Greatest Hits - Sweet Dreams: Down Syndrome and Sleep, Part 2

This summer, we're revisiting some of Hina and Marla's greatest hits from the first 11 seasons of The LowDOWN. On Season 2, Episode 4 of The LowDOWN: A Down Syndrome Podcast, Dr. Rafael Pelayo gives us the lowdown on sleep issues for people with Down syndrome. (part 2 of 2)

Transcript

The purpose of this episode is to explore common health and wellbeing, strengths and challenges for people with down syndrome. The content discussed here is not meant as a substitute for direct medical care with relevant professionals. Rather, we hope to share new and little known information so that families and supporters can be well informed when accessing medical care. Your child or student's medical or educational professionals may have recommended different practices or procedures that are specific to your child or student. Do not modify or change your child's treatment or therapy plan without consulting with your care provider first. Today on the Lowdown a Down Syndrome Podcast doctor Rafael Pelayo gives us the lowdown on sleeping issues for people with down syndrome. Over to you, Marla. Hannah. Hi, I'm Marla Folden, SLP and co-host of the Lowdown podcast with my awesome colleague Hina Mahmood, who's an OT at the DSF. We're going to pick up our conversation today with Doctor Rafael Pelayo, a child neurologist and sleep psychologist. Doctor Pelayo is a clinical instructor at Stanford University in California, and we've been delighted to discuss all things sleep with him. Last episode, we discussed common sleep challenges that people with DS experience. We discuss sleep apnea, insomnia, restless legs, just to name a few. To access that episode, just look for Doctor Pelayo. Part one. Wherever you found this episode, we highly recommend listening to that part first if you get a chance. Now, today we are back with part two of our discussion. We will be talking about treatment options in this section from Cpap machines, supplements and medications, as well as a few other treatments that are coming out in the medical field. Okay, so we're back here with Doctor Rafael Pelayo and talking about sleep today, which is something that's huge in the lives of all of our families who have kids with down syndrome. And we've been getting really wonderful information from him and let's keep that going. So I want to talk about treatment for sleep troubles. Like we mentioned earlier, fifty to ninety percent of our students have obstructive sleep apnea, plus or minus other sleep issues such as restless legs or insomnias, etc.. Um, let's start with sleep apnea first. So I'm going to give you the short list of treatment options that I know of, and I would love to hear your thoughts on those. And they would be tonsil and adenoid ectomy um, Maxillary expansion. Sometimes other appliances like a mandibular protrusion device, Cpap machine, BiPAP. I think that's the range. Sometimes some supplements. What is there a sequence that we should go through and trying least invasive to most invasive. The issue is that a lot of our families are prescribed Cpap right away, and compliance is very, very low, if not impossible. So we try to look for other options. I used to sell shoes when I was in high school, and if I sold a pair of shoes that gave you blisters, I blame your feet or I blame the shoes. I blame the shoes, not your feet. People say, oh, my kid can't do it. The Cpap is probably been set incorrectly. Mhm. And there's some kind of thing. The child may have no incentive to use Cpap. They don't know if the parents are thinking, my child's future, the ability of their brain to perform and they put this pressure on themselves to use Cpap. They may not be interested in it. So we got to get the kid to understand what it's about. Sometimes it's best if the parents use Cpap themselves, because then at least the child is modeling this and you're going to see when I see a kid who's got sleep issues and snoring, I go ask the parent, hey, what about you? Oh, we want to see our kid does first because, uh, no, let's get you on Cpap first and then we'll get your kid on Cpap. Let's get you on Cpap. Let's. Then you'll have a better understanding of it. Well, the parent says, I can never do it. He goes, well, then I expect your kid to do it. Or parent says, okay, I'll give it a try. So let's get the parents sleep fixed first. Um, the Cpap has lots of different modalities to it and a lot of different masks. And I take care of a family. My, one of my among many patients that I have a wonderful family, I can't repeat the name for privacy issues, but this is a family that have adopted several children with down syndrome, and they've adopted them as little kids, and now they're adults. This is a family with adults, children with down syndrome, and they have their kids on Cpap struggle. Some took to it more than others, but the fact that kids modeled after each other, and some are really bad about it, some are really good about it, but they can see the difference how they do. So parents kids can use Cpap and also Cpap masks as particular have improved a lot. So just because somebody failed to Cpap in the past does not mean it's not going to work. Now. If the parent tells you the pressure's too high. That's nonsense. The pressure is not high at all. The Cpap machine puts out a pressure between five and twenty centimetres of water, or five and twenty five, depending on the model you use. A newborn baby's first breath is about a negative one hundred centimetres of water. Babies can inflate those wet lungs, so a baby generates a huge lot more pressure than the Cpap machine is going to put out. But the machines have the leak compensation system built into them. So if the mask is leaking is going to blow more air. So a lot of times it's not that the pressure is too high, it's that the flow of air is too high. And that's because the mask is leaking. So all conversations about Cpap begin with getting a comfortable mask. Okay. There