Jen (00:06):
Welcome to the Cerebral Palsy Health Podcast. We dive deep into health topics that impact people with cerebral palsy such as stem cells, genetics, neuroplasticity, exercise and fitness, nutrition, accessibility issues that could be confusing are controversial, and those that offer hope but might not live up to the hype. I'm your host, Jen Lyman. Join me in conversations with leading experts as we separate fact from fiction tackle tough to understand topics and try to shed light on how best to maximize and optimize health participation and quality of life for those with cerebral palsy.
Jen (00:44):
Welcome to Cerebral Palsy Health with Jen Lyman. I am here today with Dr. Golda Milo Manson and I'm thrilled to have her on the show. Today we're talking about sleep, and as anybody who has listened to my podcast knows we have struggled with this as a family with my son and I know a lot of other families with children and adults with cerebral palsy struggle with sleep issues. I'm really excited to have her on the show today. She's truly an expert in sleep issues for cerebral palsy and welcome Golda. If you don't mind, I'm going to call you Golda through this interview and I'm going to read your bio really quickly. I just want to tell the audience that I shortened it big time because it's a very impressive bio. Dr. Golda Milo Manson is the Vice President of Medicine and Academic Affairs at Holland Bloorview Kids Rehabilitation Hospital, a role she's held for 20 years. She's also an associate professor in the Department of Pediatrics at the University of Toronto. Dr. Milo Manson has worked in pediatric rehabilitation for more than 20 years, largely with children and youth with physical disabilities as well as complex sleep disorders. She has been a member of the American Academy of Cerebral Palsy and Developmental Medicine for most of her academic career and is currently serving on the executive board of directors. Welcome. Thank you.
Dr. Milo-Manson (02:10):
Thank you, Jennifer.
Jen (02:12):
I'm thrilled to have you on the show. I will tell the audience this, I had the pleasure of seeing you present to physicians on this topic a couple of years ago, and then I had the honor of asking you to present on this at the last academy meeting, and I really feel like it's a resource so many families can really benefit from and I'm so grateful to have you here today. I would love to know why you got into developmental pediatrics just to get to know you a little bit more.
Dr. Milo-Manson (02:43):
I'm happy to answer that question. Before my developmental pediatric career, I was a occupational therapist and I worked in peds originally in Philadelphia and then in Hamilton, and I started thinking about wanting to go back to school, do a little bit more, started exploring PhD programs and thought I really love treating the kids and families, and then medical school seemed like a great option and I ended up doing pediatrics and then my specialty in developmental pediatrics, which in Canada is a two year fellowship or subspecialty training program, and I have loved every single minute that I have been a developmental pediatrician, but consider myself to have good occupational therapy route.
Jen (03:44):
I love that. And what a great combination, and I'm sure your patients truly embrace that as well, and to really know that when you're looking at things, you're looking at things from a functional perspective as well, so you can really bridge the two together. I love that. And I'm here in Philadelphia now, and so this is kind of fun that you started your career here. How neat. So why don't we dive right into it and the very first question I have is why is sleep so important?
Dr. Milo-Manson (04:13):
Well, I know personally when I don't sleep well, I'm a little grumpy and I think that's the same for parents, adults, but we know it's especially true for our kids. But sleep is so important for restorative function. It allows us to do our best, whatever it is, whether it's work, whether it's school, whether it's play for our children, and there's even other pediatric reasons besides optimal function, but it's felt to have a role in fighting infection. It's helps boost our immune system, helps our brain development, especially very early on in an infant's life and early toddler life and it helps a family function. We know that when our kids aren't sleeping well, most of the time our parents are not sleeping well or the siblings and or of the siblings are not sleeping well. So it truly impacts so many areas of our daily life and it's so important.
