Unknown Speaker So, to tell you a little bit about myself, I am a pediatrician and a sleep medicine physician. In Kansas City, I work at Children's Mercy Hospital, which is the major Children's Hospital in town. And I've been here about five years, and I really enjoy it. I spend all my time taking care of kids with sleep problems of all different kinds. And it's really rewarding. A lot of times we can help, even if it takes some time. So anyways, today, I thought, there we go. So today, I thought we could talk about three things. One is how to sleep work, normally. Two is what are some common sleep problems that can happen in children? And three is what do we know about sleep and sleep problems and children who also have visual impairment. And so we'll talk about these three things. But I would really like to talk about whatever you guys would like to talk about. So if you have other questions or other topics that you want to talk about, please do use the chat feature, and then they will interrupt me and I'll do my best to answer any questions. Otherwise, I'll just keep rambling on. So please feel free to interrupt at any time. Unknown Speaker So how does sleep normally work? There are basically two things that determine if we are awake or asleep at any point in time. One thing is how long we have been awake. And this is very intuitive, right? The longer you're up, the more tired that you get. If you pull an all nighter The next day, you're very sleepy, right? You, you build up that sleep debt over time, and your body does a very good job of keeping track of that sleep debt. It's like, it's like you have a bank account in your brain just for sleep. And it's a very accurate bank. Unfortunately, you can't kind of cheat the bank here in terms of sleep, eventually, it will catch up to you. So that's one thing and recall that sleep debt or the other term for that is called the homeostatic sleep drive. And that just means the sleep that that you're building up just by being awake. And that starts from the moment that we're awakened in the morning. And in fact, we think that we understand how this works in the brain to some extent, there's a chemical that builds up in the brain. And that chemical as we are awake, makes us feel more drowsy. And that's why we feel more drowsy with more sleep debt. And the effects of caffeine actually blocked that chemical, which is why if we take a cup of coffee or tea that has caffeine in it, that momentarily or temporarily makes us feel more alert. And it blocks that sleep that but of course that's a temporary thing, and eventually it's going to catch up with you. So that's one thing is our sleep debt. But that's not the only thing. Because if that was the only thing that determined if we were awake or asleep at anytime, we would have a sleep schedule that kind of look like an infant. So what is the sleep schedule an infant look like? Well, they tend to be awake for a few hours, and then they tend to be asleep for a few hours. And then they tend to be awake for a few hours and be asleep for a few hours. And they alternate throughout the day. Kind of a 24 hour cycle like that and little chunks of sleep and chunks of wakefulness without really good consolidated sleep at night until you know four months, six months of life and and really not staying awake for a really, really long periods of time during the day until that time as well. So there's something that's happening during that time that's changing. And there's something that is keeping us awake during the day and is counteracting that sleep that that we're building up. And that other for us is our internal biological clock. And the other term that you'll hear use to describe that as our circadian rhythm or circadian rate drive. And this is our internal biological clock helps keep us awake during the day and it counteracts that sleep death. Okay. And usually what happens is that alerting biological clock increases throughout the morning, has a little dip, usually in the early afternoon, which is why most of us tend to feel a little bit drowsy after lunch has nothing to do with the food. It has to do Do it the fact that your circadian rhythm is dropping off a little bit, and then it gets a second wind. And it really takes off in the afternoon. And that's why a lot of people find that in the later afternoon, they are most alert during the day. And it is, in fact, extraordinarily difficult for them usually, to go to sleep many hours before their usual bedtime for this reason. So we've got the internal biological clock or the circadian rhythm, and then we've got our sleep debt, both of these really working together in concert, to determine at every moment during the day if we are awake, or asleep. And you can kind of Unknown Speaker appreciate the effect of your internal biological clock. If you think about the last time that you went on a flight where you're crossing multiple time zones, you know, if you're overseas or across continental United States, and you get to your destination, think about how you felt for those first several days after you got there. A lot of people feel jet lagged, right, they feel they feel tired during the day, they have a hard time sleeping at night, sometimes their stomach's upset, they just kind of feel sick. And that is jet lag. And what that is, is your internal biological clock is still adjusting to this change in schedule. And our rule of thumb is it takes about a day for every time zone that you cross when you when you fly like that. So it does take your internal biological clock several days, maybe even longer to really fully adjust and for you to kind of feel out yourself again. And so what you're feeling is the effect of your internal biological clock. And we actually think that we know where that biological clock is located. It's right kind of in the middle of the brain, and a really important part of the brain called the hypothalamus, which is kind of the Master Control Center for a lot of things in the body. hormones, temperature, temperature regulation. And sleep is one of those things, and