are dozens of masks available. You got to find a mask that fits and works well. And again, it's not that you have to wear Cpap. It's that you get to wear Cpap because the alternative is a surgery. Right. You can put it, you can do it. You can do a tracheostomy in any person to correct the obstructive sleep apnea. But then the kid can't go swimming anymore. It can get infection. So that's not what we want and that's not what we're going to do. But Cpap came into play historically as a replacement for Tracheostomies and that was a treatment. So getting to Cpap is a great tool. And I know and I know it's still you can't sugarcoat the fact that it's an air compressor attached to a hose over mask on your face. But when we look back on the history of our field, how sleep disorders have been treated. We're going to say that this area now is the golden era of Cpap. It's never been better. The machines are self-adjusting. The machines are built for travel. The machines give you instant feedback on how you're doing in the morning. You can do breath by breath adjustments to your pressure. So if the compliance or adherence is poor, I always think about what I said about the shoes. It's probably not set right. Mhm. If you tell me, if I tell you, tell me you can't read. And I say you need glasses. You put on the glasses and you still can't read. Maybe you don't know how to read. Or maybe it's your own prescription. Mhm. But but but the Cpap should. If you really have obstructive sleep apnea, the Cpap should work. Okay. Whether you want to use it or not is a separate issue. Yeah. So so the efficacy is first if it does not. And one of the things parents should know. How do I know if it's really working? Simple. If you have obstructive sleep apnea you snore for the most part. You have Cpap on. You should have zero snoring, not not less snoring. Zero snoring. If you snore even a little bit on the Cpap, it's not set right. It should be completely gone. Because the Cpap is supposed to make you sleep like you do, and breathe like you do when you're awake. So if any of the kids out there have tried Cpap and they snore with Cpap on, something's wrong setting off. Yeah. What about some of the other things that we often see with our kids, which are indicative of their sleep apnea, which is things like very strange sleeping positions. So sleeping totally upright or with the fully arched neck or I mean, we see all kinds of wacky things halfway off a bed, all kinds of stuff. Should that also be fully, fully remedied if the Cpap is working right? So the reason that kids get into weird adults and kids, especially kids, get into weird positions, is they're trying to open up their airway. So the kids are arching their back and often have their butts in the air. Yep. All they're doing is they're kind of doing CPR on themselves to open their airway. When you learn how CPR, you learn to arch the head back or move the jaw forward. That's what they're doing. And when you're on your back, the tongue is sliding out of position, blocking the airway. So you'll see better, more propped up, even in a chair. Mhm. So that's what they're doing. People with sleep apnea tend to be very restless sleepers. People say things to me like, oh, well, I can't use Cpap because I can't sleep on my back. Yeah. The reason you can't sleep on your back is because you have sleep apnea and the tongue slides backwards. But if I get you in the right pressure, the right position, the tongue will move forward, then there won't be an issue. Yeah. Yeah. Have you so so that so so that that will correct itself once you get into a position. And on Cpap people sleep better on their back. Having said that, new Cpap masks have been designed to let them sleep on their side. So so even in face down, even with face down. So it should not be this attitude that it won't work. Yeah. Did you guys talk about dual, um, syndromes that a child, especially young adult autistic spectrum disorder, and you're never going to get them to use Cpap, the tactile sensitive and his therapist said, my husband can use Cpap. He can to this kid can to this young young man can do. And sure enough, we just made it. It's not an option. You're going to use this. It's not a punishment. It's simply a it's just a matter of fact. That's how we sleep. We use a pillow, we use a mattress and we use a Cpap. It's just very flat out. It's not a negotiable thing. It's not like if you're a good boy, you get to do this or, you know, or, um, you really did well last night. So we're going to give you a break and not let you use your Cpap. The Cpap should not be a reward or punishment. It's simply a matter of fact thing that you are using this thing. And I think one of the reasons why our parents sometimes are hesitant to continue with, you know, encouraging their kids to wear it is a story that I hear often as an OT is like, oh, they'll put it on, they'll think they'll adhere to it, they'll, you know, for like an hour and then an hour into their sleep, they'll parents could go to check on them and it's off. So it's this constant like checking in throughout the night. Is it on? Is it on? So I think that's one thing that I hear from our families is like, we're happy to do it. And he's happy to put it on, but he'll take it off an hour later and then have to keep checking to make sure it's on or sleep with them to make sure it's on. Right. Well, what happens is the pressure may be wrong. Yeah. Sleep apnea. You can't breathe. And if you're trying to, if your throat is blocked and you're trying to breathe through a tube in the tube and the sleep apnea is not well controlled, you're going to take the mask off. Yeah. So a couple of things about that. First, make sure the pressures are adequate. As I said earlier, that the person are too high, but they still have to be adequate. When you have sleep apnea, you're choking and you're waking up. So if the pressure is too low, you're going to you're going to wake up also. So you got you might need to increase