Jen (05:16):
Yeah, and I certainly can attest to that as you know, we've really struggled with this and I definitely know that when my son's not sleeping well, I'm not sleeping well. None of us are functioning well. And it seems like in cerebral palsy it's a big issue. So many people I know have a multitude of issues related to sleep. I'm sure we could go on all day talking about this, but I guess the next thing I'd be interested in knowing is why, what are the different types of sleep disturbances that we see, especially in kids with CP and young adults are through the age range?
Dr. Milo-Manson (05:54):
Absolutely. Good question. Actually, Jennifer. So one of the most common ones is difficulty falling asleep. Some people refer to that as insomnia. So I would say that is probably one of the most common sleep problems our kids with CP have. But we also know that night awake cans are very important in this population or very common, and it does vary a bit according to the G-M-F-C-S level. So we know that our children, for instance, who are G-M-F-C-S levels four and five have harder time perhaps moving while they're in bed rolling to their side. I know that I start off in one position when I fall asleep, as do most individuals. And throughout the night we change position and our children who have greater mobility challenges have greater difficulty doing those things.
Jen (06:53):
Yeah, and we've certain, again, this is why I have you here. I feel like this is one that I certainly can relate to as well and that repositioning through the night, but then again, that's also goes back to the why sleep issues are so important or why sleep is so important. If the parents having to get up to reposition through the night, then you've got that double-edged issue where the parents maybe not be able to fall asleep after they get up and reposition their child to go back. How common are these issues with people with cp?
Dr. Milo-Manson (07:29):
Oh, very common actually. So depending on whose studies you're looking at, you may find statistics anywhere from about 50% up to about 75, 80% of children at one point in their early years will have difficulties with sleep. And if you think about it, contrasting that to what we see in a typically developing population, people will up to about 30% at one point, may have some sleep difficulties. Now it could be very short term term, but we certainly know in our children and families with cp, it's very common as it is in certain other neurodevelopmental disorders as well.
Jen (08:18):
Interesting. And again, when you're contrasting it to typically developing children, I'm just kind of following up on that a little bit, but when you're looking at babies and little babies that have cerebral palsy, and I know that all babies have a little bit of sleep training and stuff involved, do you know the statistics on that? I know that we really struggled early on with both falling asleep and waking up through the night, but how much of that was CP and how much of that was a baby or your typical baby?
Dr. Milo-Manson (08:52):
You know what? I wish there was a clear answer to that question and I think it's complicated. I think it result of many factors. We also know that further complicating the answer to that question really as many of our young children have spent more time in hospital, and when you think about spending a period of time in hospital, either because of a medical complication or because of postsurgical complications or surgery itself, nurses have to check vital signs, have to provide medication, have to be looking in on the patient, and that in itself is very disruptive to sleep. So besides all the typical things that parents have when trying to sleep, train their children, if you have a baby or a toddler who has been in and out of hospital or spent more time in hospital, that can also further contribute to sleep difficulties.
Jen (09:53):
So it would make sense to me that they would have maybe not know how to self-soothe as much, which would make sense. You're also in a strange situation being in the hospital a lot too, but some of those habits that typically developing babies are able to form. Perhaps children with cerebral palsy might have more disruptions to that.
Dr. Milo-Manson (10:18):
Absolutely. And we also know that for many parents, if they spent an extended period of time in the NICU for instance who are in hospital that when they first bring that baby home, they're so worried they don't want to have to go back to hospital again. And they might be doing things with their baby like bringing them into their bedroom. If they have the luxury of having another bedroom, then they might've otherwise. So sometimes we establish habits that circumstances just help us do that are then harder to break later on when you realize, mom, my baby's fine, he's not going back to hospital and yet I don't want him sleeping in my room anymore, but he's gotten used to it, so how do we get 'em back?
Jen (11:07):
Exactly. And I guess that comes to my next question, how do you manage sleep problems?