there's a little more group of cells, nerve cells within that part of the hypothalamus called the suprachiasmatic nucleus, try saying that three times fast. It's hard doing the webinar, usually I get a laugh on that one. But anyways, so this little group of cells is sitting right above, where the nerves that go to the eyes travel in the brain. So it can receive input, then from those from those nerves, in terms of visual information, you know, light exposure, things like that. So very important. And this is where our internal biological clock is actually physically located. In that part of the brain, I call it the master clock, because actually, we're scientists are not finding that essentially, every organ in the body has its own circadian rhythm or biological clock, if you take a cell from the heart, or a cell from the liver, etc, and you put it in a petri dish, and you look at the production and it's kind of its cellular machinery, it It operates on its own circadian rhythm. And so that is why if those things get out of dyssynchrony, throughout the body, like when you take a flight across, you know, the ocean or whatever, and you get jet lagged, why you feel so horrible. And one big mystery in sleep right now is, how does that one big master clock in the brain control all of those other clocks throughout the body? That is a big question. But it's it's clearly important. We don't know the answer to that yet. Unknown Speaker So we've got this clock in the brain. What do we think would happen if we took a group of people, and we isolated them and put them in an underground cave without any inputs from their environment? They don't know what time it is. There's no clocks. And there's kind of constant light all the time. What would the sleep schedule be in that individual? Well, they actually did that experiment. And what they found was that people's sleep schedules tended to drift a little bit, and they tended to drift later, about half an hour a day, people would stay up about half an hour a day later, and they give up a half about half an hour a day later. And they would very gradually kind of roll around the clock every day stand up a little bit later. And eventually they'd be completely flipped around. It's just their sleep schedule where days night and night is day, and then they would very gradually get back on kind of the The typical schedule that they were on before. So this told us that, really our internal biological clock is not on a 24 hour clock, it's actually a little bit longer than that it's on, like 24 and a half hours. And so typically, then, in normal life, something must be resetting that clock every day, so that we don't go on the odd schedule and drift around. And that is where life can be vital to helping to entrain our internal biological clock. And so if you don't get that light input, to reset that clock every day, well, then your your internal body clock could wander, just like we described in this experiment, where you're very gradually staying up a little bit later every day, essentially. And there's that that is actually a sleep disorder, that is called non 24. And it is not uncommon in individuals who have visual impairment, not everybody does. But it is certainly a possibility something to keep an eye off or to watch off. So like we talked about, light exposure typically helps reset that internal biological clock every day. And, you know, everybody's kind of heard about the rods and the cones in the eye as the cells that help form images. But there's actually a third type of cell in the back of the eye that is important for light perception, and plays an important part in the resetting of our internal body clock. And those are called melanopsin containing cells. It's, you know, the terminology is not important. It's just kind of interesting, because that is a fairly recently discovered thing, that there's this third type of cell in addition to rods and cones, that plays a very important part. For light perception and sleep regulation. The one the body, senses that light exposure, that signal is sent to many parts of the brain, including the Super cosmetical nucleus, like we talked about. And also there's a different part called the pineal gland. The pineal gland, usually makes melatonin, which is the sleep hormone, and helps us feel drowsy at night. And when the body senses light exposure, it will shut down production of melatonin by the pineal gland. And that is also important for helping in train or sleep quick schedules. So, again, to just summarize, there are really two things that determine if we're awake or asleep. One is the sleep debt that we're building up based on how long we're away. And two is our internal biological clock that usually helps keep us awake during the day, and also needs to be reset every day, so that it doesn't wander off and cause trouble. So that was kind of the first big topic. The next thing that we can talk about are what are common sleep problems in kids? What are things that come in pretty frequently to the sleep clinic that I see. And really, there are four big areas that people come in, where they're having challenges. There are over 70 different sleep disorders that you can diagnose, but really, they fall into kind of one of these four categories. One is problems falling asleep or staying asleep. Another is difficulty with snoring or other breathing problems during sleep. Another is daytime sleepiness and the finals, abnormal movements or behaviors. Unknown Speaker So, problems falling asleep or staying asleep. So there can be a lot that go into kids having problems falling asleep or staying asleep. One big thing that we are always interested in hearing about and and try to emphasize when we're seeing a family is what are the habits around sleep? What are the behavioral contributors just to sleep disorders potentially? And by that, I mean, usually when I'm talking to someone, I'll have them just kind of walk me through typical 24 hour period for that child and that family so that I get a good sense of what their sleep schedule typically is. What