the pressure. The nice thing about modern Cpap machines is they deliver pressure on a breath by breath basis. The computer algorithm was to give you little pressure as possible. but all these kids should not be on plain Cpap machines. We shouldn't even be talking about the word Cpap. We should be talking about Apap, automatic positive airway pressure devices. So if your kid is getting a fixed pressure machine, I don't know what's happening up up there, but I still to this day, every now and then I see people with fixed pressure machines, old fashioned machines. Well, that machine is not going to work well because the pressure you need may be different when you're on your back, on your side. If you're dreaming, you're not dreaming. If you gain five pounds, if you take a medication one night, the pressure demands the the dynamic, flexible airway is going to fluctuate during the night. So you need a machine that fluctuates with you. So modern Cpap machines adjust on a breath by breath basis. Okay, so I always think if Cpap is not working, what are the settings? It could be lack of humidification. It could be the mask is wrong. They might need a little bit higher pressure. Yeah. And you can set a wide range. Some of the machines, what they're going to do is they're going to test if the mask is off or not, and they're going to hit the highest point and shoot up to the highest point first and then shut off. So maybe that ceiling is too high and that sudden surge of pressure is disturbing them. Yeah, that makes sense. If the kid was able, if they did a Cpap titration, a lot of these kids will have automatic Cpap machines, the ones that Cpap. But if they spend it in the sleep lab and they're able to sleep with Cpap in the lab, why can't they do it at home? We play a game of telephone where the doctor writes a prescription and another company delivers the equipment. Somebody else puts it on the child, and then they tell you it's working or not working. You got to circle back, and I want to see my patient with their machine together. Yeah. Even now, during social distancing, it's actually been unique that I can actually do. So do my video calls, Zoom. I'm seeing people in their bedrooms. Mhm. I want to see the machine in you together. Yeah. And I want to see you put it on. I've seen people put the masks on upside down many, many times. Mhm. They don't they just don't have it on. Right. They just. Yeah. Right. Uh, And it angles wrong and they don't realize that, or they haven't figured it out, or the vendor sold them something different than what you prescribed. That happens a lot too. Um, they have the wrong host. They're supposed to have a heated hose. They put a simple cheaper hose and then they get water condensation and gurgling sounds. That'll bother them. They, your child may have allergies and they put in a regular filter instead of an allergy filter. Most of these machines have the option of a regular filter or an allergy filter. You may have the wrong filter inside. Just gotta check the little things that we can do. Yeah, that's really good. So it should not be this. We got to do you on Cpap because we don't have any other choice. Yeah. Uh, but we know you're going to get surgery anyway, and then they kind of doomed to fail. Yeah. As far as the treatment options that Marla mentioned before, one of them that you did mention is one of the newer ones is the idea of putting in a pacemaker for the tongue. Have you come across this yet? No. We're back here in Canada. Tell us more. It's available nationwide. It's been around for a while. The tongue. The biggest thing taking up space in our throats is our tongues. Yeah, and Down's kids have a particularly prominent tongue. A lot of times. So but that's true for all of us, that our tongues are the biggest things in our throats. So they've come up with this idea of using the tongue muscles called the glossus muscle, and the nerve underneath the tongue that goes on these tongues called the hypoglossal. So a hype is a nerve called the hypoglossal nerve. The nerve that goes under the tongue, the hypoglossal nerve can be connected to a pacemaker. And that pacemaker moves the tongue forward when you're sleeping. To get it out of the way, push it forward so it doesn't slide backwards. So you look your listeners can look up hypoglossal nerve stimulators. Um, very interesting. In the US, there's only one brand right now. Um, but there's going to be more companies, I'm sure down the road. Um the US device is called inspire and it's FDA approved to use in adults with sleep apnea, but they're starting to do it also in adults with Down's. And they also can do it with younger kids with Down's who don't tolerate Cpap. And the idea behind this device is to move the tongue out of the way. It's a real pacemaker, so it's a battery powered pack underneath the skin. Clavicle. Yeah. Right in that area. Right. Thank you. In the upper chest on the right side, not the left, but on the right side. And then the nerve connects to that. It gets connected to the tongue and it's. And there's another sensor for your ribs and a sense of how you're breathing and a synchronize your breathing with the tongue out of the way, you turn it on. When you go to sleep, you turn it off when you wake up in the morning. So there's a remote control because you don't need to have your tongue stimulated when you're awake and you don't want to lose the remote control. So it's a bulky remote control. But the idea behind this is once it's on, you don't have to worry about it. Just turn it on and turn it off. And you don't have this issue trying to find a mask that will work or not. So that's something that is there. And it's, I think, promising for parents to consider any adults with you? Adults with down syndrome also can get this done with the assumption that the predominant obstruction is at the base of the tongue, right? You can have obstruction also at your nose. You have allergies, large turbinates, but you can have a combination