Dr. Milo-Manson (11:12):
So again, great question and I would say the first thing before we can delve into sleep problems is we have to make sure they actually are sleep problems. Good point. We know that so many of our children have complicated medical profiles, may have other comorbid medical issues or challenges that can also lead to sleep difficulties or nighttime awakenings. It could be things like undiagnosed reflux disease, which is very uncomfortable. You've had heartburn, you know that. But our babies, when they go flat in bed, that's when it gets worse and they could be waking up and of course they're nonverbal early on and even many of our children are nonverbal later on. So very difficult to express some of those symptoms, what it feels like. So that's one in toddlers, older children, dental discomfort, dental pain, often underdiagnosed could even be something as simple as in your infection, which can be very painful, particularly when you're lying flat. So all these medical challenges we need to rule out before we can tackle the sleep issues.
Jen (12:36):
So with regards to some of those medical issues, they can contribute to both difficulty falling asleep and waking up through the night. And as far as, so let's say you roll those out or you're managing those issues, you've got reflux under control or pain, what are some of the principles of treatment? How do you kind of go through that process to determine, okay, what are the medical issues and what are the sleep issues and how do we handle that?
Dr. Milo-Manson (13:16):
So again, so important. So assuming then we've managed the pain, the spasticity, all the potential of other factors, we want to make sure that we look for patterns. So typically when a parent comes in saying their child isn't sleeping well, if they've been up all night, sometimes it's hard to really have that perspective of what's been happening over the last few months as opposed to the night prior where they didn't sleep at all. So I usually ask parents to come prepared with even up to a week or five days of a sleep diary. Now I don't want parents staying up all night writing the details in, but first thing in the morning, refresh, write it down while you still have a good sense of time. What time did the child go down to sleep? What time did they actually fall asleep? What time did they first call out to you? What time did they wake up in the morning? What did you do when they woke up? Did they nap during the day? How often did they nap for how long? Morning, afternoon, et cetera. And that will help us actually look for patterns that we can then try to intervene and set up a treatment plan.
Jen (14:32):
And is this called sleep hygiene? Is that where you're going with that? Well, really
Dr. Milo-Manson (14:39):
What I was going for was a sleep diary, but one of the things that I'm looking for is then trying to make differences in really routines. Sleep hygiene is actually an important term and really sleep hygiene is anything that happens to a child as he or she is falling asleep. So we always want good sleep hygiene and good sleep hygiene just means that the environment, the scenarios, the atmosphere that there is happening to a child as they're falling asleep if they were to awaken in the middle of the night can be replicated. So for instance, a child who falls asleep in front of the television in the family room or living room is then tiptoed up to their bed and put asleep and then two hours later wakes up in a room that doesn't have a TV on, doesn't have the sound, doesn't have the light on, is very different. So that child couldn't then replicate on their own falling back to sleep. So we want to set the child up for falling asleep to make it as easy as possible should he or she wake up in the night to then soothe themselves and put themselves back to sleep on their home.
Jen (15:52):
That makes a lot of sense. And I think about all the mistakes I made early on and go and you pick 'em up or lie him on your chest and he falls asleep there and then I lie am back down. And I'm sure a lot of parents can probably relate because we just want our child to be comfortable and it's hard. I feel like our kids have been in the hospital so much, they've experienced so many things, then you hear them crying out in the middle of the night and you want to do everything you can to help them soothe. But it does sound like the ideas have a routine that is replicable, which I really like that it's incredible advice. I wish I had that one earlier. I know I've been doing that for a long time now, but early on I think that we were a little bit more all over the place because we were struggling so much with medical issues. And even then, I guess, and even now, if your child does wake up in the middle of the night and you do feel like that you've got that sleep hygiene down or that you've gone to visit you and you've done your diary and you think the or pain is managed or maybe some of those underlying reasons like reflux or spasticity, what happens if you're still struggling with insomnia and night awakenings? How do you manage
Dr. Milo-Manson (17:24):
That? So again, I think setting family up for success is important and having realistic expectations. So if we've identified four or five things that we need changing or need to work on, you can't expect to remove all of those patterns and make changes all in one night and then tomorrow morning everything's going to be perfect. Changing behavior is slow, it takes time and it usually is much more successful when we're working on one behavior at a time. So the child who's falling asleep in a different room but only falling asleep listening to music or a TV or with a bottle in their mouth, again, I'm talking about a bit of an older child where we're not concerned about nutrition anymore. We need to think about, so what can I change first? And I work with the families to say, okay, maybe the first thing we want to do is move the routine from the living room with the TB on to the child's bedroom.