bedtime looks like, Is there a lot of bedtime resistance or not? Is the child able to fall asleep without a parent or not? And is that a problem or not? What's the environment that they're sleeping in? What's their bedroom like? Either, you know, distractions with the bedroom or not are they sharing the bedroom etc. Are there things that we can modify in that sleep environment or with the habits around sleep that may help people fall asleep and stay asleep better. And we can all kind of understand this, you know, we all kind of have our way of falling asleep, whether it's having the pillow a certain way, or having the fan on or not on or whatever it is, or having the radio on, you know, those are all just kind of cues to the brain, that it's time for sleep. And if we alter those cues, then that can sometimes make it hard for us to sleep well and engage in that behavior. Sometimes, our internal biological clock may not be in alignment with the schedule that we desire. And so this would be circadian rhythm disorders. And we talked about one of those, which is non 24. Another one that we commonly see, especially in teenagers is one called delayed sleep phase syndrome, that just means their internal biological clock is a little bit, it's shifted a little bit later. So like, they naturally want to go to bed, one or two or 3am, and wake up around noon or something like that. But of course, that's not the world that set the, you know, the schedule that the world is putting out for them to follow, you know, they have to get up for school or work or whatever their commitment is. And so that's where the trouble comes into. And so then how, how can we provide input to that person's biological clock there, so that we can shift it earlier. And there's some things that we can do to help with that. Some people have difficulty with an uncomfortable feeling in their legs at night, that's called restless leg syndrome. That's usually like a creepy crawly kind of feeling in the legs. It's usually both legs, it's usually below the knees, it's just a gotta move, feeling to have to move feeling in the legs at night. And it just, it can drive people kind of crazy. It's really an uncomfortable feeling. And so if that's happening, obviously, that can make it hard to fall asleep at night as well. And there are some things that we can do to treat that. Some kids have nightmares, they have really disturbing dreams that are scary. And so naturally, they don't want to go to sleep. That makes a lot of sense. And so there are ways that we can help kids kind of rescript their wares or deal with them. And so there's some big cognitive behavioral things that we can do to help with nightmares, and ultimately help them get in sleeping better. Some kids have mood challenges, depression, anxiety, or others. And as a part of those mood challenges, sleep disturbance can be a challenge doesn't mean that we can't try to help but it can sometimes go along with having mood challenges. And then finally, medical problems, there are a lot of medical problems that can potentially affect sleep. Some people struggle with chronic pain, reflux skin problems, like eczema. eczema is a huge disrupter of sleep. So it's extremely important to have on your control. And then medications can sometimes have side effects that make it difficult to sleep. Before I move on, I just want to check in with the moderators. Are there questions or comments in the chat? Or do people have things that they want to say? Unknown Speaker Yes, are a couple people with their hands raised? And it looks like some things are kind of coming through the chat. I'm not sure exactly what the questions were. Unknown Speaker I'm Unknown Speaker Ashley, I'm Unknown Speaker gonna Unknown Speaker ask you to unmute if you can. Unknown Speaker Yes, I'm here. Oh, there you go. Hi, yes, I have a nine month old daughter who is blind. We're not sure exactly Unknown Speaker what Unknown Speaker her diagnosis is. But she has very little light perception. And so she does not seem to notice. Whenever we open the curtains or we let more light in in the morning, I was about to ask exactly what you were just talking about how resetting by you know, letting them be exposed to some daylight kind of resets that and she doesn't seem to notice if I open curtains or let more light in during the day. And she's very sensitive to the sun when we go outside. She doesn't like the sunlight even if she has sunglasses on. So how could I help reset that by the light exposure with that situation? Unknown Speaker Yeah, that's that's a great question. And that's a common challenge. So there's an there's kind of two parts to that. One is is that light exposure having an effect on an individual's biological clock and and that can be, I think, hard to determine. Because if you take a group of people who have visual impairment and expose them to light and see what happens to kind of their melatonin levels and this kind of thing and see if they respond, the way that you would expect them, there's a lot of variability. Some people have that response, and other people do not. And it's hard to predict how that one individual is going to respond. So in some people experimenting with photo exposure and seen if that helps with helping them get entrained to the day or not, it may not, but it may. So experimenting with that. The other thing is, all everything else that we do during the day, is a signal to the brain and can help kind of keep our brain on track. Just like light light is the most powerful, but it's not the only one. So examples would be our eating schedule, physical activities that we were doing during the day, essentially thinking about your daily schedule, and how can we keep that on as regimented schedule as possible, so that those are all signals that help keep our sleep on track, as well, in addition to the light, which may or may not be helpful. And then when we talk about some of the studies, a little bit later here in the talk, we'll talk about melatonin as a potential therapy that has been tried in kids with visual