treatment where the surgeon you can get to the nose very easily. Right? It's outside the right. The nose is an easier target so they can operate on the nose. The tongue is tricky to work with because the tongue is a much more complex organ. But you can do surgery on the nose and then put in the pacemaker for the tongue. And then you can have a hybrid combination to open up the airway. And I think that may be a bright future for that. And our population of people with down syndrome. Mhm. Have you seen success with things like an REM, like a rapid maxillary expansion, which is an orthodontic treatment to remedy the midface hypoplasia. But usually it does result sort of secondarily in more space up through the soft palate. Is that something that's done there. Yeah, yeah. Um, rapid maxillary expansion is orthodontics. Do you put in a spacer in the roof of the mouth called the butterfly. It's going to give you a whiter smile. Mhm. That's predominantly something for somebody who has a narrow face a high arched palate. The floor of the nose is a roof of the mouth. And if you can make that wider, you don't need inches and millimeters. You just have to make that wider. It's expensive to do that. Orthodontics is not usually covered. So it's not an expense that a lot of people can do on their own. But you have to every day kind of crank up that wheel. Yeah. And then once you make the space, now you have to train the tongue muscle to move up there. So some people will do something called myofunctional therapy therapy, where they train the person to do it. So those things can help. But if the tongue slides backwards and you may not be able to get enough space back there. Okay. But yes, those are those are options. The American Academy of Pediatrics does not recommend that as a first line treatment. They usually say tonsils and adenoids first, Cpap second, optimize allergy treatments as much as possible. But then you have these other things like me that may be available. Fantastic. All right. I know you can talk about drugs. Yeah. So I had some. So we're kind of talking about some of the devices. So I wanted to move on to talking a little bit about medication and supplement options. So I wanted to kind of start off with talking a little bit about some of the medications that some of our kiddos have trialed. So what are your thoughts on or what is the evidence? Been using drugs such as clonidine or zolpidem or I think what's something that you call hypnotics? In some of your other presentations? I've heard you refer to them as that. Sure. Um, there are no. And I know we're talking to perhaps a more Canadian audience, but, um, in the US, there are no FDA approved medications to treat insomnia in children. Mhm. So anything we're doing is going to be off label. Mhm. Mhm. Because insomnia is a behavioral condition to some extent. It's very sensitive to placebo. So sometimes when you take when you give a child a medication, you calm the parent down. Parent thinks, okay, we took something. It's not saying they don't work, but I'm saying it's not as simple as sedating somebody. Also, it's important to understand that all humans have a heightened alertness in the evening. So if I normally fall asleep at midnight and the parents say, I want you to fall asleep at ten o'clock at night, you're really wide awake at eleven o'clock at night. And if I decide that you go to bed, you fall asleep on your own at midnight. I'm gonna give you a sleeping pill at ten o'clock at night. Hypnotic sleep pills. Same concept. If I give somebody a sleeping pill at ten o'clock at night, the pills. What are going to do is if you are, as an adult, in the mood to sleep, You take the pill. You look forward to sleeping because you know it's going to happen. If I impose upon you, if you, as an adult, I give you a sleeping pill. You did not know what's going to happen. You're going to start to feel weird. You're going to start to see things a little bit distorted. You're going to panic and freak out because somebody slipped you something and you're gonna transition from wake to sleep. So what will happen? A lot of times parents will tell you is when I gave my kids something for sleep, it could have been as simple as over-the-counter diphenhydramine Benadryl. My kid freaked out. He had a reaction to it. That's called a paradoxical reaction. It's not. There's anything special about your child and that medication. It's that you gave it at the wrong time. And by giving it at the wrong time, you freaked out your kid because they did not know what to expect and did not know what was going to happen. And in order for you to hallucinate, you have to have the lights on. Usually somebody takes a sleeping pill, they turn off the lights and they go to sleep. If you give your kid something to sleep and they leave the lights on and you're going to have story time and waiting for it to kick in. The kids are going to flip out at some point because they're going to like not be able to understand. They're going to get grouchy. They're going to hallucinate. When you transition from wake to sleep, it's a phenomenon called hypnagogic hallucinations. So you start to see things. You even hear things, and they may be scared. And I've seen this happen many times when they offer kids sedation for procedures. The tendency is to underdose them because you're scared that they're going to, you know how they're going to react, and you give the kid too little. If you give me a cocktail, I might think I'm charming. You give me five cocktails, I'll be asleep. Right. So a little bit of, of, of something may disinhibit you and I may misbehave, right? I may do something right. But you're going to think differently. That happens with the kids, right? They're told to behave, but you give them something that disinhibits them start acting a little bit goofy. And what happened is you give them too little a dose. You got to sometimes go higher. Most of these things are safe. Clonidine is not been recommended as something