(18:28):
So I will still be there, I will still give a bottle, but the child is now going to have those final minutes as they slowly get ready for sleep in their own room. And then we can work on taking away, let's say the music, but not something that you want to stay on all night or take away the bottle feeding or if it's appropriate. So again, it's working with the families to prioritize what is most important and working on those behaviors one at a time. So we always work to use environmental changes, behavioral changes, that's number one. But there are some children for a variety of reasons and we can maybe chat about that a little bit later where we need something else, something in addition. The behavior might've been happening for years and then it's going to take a little bit more work or really parents are at their wits end, they're not functioning well and I'm worried about the entire family. And in those situations we do think about medication and I believe there is a place for medication never by itself, but in conjunction with behavioral interventions to help manage sleep problems more successfully. And it doesn't mean that families are signing up for medication for life for their child's sleep problem. We use medication for a period of time until we can get a good pattern established. And then our goal is always to take the medication.
Jen (20:12):
So what medications, how would you go down that route? What's the first step? What do you usually look at? Is it melatonin first and then something more pharmaceutical? What does that look like?
Dr. Milo-Manson (20:28):
So I would say in my practice, and I guess most important is people should be doing this in conjunction with the physician or a nurse practitioner. If they may have a good relationship or Ed, she or he feels comfortable, but really important to be doing this in collaboration. But I would say for many of the children that I work with, the first medication we use is melatonin. Easy to find, comes in lots of formulations, liquid gummies, spray, although I haven't seen that gear, but my colleagues in the US tell me you can get melatonin of the spray and you can also start at very tiny doses and work your way up. So generally I start with melatonin. It does come into formulations also besides different ways you can purchase it, but it also comes as short acting or slow release or timed release. And it's important for families to appreciate. They think, well, it started with melatonin, but my child falls asleep now much more quickly, but suddenly four hours later they're wide awake and ready to start their day and melatonin only lasts about four hours.
Jen (21:51):
Oh, interesting.
Dr. Milo-Manson (21:52):
Which is why they've come up with a timed release or slow release formulation. But that in itself is a bit challenging for some of our kids because to be able to manage a slow release, time release medication, you have to be able to swallow a pill or a capsule, which some kids can do and unfortunately some can't. So all situations we have to use a second dose of.
Jen (22:19):
And I know from watching your presentations before, one of the things that you've said about melatonin is it's not a long, you don't take it long-term or you don't prescribe for families to take it. Can you tell us a little bit about your thoughts on that and then how you wean somebody off melatonin
Dr. Milo-Manson (22:37):
If once they're on it? Great question. And again, it's not just from melatonin. Any medication, sleep medication that I use, the goal is always to try to get the child off. The important thing that I sometimes will come across some families who say, I've tried melatonin didn't work, I need something else. But you need to actually see how they're using melatonin. Melatonin really should be used at approximately the same time every night for two to three months straight, not just when you think the child is going to have a more difficult night. Really what we're trying to do is get that child used to falling asleep at the same time every day, waking up at the same time every day. For instance, I know that my alarm clock goes off at the same time every morning to get up and do everything I need to do to get to work on time and then come Saturday or Sunday or a holiday, I often find I'm still waking up at 6, 6 15 and I'm thinking, oh yeah, it's Saturday, I can go back to sleep. I do. My body has for 25 plus years waking up at the same time so that I'm used to that and we need to slowly get that child used to falling asleep but at the same time and then waking up at the same time.
Jen (23:55):
So once as far as you've done the two, three months of the melatonin, do children develop or do any of us really, I know so many parents that also take melatonin. Do we develop a dependence? Does our body stop producing melatonin on its own because we're taking it? What happens and how do we stop taking it? Can you stop taking it abruptly or how do you lean yourself off of it?