impairment. And, and that may be something that can help with kind of resetting the internal biological clock and keeping things on track as well. So it's really a big challenge. But those are some general thoughts about that challenge, that that I usually am thinking about when I'm seeing somebody. Yeah. Good question. Other questions or comments? Unknown Speaker There's some questions in the chat. Um, someone asked if it is safe, and how much is safe to give a child melatonin? Unknown Speaker Yeah, that's, that's a good question and a tough question. So it's tough for a couple of reasons. One is that melatonin in the United States is not regulated, it's over the counter. So you and I have actually not done the study where they go to the, you know, your, your local, pharmaceutical shop and take a bunch of different Melatonin is off the shelf. And you test those melatonin samples, those pills for how much Melatonin is actually in them, versus what the label says. And there's up to 300 to 400% variance in that. And so what's on the label may not be in the pill. And so that's one big challenge is that, you know, we can say take this many milligrams of it. But when we're doing the over counter melatonin, it's hard to know exactly how much they're getting. And so what I would recommend is talking with your kind of proof, your personal you're either a pediatrician or if you have a sleep provider, ask them if they have a brand that they recommend or what their recommendation would be. The other thing is, what dose should be used? That's a obviously very good question. And also challenging because we all kind of do it differently. There are no completely standard guidelines for that in kids. When I'm seeing patients in clinic, you know, for children, I am thinking about, there's kind of two ways that I think about dosing melatonin one is to have the effect of affecting their biological clock trying to turn that earlier or keep it on track. And the other is, am I trying to use melatonin? I don't think that there's a clock problem. I think that they just have kind of insomnia without the clock problem, and I might use a bigger dose for that one. So for the for the kind of use it as a hypnotic use it to make them drowsy. I usually will do three milligrams or something like that 30 or 60 minutes before bedtime. If I'm going to do it as a dose to try to affect their biological clock without necessarily making them drowsy. I will many times actually do it a smaller dose much earlier in the night, maybe point three or point five milligrams about five hours before bedtime, which for most cases like dinnertime, and that's not going to really make them drowsy, but it may help affect their their internal body clock. And so that's my general approach. People it's been tested for insomnia and kids, there's literature published up to 10 milligrams, you know, people, honestly, people come into my clinic and they've been on mega doses, it's kind of it's kind of frightening, sometimes. But my experience is that usually after three milligrams or five milligrams, I don't usually get much more bang for my buck. After that, the actual amount of melatonin that our brains is making naturally at night is much, much less than that. So even at like three milligrams, that is a big dose for our body, in terms of what compared to what it's used to get. So that's, that's a general answer. And then, of course, for your particular situation, ask your child's provider, their pediatrician, whoever they're saying. Good question. Why don't I do a few more slides and then I can do more questions after that. That's okay. Let's see how I'm doing on time. Okay. So. So we talked about behavioral sleep problems, trouble with insomnia. People can also have daytime sleepiness. And there are really four big kind of categories of problems that can cause daytime sleepiness. One is if you're just not getting enough sleep at night, right. So we're building up sleep debt, our biological clock is sensing them, so we feel sleepy during the day. Unknown Speaker Another is that you can be getting enough sleep, but that sleep is just miss timed. And that can be a problem with our internal body clock, like we're talking about with non 24 or other circadian rhythm disorders. Another can be if you are getting enough sleep, and it's properly timed. But there's something wrong with the quality of sleep that you're getting. And the two most common things there would be sleep apnea, or leg movement disorder during sleep. And we'll talk a little bit about that. Coming up here. And then narcolepsy is the other big category that can cause daytime sleepiness. narcolepsy is a disorder where you're extremely sleepy all the time. And it's actually a disorder where your dream sleep, your REM sleep, kind of intrudes in your wakefulness during the day. So you can other can get other kind of interesting symptoms that come along with that, like, you can be falling asleep or waking up and you can hear things or see things that aren't there. And those are hallucinations. And what that is, is actually you're dreaming while awake. Another related symptom would be can be waking up or falling asleep and your brain is awake, but you can't move your body, not even a finger. That's called sleep paralysis. That can be a symptom of narcolepsy, although it's can also be seen in a lot of people without narcolepsy. So if you happen to have that don't automatically think you have narcolepsy. So narcolepsy is another category. And then finally having if you have a person who has other significant medical problems, those can also make them feel fatigued during the day and contribute to them feeling sleepy. So I see a lot of kids who have sleep apnea and snoring. So sleep apnea just means that you have pauses in breathing when you're asleep. And usually, that is obstructive sleep apnea, meaning you're trying to breathe, but your airways collapsing or partially collapsing. And so it's making it makes it harder to move the air. And so when that happens, you're not breathing in as much oxygen, your oxygen level drops a