for sleep. Uh, it's a blood pressure medication, but it's often used in psychiatry. It kind of dampens it lowers the sympathetic tone. It lowers that hyper arousal. And they'll be working that way. But if you've never addressed the core reason somebody's not sleeping, they're scared of the dark. They don't want to be left alone. Their bedtime is too early. Whatever you give them eventually will stop working. Mhm. If you have elevated cholesterol and I say, listen, you've got elevated cholesterol, I'm gonna give you this statin. But I never discussed with you your eating habits, never discussed with your family history, what's driving the elevated cholesterol? I'll give you the statin. Yes, your cholesterol will improve. But then you say, oh, I'm dependent on statin because without the statin, my cholesterol won't go down. So you're addicted to statins. I'm gonna take them away. Now your statin shoots up. Yeah. That's what we do with the hypnotics. We don't address the reason the kid is not sleeping. We just try to sedate them. And then we complain that we sedated them and they're reacting a certain way. You got to use these medications as tools to help. maybe take the edge off as you work in the behavioral changes. We are going to have a later bedtime, so sometimes the way to use a medication for sleep in a child is to give them a later bedtime. If that doesn't make any sense, I'm trying to get them to go to sleep earlier. So it's not really we're trying to get them to sleep consistently and look forward to sleeping. So giving the medication they make, give them a later bedtime at the same time may make more sense. Take the pill just before you turn off the lights. Right. We're not. There's a difference between sleeping and sedation. Lots of things are sedating. I just mentioned alcohol, right? If you drink enough alcohol, you're going to pass out. But you don't wake up feeling refreshed the next day. You feel like you may feel horrible. A lot of things are sedating. It does not mean you're getting a good night's sleep. Mhm. Yeah, that's super helpful. And but on the other side, what about natural supplements? Because I know melatonin is generally the first go to for parents to trial. And many that have come to me about sleep issues with their kids. They're like, yeah, we've tried the melatonin. It doesn't work. But what I found fascinating in a presentation of yours that I viewed, um, a few weeks ago was I would love for you to explain the melatonin that's available in the US and Canada over the counter versus, um, I guess comparing it to Europe and the variability in, in, in the lots and the doses, because I think that's fascinating. And then if you can also address a little bit more about the timing of giving these medications, um, and the dosage, that'd be great. Sure. So melatonin is a hormone made by the pineal gland that signals the brain that night is approaching. We know that morning is approaching because light comes up. I don't know, but you also need a signal to, you know, the night is coming. So the the melatonin secretion signals that night is approaching because animals must predict sun up to sun down. And you need to be able to predict sun up to sun down. And the planet is changing. It's rotating. So the melatonin simply tells you night's are approaching and some animals. Melatonin elevation means get busy. For nocturnal animals, melatonin does not make them sleepy at all. It makes them does the opposite. It says night's coming. So melatonin should not be a sedating substance per se. It's simply clueing you into nights approaching. That's at the physiological dosages at the big dosages, three, ten, twelve milligrams of melatonin. It's actually does have a mild sleep promoting effect, more for the sleep onset, not for staying asleep. So if your parent tells you you have a kid who can't, who wakes up a lot at night, it's usually not going to be melatonin is going to help. Compared to placebo, yeah, any individual thing may do so. So for parents, melatonin works for me. Awesome. There's no need to argue. Um, but if another parent says it doesn't work for me, it, it could be that one is more of a placebo, one is more common to the other. But for sleep onset difficulty, melatonin may be useful at big dosages. The problem is that melatonin is considered a food supplement in the US and in Canada, and the quality of it is not the same as pharmaceutical quality. So there was a Canadian study. I guess it's been three years now. Um, it's been like two to maybe two to three years ago, a study came out of Canada where they found that the fluctuation was on the bottle to what was in the, on the label fluctuated over four hundred percent. And it was also not just us. It was also fluctuating wildly within the same brand. It wasn't just like a one brand is better than another brand. There was no one brand that had it that dialed in. Right. Um, and especially if it was coming in a gummy formulation, it was particularly bad. And also these over-the-counter agents, what they want to do is give them long shelf lives. If I'm going to sell something in a store to have a long shelf life and the melatonin gets degraded eventually to serotonin. So and this one study came out of Canada, twenty five percent of the samples had serotonin in them also, along with melatonin, which is not what you wanted to give the kid. Um, yeah. In other, in other parts of the world, melatonin is actually a controlled substance. Yeah. In Europe, you need it's a prescription item. So I know, um, Doctor Collin Shapiro in Toronto, you may know the Shapiro, a brilliant sleep scientist, works with children. Uh, what he's told me if I, if I remember correctly, is that he actually gets his melatonin sent over from Europe. Mhm. Uh, when he, when he uses it in the pharmaceutical. So sometimes when you read the clinical trials or the research trials about melatonin, they're using pharmaceutical grade melatonin. But over the counter may be something very different