Dr. Milo-Manson (24:21):
Great question again, Jennifer and I would say that melatonin, you can't just stop. There are some medications, however that you really should not stop and we do need to wean slowly off of melatonin, you can just stop. But I also find that families who finally have success are a little reluctant to do that. And I just find it's very easy just to cut the dose in half over three to five days and then cut the dose in half again depending on how much a child who's taking. And if a family is really nervous about stopping, we can even go to alternate days. But in general, usually within five days you can cut the dose in half and then cut it once more and then just stop. But there's certainly unlike some medications where you can habituate to them, melatonin is safe to suddenly stop.
Jen (25:15):
That's good to know. And it's nice to know too that families have that option of weaning and I know for me it would make me feel better. I like that slow wean idea. What about, let's say you've got melatonin on board, you're still having issues. Are there pharmaceutical options for kids to help them sleep? I know that I think about for adults, we always hear us taking Ambien and things like that. What happens or how would somebody work with their physician to identify pharmaceutical options to help their child sleep?
Dr. Milo-Manson (25:57):
Great question. So again, I want to make sure that we've exhausted the use of melatonin just because it is so safe and easy to use. But once we really feel like it hasn't made a difference, then we're stopping it. It's time to try something else. Again, I would go back to working with your physician because there are certain populations where there might be things that you would try first. If I had a child who had A-G-M-S-C-S level four or five, I would want to make sure that we don't have spasms that are really interrupting sleep at night. And I would want to make sure that we've worked our way up to a good dose of oral Baclofen
(26:41):
And in our kids, let's say who might be G-M-S-C-S level one or two really don't have a lot of challenges with spasticity, a lot of pain, but maybe let's say have severe A DHD, I might be inclined to try a different medication like clonidine, whereas otherwise I might be using clonazepam. So again, this is where it's really important to partner with your physician and really see what the next medication we should try is. Clonazepam is one that I often will use after I've made sure that again, the child is not in pain due to spasms. And sometimes maybe just before I move on, if I do find a child who does have a lot of spasticity issues, a lot of pain with that and Baclofen doesn't seem to be doing the tre, occasionally we do have to work and add gabapentin or medication when we are sure it's really pain. And clonazepam though is a medication. One of the reasons that I like using it when I have to go to my prescription medications is that you can have it formulated with a pharmacist where eight no comes in very, very tiny doses and you can work up very, very slowly. So 0.1 milligrams per ML concentration and depending on the age and weight of the trial, that might start at 0.1 even or at 0.3. And then very slowly work my way up until depending again on the weight, the age size of the child up to let's say one milligram if an older child to make sure that we've really tried or exhausted that medication before we would then look to their medication. This is very
Jen (28:42):
Much ignorance on my part, but clonazepam is used to treat what it's not like I think if gabapentin for pain or baclofen for spasticity, what does clonazepam actually do? If it just puts you to sleep, what does it do?
Dr. Milo-Manson:
As a matter of fact, in much higher doses it is often used for epilepsy. Previously was used, but we are not using anywhere near the concentration you would to help with epilepsy. Also, it is used in children with great deal of let's say irritability. We just need to calm them. It can sometimes be a medication that's added to their regime, so it tends to calm, make the child a little bit sleepy. Unfortunately in pediatrics sometimes a lot of these medications are used off-label, which means, I mean they do have to be researched. We do need evidence to support their use, but often the medications we use, for instance Baclofen was to control spasticity. It does have a side effect of making use sleepy though. That's why using it at night, if spasms are the problem, it also induces sleep. And so that's why in pediatrics we have fewer options perhaps and a fair bit of trial and error, but ultimately everything needs to be studied so we can try to find the best medication with good evidence to help our kids.
Jen (30:23):
Yeah, for sure. Well, that leads me to some of these other questions I had. So what about antihistamines? A lot of people talk about giving, I'm not a fan of antihistamines.