little bit. And your brain senses that your brain wakes you up. That's good, because then you start breathing again. But of course, if that is happening many, many times throughout the night, then your sleep is disrupted. And you can feel tired or grouchy or have concentration problems during the day, despite getting enough sleep. So So snoring and sleep apnea can can really be a problem. And usually the really the way that we make the diagnosis for sleep apnea is by doing a sleep study, which is where we have the child come in for one night in the sleep lab. We hook them up to a bunch of sensors, so they get a lot of stickers, but there's no needles, and then they go to sleep naturally. And then the morning they wake up and they go home. And throughout the night we watch their sleep, the type of sleep that they're getting the number of pauses that they're having an ingredient to see if they have sleep apnea or not. And if they do have sleep apnea, then the question is what do we do about it? in adults who have sleep apnea, usually the first thing that we do is see Pap, U and C pap is where you wear a mask on your nose at night. And that is connected to a machine that takes air from the room and it blows it into your nose. So it's just air and that extra air helps keep the airway open so that it doesn't collapse and causes pauses in breathing. And that works very well. And that is a treatment option in kids. But usually in kids, we're usually first thinking about are the tonsils or adenoids big and are those a cause for the child sleep apnea. And if we take those out, is that going to fix your sleep apnea. So that's usually where we'll start. If the child has obstructive sleep apnea is having them visit with one of our nose and throat physicians to see if they think there would be a good candidate or not. So C, pap or tonsils are usually what we're talking about for kids with obstructive sleep apnea. And then finally, we've got abnormal behaviors or movements during sleep. And this is a big category of Unknown Speaker things that you can see at night when someone's asleep, we'll but if you you know, watch, watch someone sleep it can, you can see some, or notice some odd behaviors or movement, sometimes, then you may have experienced as you were falling asleep, just as you're drifting off your, your whole body kind of jerks, and you're awakened suddenly, or they felt like you were falling, and then you hit the bed, and then you woke up. That is called the sleep start, or hypnic jerk. And that's completely normal. It's nothing to worry about. But it kind of gets your attention. Some of these kids that we see have a lot of leg movements at night. And that can disrupt their sleep and wake them up a lot. And that's something that we can check for on a sleep study. And the name that we give to that is periodic, like movement disorder, just means that they kick their legs a lot. And those like movements come in groups. And so they're called periodic. And that's something that is also treatable. Usually, we start by trying to optimize iron stores in the body to help calm those like roommates down. Some kids have what we call rhythmic movement disorder. And so some common examples of that would be like, body rocking, or head banging. And those are really kind of self soothing behaviors that a lot of kids can do to help them actually fall asleep. And so while it's kind of a little distressing to watch, sometimes, they usually will grow out of it. If they're, you know, injury is rare. If there is concern for injury or safety, there are some things that we can do for that. But typically, the kids will grow out of it. There are a lot of other parasomnias, meaning odd behaviors that can happen during sleep. So a common thing examples would be like sleepwalking, sleep talking or sleep terrors. Typically, the younger child, you know, the two year old or something, well, you'll see them or hear them rather, maybe sit up and be very agitated and scream, you know, bloody murder and their eyes maybe open and trying to figure out what's wrong, you're trying to comfort them. But it's not working. It's just they're terrified. And you can't help that would be an example of a sleep tear. And it's usually in the first half of the night because it is happening is they're in their deepest sleep during the night. As they get older and are able to walk there that can sometimes morph into sleepwalking. And so you'll see that you'll notice them around the house or getting into the fridge or whatever, at night. And of course, you know, just making sure they're safe at night is the important thing for helping them with sleepwalking. Sleep terrors kids usually granted. Sometimes kids can have concern for seizures during sleep. And if there's a concern for that, obviously having them see a neurologist to have a formal evaluation for that is very important. So before I move on to my next portion, can let's take a little break and look at a try to answer questions again. If there are any more Unknown Speaker Jasmine, she's had her hand up for a while. See if I can unmute. Unknown Speaker Okay, um, Hi everyone, I'm Jasmine. I'm not applying parent or so a lot of blind parents and I am a blind child of a parent and my question one and I'm studying to be educated for the visually impaired so I will on another reason why I'm in here because I want to learn as much about blind children as I can and I know I have experience because I was born blind. But I want to gain more experience. So my question is, um, can children with with glaucoma have non 24 I have glaucoma like so. And I mean, I know I might have some students with commas. Well, if I see that. So is that possible? Unknown Speaker Good question. Thank you for sharing. I so anybody can have non 24 a person can have totally normal vision and have non 24. It is not common. It's it's rare, but there are. So the particular type of visual impairment, I would say, isn't the thing to focus on our eyes focus on what are we seeing clinically or, you know, in the real world with this person, and and does