah, thank you very much. We appreciate it. 

[01:15:02] jon: Goodbye. 

[01:15:05] kerly: Goodbye

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