Dr. Milo-Manson (30:34):
I don't if you've ever had any friends tell you that I wanted my child to sleep on their first long flight to Europe. Yes, that's exactly what I was thinking about. Yes. And unfortunately it had the opposite rebound effect where it actually suddenly woke the child up and they were bright-eyed and not interested in sleeping on that flight at all. So it's kind of a rebound effect.
Jen (30:58):
Oh my gosh. And what about, I guess thinking along those same lines, I was actually just before this podcast talking to somebody and she takes magnesium for sleep. What about magnesium? I've seen at both as an oil that you can rub on or where you can take it orally. Is that researched? Is that helpful? What do you think?
Dr. Milo-Manson (31:18):
Yeah, though I have seen, and there's even some combination medications on the market that have large doses of magnesium in them. So is there a lot of evidence? No. Should there be, yes, it's worth studying. Some people anecdotally will tell you it does make a difference, but we don't have good evidence that it actually works. And you also have to be careful because magnesium also can result in diarrhea if given two high doses or some kids are more sensitive, can cause stomach cramps. So you want to make sure you're not causing a new problem by fixing an old one.
Jen (31:57):
And it also seems like there's a whole bunch of different types of magnesium. So I think that's confusing to people as well.
Dr. Milo-Manson:
Absolutely. And in fact, even with melatonin, actually, if you go to a health food store for instance, you can find your melatonin, but you can find melatonin mixed in all sorts of interesting combinations with other minerals and vitamins. And we do not want that because then we actually have a harder time knowing how much melatonin or magnesium, if it's a magnesium combination sleep aid that the child is actually getting so less control over that amount. So my recommendation, if you are going to go down that route, always make sure you're going for pure magnesium, not mixed with a number of other supplements or minerals. So I'll stay on this line of
Jen (32:51):
Thinking, what about essential oils?
Dr. Milo-Manson (32:55):
So feels good may relax you herbal tea relaxes me before bed. Is there any evidence that it actually improves sleep? No.
Jen (33:09):
Yeah,
Dr. Milo-Manson (33:10):
Harmful?
Jen (33:11):
No.
Dr. Milo-Manson (33:12):
And if it makes you feel good and the child feels good, often you're massaging it that relax a child. So none of these things are, they're things that you would do for perhaps any child.
Jen (33:26):
Yeah, a little bit of wellness and maybe that just makes everything a little bit calmer and more comfortable. Here's the biggie. What about medical marijuana? I know that where you are in Canada, it's legal. I would think that here in the US we're all over the place. Is there any evidence for that in helping sleep?
Dr. Milo-Manson (33:47):
Yeah, I'm so glad you asked this question and it's coming up more and more and more and I wish we had some really good studies looking at sleep and cannabis, but we don't, I'm so pleased in many areas, we know in certain forms of epilepsy it can be medicinal, marijuana can be quite helpful. There's more and more evidence coming out. There are some early studies. Do we have the evidence to say it works in pediatric sleep disorders? No, we don't. We're not there yet. We also know that it can have a role in the developing brain, which not a good outcome in terms of potentially impacting that. And so I think we have to be cautious just because it's legal. And in Toronto I can walk to probably three cannabis stores from my home, but that doesn't mean that it's safe for use in kids and adults for sleep only.
Jen (34:54):
Yeah. Well thank you. I appreciate you being willing to answer that question. A lot of people don't want to touch it, so I appreciate that. And kind of going into, I guess thinking about behaviors and things and families really struggling, what about those kids that wake up so super early? I mean, what do parents do? Do you try to create habits and let the child just stay quietly in their room or play in bed how to help? How do you help families that are struggling on that end of the sleep spectrum?