their history fit with that or not? And that's, so the short answer is yes. Anybody can have it, no matter what. their level of vision. Unknown Speaker Thank you. Unknown Speaker All right. Any other air? Yeah, Unknown Speaker yep. Alison, she has her hand up. Unknown Speaker Hello, can you hear me? Yeah, I can hear you. Unknown Speaker Okay, perfect. Sorry, Unknown Speaker that is my toddler in the background. Unknown Speaker So, two questions. One is a small one that you may not have the answer to. And there was a large one. First is I have two kids under age five, both Unknown Speaker vision. And Unknown Speaker question. First of all, it's Do we know is there any evidence? Unknown Speaker impact sleep? Because they're both. Unknown Speaker And the other thing is, Unknown Speaker I have bought sleep since babies no matter what kind of routine we have, or how consistent we have the night and how calming the environment. They have done it since newborns up until ages they are now which is two and four. And what causes you to fix that? Unknown Speaker Good question. Oh, boy. Oh, so the glaucoma eyedrops? I don't know the answer that I have not heard that. But, you know, I can't completely rule that out. But that's not something I've heard. The, the bigger question. So the child that can't sleep despite you're doing kind of everything with your sleep schedule, as much as you can. So if that were me, in that situation, I would then say, Okay, this is a problem. I've tried what I can, it's time to get help. And so I would start then, probably with my pediatrician, and then if they feel like referral to a sleep specialist is warranted, then then that would be the next step and, and then seeing that person, they'll get a full history and decide, you know, is a sleep study needed? Our medications needed or not needed? Are there other things that we can potentially do in the schedule? Or with the habits around sleep that we can try? So I know that's a vague answer. It's kind of a vague question. So. So the quick answer is I would go and ask for help from a pediatrician or sleep specialist, wherever you are, locally. Yeah. Okay, good question. Other questions? Unknown Speaker I'm gonna I'm gonna try to make the chat feature. So it's public, and see if that'll let you see the questions directly because there's a few that have popped up there. Unknown Speaker Okay. I've pulled it up here. So let me see here. well enough since melanopsin cells, okay. is quickly Raise your hands. I believe there are a couple of questions coming in. Okay, and I think this is the question they've already answered. So I think we're all caught up on the chat. Unknown Speaker Bottom I think there was a like the last three maybe they Huh, I know it's a speech you know, Bridget Steele and Maria. Unknown Speaker I'm not saying this. Unknown Speaker Okay. I'm one of them says, I've been told that people have different needs for sleep. Some need eight hours others are fine with six. Is it true for children? And if so, how do you determine if a child is not falling or falling to sleep simply because they don't need as much? Unknown Speaker Ah, yeah, very good question. So the amount of sleep that we need, it changes over time, depending on our age, and it's different between every one of us. So, if you think about how the person's sleep evolves from infancy to adulthood, right, we talked about how they have these little short chunks of sleep as infants, and then that tends to consolidate as a big chunk at night, that's around four to six months of life. And they'll usually have a couple naps during the day. And then gradually, those naps kind of disappear, usually around age four, or five, and then all of our sleep is at night. And some people need more sleep than others, okay? For the teenager, usually, that's around eight to 10 hours of sleep. And usually, most people will be feeling pretty good on that level. But if you think about that, boy, eight to 10 hours, that sounds like a narrow range, but it's actually a wide variance. And if you add that up over the course of time, it really adds up to quite a bit, you know. So if you add that, that's two hours variance. If you add that up over the course of the week, that's, you know, 14 hours, if I change your sleep schedule by 14 hours over the course of a week, you would feel that that is a lot of sleep. And so the range of normal is quite wide. And what is more important than that, absolutely number is how that person is functioning on that level sleep. And so usually, when I talk about, you know, sleep duration, and what's the right for the person, it's, it's like your shoe size, you know, everybody is a little bit different. And when you're at the right amount for you, you know, because it feels right. And so, sometimes what we'll do to help people find that right amount, is that we start with the wake time, and we say, okay, you know, basically what time do you have to get up for the day to get what you want to have done during the day. And then we work backwards. And we'll start with when they're actually for bedtime, when they're actually typically falling asleep. And then if they are still feeling sleepy during the day, on that amount of sleep, they would kind of gradually moving that bedtime earlier, very gradually, until they start to feel better during the day. And then once they feel not sleepy during the day, then they know, okay, that's the amount of sleep that I need, personally, in order to feel refreshed and, and sleep off my sleep debt, essentially. And when you move that bedtime back earlier, the really important thing about that is you have to do it very slowly. Because like we talked about earlier, our internal biological clock is wired did to stay up later, right, our internal biological clock is 24 and a half hours. So free, we kind of have left to our own devices will stay up later and later. And it is very hard to go to bed earlier than we are not wired to do that. So when we do go to bed earlier, we have to do it in very small increments gradually over time, I usually recommend