than what you're getting. Mhm. Um, in the US, there's one formulation that at least on the label, they say that it's made to pharmaceutical grade and they and they advertise that sleep conferences. So there is at least one brand name product out there that is said to be, um, pharmaceutical grade. At least that's what they put in their literature. I don't know if it's true or not. I don't know if you want to say brands, but there's one that. So I try to use the same brand every time just because they saying it's made pharmaceutical, but I don't know if it's true or not. Um interesting. So that's what you want to look for on that on that front. But it should not be a thing. Now sometimes other things about medication is sometimes medications work better on empty stomach and they may not be absorbed correctly. So for example zolpidem you mentioned um works better on an empty stomach. So sometimes you have wildly fluctuating results. And that's because the kid has gotten it with food some nights and not others. Yeah. Zolpidem in particular. And a lot of these medications that work through the Gaba system have a wide therapeutic window. And that means that the difference between the dose that will work and the dose to kill you overdose. Yeah. Right. Is very wide. It's a wide therapeutic window. Some medications have narrow windows like lithium, right. So they have to like lithium levels because a little bit may work for some conditions, but more of it can really hurt you. Yeah. Um, so And also with epilepsy medications. They'll check levels because they check for toxicity. Other medications have wide windows between what's safe and what's harmful. And zolpidem is one of these medications as is a white window. Valium also diazepam. They have wide windows, which is why they sometimes used because they are viewed as safer to some degree. Doesn't mean you can't hurt yourself. A kid with any of these medications could sleepwalk, get up and get injured, fall down wabble get get hurt. So as we say, it's not chicken soup, but within the spectrum of medications, there's some pros and cons to them. Some have advantages. One is one of the wide therapeutic window. So with a medication like zolpidem in that class of medications, um I'll try to aim for higher dose parents say oh no, no, I want to give them as little as possible. And that really is implying is this, this lack of trust and the substance. Right. So lack of trust. Um, I want to give them as little as possible. Of course, you want to give them as little as possible, but I'd rather shoot for efficacy first. And if I get side effects, then I back down. But if I go in the opposite direction, I'm worried. You know the exception to that. What I'm saying is, the first time you take a go for a low dose, you don't have an allergy. But if you're not allergic to the substance, go high because the whole point is to get you to sleep first and back down as needed. Yeah. Because otherwise you're going to get into this situation where the children may have this paradoxical reaction because you give them too low a dose and they become disinhibited and they're flipping out and they're freaking out. And now parents think, oh, I'm not going to give him this thing. He went wild on it. Agitated. Yeah yeah, yeah. Is there where does Risperdone fall in that lineup? Because risperidone is often prescribed off label here for. Yeah, in a lot of places it's it's an anti-psychotic. Yeah. Um, and your child is not psychotic, so why give an anti-psychotic medication? Some people say, oh, I don't want to use zolpidem because it's um, or zaleplon because it's addicting. Yeah. Yeah. It's addicting, but your kid's not going to rob a candy store to get zolpidem. It's not going to happen. It's habit forming. And our goal, all our kids, all our all our patients, not just the kids, is to fall asleep easily through the night, wake up refreshed. So we're only using the medication as a bridge to get them where they need to be. So I'd rather use a higher dose of a proper sleeping pill like zolpidem, then go off label. With a psychotic. Because all I'm doing is sedating the kid. A lot of them out there that are sedating the child. Yeah, it's knocking them out. But that's not the point. It's more and more to do some more. Some more normal sleep for them. Mhm. Um, we're going to slowly start wrapping up. Oh, one thing I want to make of this, please. Yeah. Yeah. Yes, absolutely. Something something happens with medication that says I gave him the pill and he was really groggy the whole day. The insomnia, the insomnia. Something's protective of the sleep apnea. So if you have a child with untreated or mild subtherapeutic sleep apnea, and you make them sleep longer, they're going to go more hours without breathing. Yeah. So what you're really seeing is not the pill sedating them. It's that you really made the sleep apnea. You made them sleep longer. So they went more hours without, without breathing and other headaches. So you really, you really, really want to get the, um, the sleep apnea well controlled, but you got to be able to do this in parallel. Get, get the sedation or the sleeping medication. It lined up with the, with the sleep apnea treatment. Yeah. You just knock them out. They're going to sleep worse because they have more apnea. Mhm. That's a very good point. Do you need to adjust things like the release time on a medication like that. Or is it usually like what time of day to give the medication. The different medications you can use. I mean, yeah, there are slow release. This all depends what you're trying to target. So somebody with sleep onset insomnia different than somebody with sleep maintenance to some degree. Okay. For for me, picking medications, some medications are good for falling asleep and staying asleep. There are medications that are more on the melatonin side that are more for falling asleep. Um, um, I just remember that the brand name, but I'm going to get it wrong. Um. Uh, rozerem is more of a