like 15 minutes every other day earlier in order to until you get to kind of your goal bedtime. And that allows your internal clock to kind of adjust gradually over time in the less painful way. Yeah, very good question. Are there other questions? Unknown Speaker Yes, there is one from reish that asked a few questions when I try to consolidate. She's I'm 12 years old and I talked at play drum and sing and play with the walls of my bedroom. How do I stop those things? How does she stay quiet at night and try to fall asleep? Unknown Speaker So if I'm kind of interpreting the question correctly, it's some of us have a hard time kind of quieting our mind at night or, you know, we lay down we know that we're supposed to get you know this amount of sleep, or else we're gonna feel crummy the next day. And so we go to bed at the time that a reasonable hour to get that amount of sleep. But Gosh, we just can't stop our mind from kind of racing or thinking about tomorrow or kind of ruminating on things from the day or whatever kind of relaxing and just letting sleep catch you. And so that is very common. And usually for that, we look at what's going on with the sleep environment. And then what are other ways that we can kind of retrain the body in the brain to only associate the bed with sleep. So for like the typical teenager that I see who has difficulty with this all the times we'll talk about kind of the four rules for insomnia and that would be when they go to bed when you feel sleepy. Get out of bed and go do something boring if you can't fall asleep so oh you know read a book that is not that engaging or help mom fold the laundry or you know do a puzzle so I you know something that is very Engaging, that's boring for you. And then as you start to feel sleepy again, then get back into bed. Rule number three is you keep your weight down the same during the day, even if you have a bad night's sleep, and number four is you eliminate naps or you don't try to make up sleep that you're working in at night by taking naps during the day. And if you think about what we talked about in terms of how sleep works, really, these four rules are just trying to get those two forces in alignment. So that we are redistributing the sleep to night, earlier in the night when the person wants to fall asleep, rather than whatever it is that they're trying to make up that sleep that could be when they're trying to take a nap during the day, or I see a lot of teenagers who have a hard time sleeping during the week. And then they kind of crash on the weekend and sleep in very, very late to try to make up their sleep debt. And while that makes sense that they want to do that. The problem with that is if you think about our our internal clock again, it's like we just took a flight from here to Hawaii. If we do that, you know, your internal body clock is all confused, then you your body's like, Am I supposed to wake up at noon, or am I supposed to wake up at a you know, and then you basically gave your job yourself jetlag every single week, and you end up feeling crummy, during the weekend, you have a hard time falling asleep. So for the kind of teenager with insomnia, those are usually the kinds of things that we're talking about. So behavioral therapies, as well as there's some cognitive therapies are changing. They're changing the way that we think about sleep as well, that can be really helpful in people who have chronic chronic insomnia. And so a lot of times I will have a listen, take, have the help of one of my colleagues, who is a behavioral sleep specialist. So he's actually a psychologist who kind of all that he does his work on that aspect of sleep and insomnia piece and use behavioral therapies to try to help with that. Good question. Let's see how we're doing on time. What time is this talk? And is it Four? Four? Okay, so we have five? Oh, I missed that with someone. Did someone have a question? I have a question. Or maybe I'm getting feedback. Okay. Well, we'll continue on there. So for this last piece of the talk, I thought I would review what I could find about what research has been done in children who have visual impairment, what do we know about their sleep, in terms of the sleep problems that they have, and what treatments have been tried and, and researched in these children. And I'll present really everything that I can find from the last 20 years essentially, which is, unfortunately, not a bot. And I think this is a topic that we really need to kind of delve into more and do more research on. But so in the 90s here, these researchers looked at 13 kids who had visual impairment and almost all of them and sleep problems, they found that the most common problems were early morning awakenings, and daytime sleepiness. Unknown Speaker One of them also had apnea, we talked about sleep apnea. And compared to their siblings, who had almost none of them had sleep problems. So really, they seem to be related to having visual disturbance. And what these researchers found was really that the strict daily schedules were the most helpful thing that they found to help regulate and and train sleep cycles in this particular group of kids. Unknown Speaker That same year, the researchers looked at melatonin as a potential treatment for children with visual impairment who have circadian sleep disorders. So these individuals were diagnosed with non 24. Three, you touched on a little bit, and eight children were given melatonin, the doses ranged from point five to two milligrams. And these guys found that melatonin was quite effective and dramatically improved their sleep weight pattern, and all of these children and they actually also had long term follow up on these participants and found that those effects seem to be sustained over time. So Boy, that's really promising and encouraging as a result. So these guys found melatonin could be harmful. A similar study in 2000 looked at melatonin as a potential treatment for children who have visual impairment or most of them had visual impairment. And almost all of them responded well to the melatonin