sleep onset medication. There are medications that do both Belsomra. Um, and I'm blocking and I apologize because I'm thinking of brand name and I should be using generic name. It's just not coming to my mind at this moment. Um, but I like medications sometimes when there's only trouble staying asleep. What happens is we get the second wind at night, um, in the second half of the night because histamine levels are going up. So sometimes we'll target a medication that's an antihistamine in the second half of the night, which by the way, how triazolam seems to work. So there's a drug called doxepin. And in the US there's a branded form of it called Silenor. And that really is suppressing the histamine release in the second half of the night so you can. So you don't need a controlled, controlled release version of it. It's just going to suppress the histamine. Histamine is an alerting naturally made, um, neuro neurotransmitter and the brain, you know, if you go to the bakery, you know, when you buy the bread, the baker had to get there before, before the bakery opened to make the bread. There are there's this stuff going on in the background before you wake up anticipating waking up. And that can pop you awake. So you can dampen those signals to get you to sleep longer. So if it's sleep maintenance, I might switch more to a doxepin like medication and then, uh, somebody with sleep onset, I may do melatonin preparation. And if they have a little bit of both, I could do a combination. I could do, I could do a low dose of zolpidem or zaleplon or any of these Gaba medications, because that's more of a, of a sleep switch kind of thing. Use those in the beginning for sleep onset, but that'll wear off so that they're not sedated in the morning. But then also combine that with something like silenor. Um, doxepin to get them to stay asleep longer than the night so you can tweak things. But again, the overall thing is to get a sense of why can't sleep in the first place. Yeah. Right. That's the real issue. Do they feel safe or are they choking? Right. Yeah. And I'm very happy that you pointed that out again, is that it is not just a one or two type deal. Like it has to be looked at. The whole overall picture has to be addressed of why the sleep issue is happening from a behavioral perspective, from a medication and kind of working on all, all things have to all cylinders have to kind of be firing at once to solve the problem. So, um, and just to kind of wrap up like the treatment part of our podcast, and then we're almost done with our time with you. I just, apart from the devices and the medications, are there any lifestyle changes you feel like would help with, with situations with sleep difficulties? Like, I know you had mentioned exercise earlier. Um, are there any things you could recommend that parents kind of look into. I like, I like having a reason to get up in the morning. Mhm. So I like sometimes I'll ask a child or an adult, what would you like to do? What do you like? You know, what do you really like to do? Yeah. And how about you? How about you do that first thing in the morning? Yeah. And then you have a reason to get out of bed. Waking up is, um, waking up is biological. Getting out of bed is volitional. Yeah. So if there was one thing that you really like to do is play video games, play first thing in the morning as much as you like, but if you wake up later, it's just not available. Yeah. If I wake up early, I can. Some parents don't want the kids getting up too early, but some of them want the kids getting up early. But I really want you to. To have a reason to get out of bed. Mhm. So you enjoy, right? As an adult, ask any person about their sleep. You get the same answer every time. Why? Um, yeah. Somebody. Why did you get out of bed when you got out of bed? Both of you. If I ask one of you. No no no no no. Why did you get out of bed? You have the same answers as what I had to. I had all you all could have slept a little bit longer. Yeah, you could have to get to work here. I had to, right. So that's, that's the issue, right. What if what if there's no I have to with somebody. Yeah. Right. That's that's the thing. So find out as far as lifestyle what is it looking forward to. Yeah. And I think that really plays that plays really well with our population too. Because our kiddos with down syndrome have very low levels of intrinsic motivation as a, as a, as a thing already. So having that extrinsic motivation in any aspect of their life is super important. And why shouldn't it translate into sleep as well? So I think that's a really good point. Like, hey, if you go to sleep, have a good night's sleep, stay in your bed, then in the morning you can do that one thing that you really love to do. So they have an incentive. You get to do extra, you can do more. You get to do an extra. Yeah, yeah. Or you wake up. The more you, the faster you out of bed, the more you can do it. Yeah, yeah. Very true. Great. Um, doctor, before we end our time here, as Marla and I mentioned, we could talk to you for hours more. But I know we want to be respectful of your time, too. In your biography, Marla had mentioned that you're on the board for, um. I'm sorry, Marla, I think I totally took over your question. That's fine. That's totally fine. Sorry. Um, you're on the board of the Start School Later program. I was just wondering if you could kind of briefly give us an idea of what that initiative is about. Super interesting. Sure. Um. We believe that what the data better said is that teenagers are not getting enough sleep. If you interact with teenagers at any level, odds are you're not they're not getting enough sleep. The centers for Disease Control, um, data that I remember is that seventy five percent of teenage girls are getting less than the sleep that they need. So whenever you're dealing with any, um, teenagers, you should know that you're dealing likely with a, with a group that is sleep deprived and sleep deprived. People, as I mentioned