in terms of their sleep, on average, they increase the amount of sleep that they got per day by a little over an hour, they decrease the number of awakenings at night that were occurring, they decrease the number of nights with a deleted sleep onset. So difficulty falling asleep at the beginning of the day, really, that went from almost every night to almost no nights. And also decrease the number of nights with early morning awakenings or arousal. So again, really promising results in terms of the use of melatonin in individuals who have visual impairment and sleep problems. One question is, and something we touched on a little bit is, are there aspects, particular aspects of visual impairment that are predictive of having sleep problems. And that's one aspect that these researchers here looked at. Specifically, they looked at in individuals who had visual impairment with optic nerve disease versus not optic nerve disease. And they found that those with optic nerve disease had a higher prevalence of sleep disorders, especially increased daytime napping. And that kind of makes sense, based on what we were talking about earlier. And the important role that life perception plays in kind of resetting our clock every day. younger kids, toddlers, with visual impairment, have been found to really have a strong desire to have physical contact at sleep onset, compared to children without visual impairment. That's what these researchers from Italy found that did a very nice study. And that was kind of a descriptive study. And these toddlers and again, find a very high prevalence of sleep disturbance. But the one that they really noticed was that need for physical contact at bedtime. And so that may be something that a lot of people notice. A group of children that have visual impairment, are children with optic nerve hyperplasia. And researchers have looked at that particular group of children and also tried to discern are there things that predict them having difficulty with sleep or not. And the really, there were two things that fell out. And these children with optic nerve hypoplasia can also have hormone challenges. Sometimes, if there are differences in the hypothalamus or the pituitary gland, that helps with hormone production in the body. And so that is sometimes a aspect of the disease. And so that was actually something that was predictive of sleep challenges was having two or more hormone differences, a difference or deficiencies. Most of those children had circadian rhythm difficulties compared to those who didn't have that most did not. The other thing was if the child had developmental delay, then it was universal that they had difficulty with sleep, compared to those kids who didn't have any developmental delay. More recently, there was a review of kind of everything that was published in the literature about treatment for sleep disorders and children with visual impairment. And we've reviewed honestly most of it, which is not much out there. And basically, four Unknown Speaker treatment modalities have been looked at. One is the behavioral approach, which we already talked about in terms of our sleep schedule. Two is light therapy, which we touched on. Three is melatonin. And of all four treatments, melatonin, had the best evidence for it. And then for was other sedative medications or medications that can be given at night that make a child drowsy. And there wasn't as much evidence for any of those things. Sometimes. There are many times we're kind of doing a combination of these things depending on the individual child and what's working and what's not working for that individual child and family. But at the moment, you know, melatonin seems to be a place of emphasis Now an important piece to the puzzle here. For these children. So what are kind of my major takeaways, when I think about this topic, one is, sleep is it's important, obviously, for how we feel during the day and functioning during the day, and really depends on those two major forces in terms of when we're awake or when you're, we're asleep at any point in time. So understanding how sleep works is important for understanding how it doesn't work. sleep problems are common in kids with or without visual impairment. And but those kids with visual impairment have even greater prevalence of sleep difficulties. And that, that may be related to difficulty with in training their biological clock, or keeping that kind of on track, they may wander. And definitely, this is an area where there's very little research that has been done, and that is sorely needed. And so I will put a little plug, we are trying to get a research study actually going on this topic for families who have children with visual impairment. And hopefully, in the near future, we will have that survey, ready to go and ready to kind of roll out. And if that's something that you know, anybody listening, if you read that invitation, if that's something that interests you, or if you're able to participate, then hopefully that will help us learn more about sleeping kids with visual impairment and kind of move the this field forward a little bit and ultimately, help these kids. So excellent. I think we have a few more minutes here for any more questions or comments. I'd love to hear your comments, your thoughts about what I've talked about or any other questions as well. I still have my my, my model. Unknown Speaker Yes, Unknown Speaker I'm here. Sorry. Um, thank you so much for sharing all the information I know, as someone who's five years into my parenting journey, that information is helpful and reassuring. And I'm sure we will have follow up questions for you. But if no one else has any last minute questions that we will call it good. And thank you so much for your time. The recording will be available later at the ino pbc.org website. So if you want to go back and listen to it again or refer to it, you're welcome to find that there. Thank you all. Thanks so much stringer. Unknown Speaker Thank you guys. Unknown Speaker Thank you so much. Take care Transcribed by https://otter.ai