earlier, tend to be grumpy and irritable and inattentive. Car accidents are the most common cause of death in this age group. And if you ask them, why aren't they getting enough sleep? They'll often say, well, it's school, the school, the homework. Mhm. And what happened was about twenty five years ago in Minnesota, uh, somebody had the idea, why don't we just start school later? What would happen? The cynics and I was one of them thought, well, just kids are just going to stay up later. Turned out that if you shifted the schools time by one hour, the kids got an extra forty minutes of sleep every night on average. So yeah, they set up a little bit later, but overall they got more sleep and more importantly, the mood improved. There was less car accidents. People were healthier, people were less grumpy. You could. The teachers said there's a palpable difference now. The kids were behaving because they seem to be getting more sleep. So from there, that experiment was replicated. And then in other school districts, and they found that changing school start time, because the schools are a center of many communities, has a domino effect and many different situations as a ripple effect. But overall, when you get the kids more sleep, just start school later. The kids did better. So the national organization was funded, not funded, formed. Better yet, the National was formed by all volunteers simply trying to get kids to go to bed later. The American Academy of Pediatrics in twenty fourteen put out a position paper specifically calling for all schools, United States, to start no earlier than eight thirty in the morning. But there is no national rules for when school starts. It's all regional, state, state by state, district by district. Um, and it's sometimes negotiated into the teachers contracts. Mhm. So the movement's been going on and enough data has accumulated that the California became the first state in the nation to have a statewide law that passed last October twenty nineteen, that all high school kids in the public schools should start no earlier than nine thirty. Now, kids can go to school earlier. Let's say there's there's a there's an elective or something. They can do it. But the state could not mandate a child to go to bed before then. And when some of the things that really clinched it and helped drive this was mental health data. Lack of sleep makes people impulsive. And suicide is a common cause of death, unfortunately, in this age group. And the fear is that a lot of these kids are not depressed. They're just being impulsive. And lack of sleep is a factor in this. So the idea is that by providing them with more opportunity to sleep, you have less car accidents, better mental health. And the data the analysis of the Rand Corporation has done has shown this already. So that was my involvement. They invited me to participate in this activity of trying to provide healthier sleep to adolescents by giving them more time in bed. That's what that's about. I think all of our families can use that too. Yeah. Impulsivity and poor mood are some things that we see. It's a real thing. It's actually been measured in adolescents. Um, when you don't get enough sleep, the brain goes into a mode of behaving like something is wrong. Because why wouldn't you be sleeping? Because something is wrong. And if something is wrong, we go into a primitive mode of thinking we must take chances. So risk taking behavior increases with lack of sleep, both in children and adults. People gamble. The longer they stay awake, the bigger, the bigger risk they'll take. So they've shown this with the teenagers that when they are sleep deprived on a driver simulator, they actually think they're driving better. When they're when they're driving, when they're making more mistakes, which is a horrible combination. You think you're getting more sleep and when you get don't get enough sleep. The brain releases stress hormones. So you get a little euphoric from from these stress hormones. So you all of a sudden are feeling good when in fact, you're behaving worse. Mhm. Fascinating. Thank you so much. So yeah, so, so sleep can definitely help people have better lives. And nobody's arguing against the advantages of getting healthier sleep. Yeah. Absolutely not. We appreciate you joining us today so incredibly much. This is information that we have needed to share with our community for a really long time, and I'm very looking forward to this podcast episode being available for everyone. And we will absolutely put links to your new book on the website page. Um, it's been a pleasure. Thank you so much. Thank you guys. Thank you. Appreciate it so much, doctor. We really appreciate it. Bye bye. Next week on the lowdown a Down Syndrome podcast. Like I said we were transferring between obese. So our amnio and everything after that initial conversation was handled by our Vancouver doctor. And it was just night and day. Um, it was a completely different conversation. It was full of light. It was full of positivity. It was, you know, she cried in the office with me. Um, she was incredibly supportive. She, um, told us all the things of life with down syndrome, what it could be. And, um, you know, really made sure that we had a good support system in place and, um, really followed through with that as well. You know, um, every subsequent visit with her, she was asking and making sure, you know, have you reached out to another family? Do you need connections? Um, and it was just really a very blatantly obvious, the difference between one delivery of a diagnosis and the next. And what a difference that could make. The low down the down syndrome podcast is a production of downstream research foundation or more at D s o f dot org and join the conversation at D s o f Canada on Twitter, Facebook and Instagram. The low down is hosted by Marla Holden and Hannah Mahmoud and is produced by Glenn Hughes. The low down theme music and Just Do was written and recorded by Rick Scott.