Dr. Milo-Manson (35:31):
Yeah, I would say the first thing I do is actually say what time does the child go to sleep and how much or is the child still napping? And for how long? Because what parents sometimes forget is that a child's, let's say they're having two naps going down at seven 30 at night and they're up at four 30 in the morning ready for the day. Parents aren't, and the rest of the family is not ready at four 30. But what you have to look at the amount of sleep a child is getting in a 24 hour period and that child may be getting way enough sleep. So what you need to do then in those cases is change the bedtime. We know that for some of our children, particularly if they have a significant cognitive impairment, so developmentally they may be at a very young age, hormonally, they might be a teenager, physiologically they're a teenager, and teenagers don't usually go to bed at six 30 or seven o'clock in the evening.
(36:33):
So it's educating parents. So they will shift that bedtime to a more realistic bedtime. And for kids that are napping after school, yes, they might be a little bit tired not trying to discourage that. And there are ways to try to encourage favorite activities or active things, but you need to look at how much sleep the child's getting in 24 hours, then try and shift the bedtime. That being said, there are still a group of children who are early rises, the sun comes up or even before the sun and they are ready to be up for the day. And again, what I would look at is the child's cognitive intellectual level for our children who are able to read, for instance, a digital clock sometimes saying if you can stay in bed until 5 0, 0 on that digital clock, then there are stickers. There's rewards that are important to the child.
(37:32):
You can give the child something to do safely if they can do it, if they're able to read a book, if they're able to play with a soft toy. Again, it's very much dependent on the child's developmental level, but we try to encourage the child to stay in their own bed and you have to start slowly waking up 4 30, 4 45, we want to get them to five, then five 30. This is a child who's not going to stay in their bed till seven 30. So we have to be realistic in our expectations, but certainly setting limits to have that child stay in their bed until a later time, that's more amenable to the rest of the family is important.
Jen (38:21):
That makes a lot of sense. It sounds like a lot of bit of sleep training for the parents too and making that compromise where, okay, your child may be an early riser and you're going to have to split the difference here. You're not going to get to sleep till or wake up at 7:00 AM every morning. It might be a little bit earlier, but I get that. And as somebody who likes those last few minutes in bed in the mornings, I think that would be something that I personally would really struggle with. As far as resources go. You mentioned it earlier as far as a sleep diary or tracking progress, are there resources to help families do this besides just having a little journal or a little notepad for them to do in the mornings? Are there things online? What would you
Dr. Milo-Manson (39:17):
Yeah, I'm so pleased to say that more and more there are free resources that can be very helpful to families. So there is a Canadian resource, it's called Better Days, better Nights. A Penny Ham is a PhD scientist out in Halifax, Nova Scotia, and she has actually published a lot of sleep diary frameworks, just really basic level 1 0 1, kind of how to help your child sleep, but resources that can help you track more easily and you can download these, they're free. So just Google better days, better nights, and you can find those. The other resource for our children who respond really well to visual cues, the autism treatment network has some lovely pictures to how to help your child know that to set up the routine so they know what to expect. And again, negotiating may not be the tricks that works with your child. And sometimes having those pictures on the fridge in the kitchen or wherever the child spends most of their time as constant reminders of what's coming next is great. And those are also free to download from the autism treatment network. So that's just a couple of examples, but there are many things. Again, please speak about what you found or areas you'd like to learn your practitioner as well because they may also have maybe more local resources that could be helpful.
Jen (40:59):
Do you ever, I guess thinking about local resources, is a sleep study something that families that are really struggling with this should talk to their provider about doing?
Dr. Milo-Manson (41:11):
Yeah, and I would say there are times when sleep study is critically important, but there are questions that a pediatrician or a developmental pediatrician child neurologist would be asking or a nurse practitioner even in order to decide if there are red that suggest obstructive sleep apnea or a true obstructive sleep problem. That war going for a sleep study. A sleep study is not an easy thing for a child to do.
Jen (41:46):
That's what I was thinking and I was just thinking what would you actually get from it? Because I'm just imagining that trying to get your child to sleep in that situation and with all the things attached to 'em and everything
Dr. Milo-Manson (41:59):
Else, well just think of yourself usually, let's say you're going on a vacation the first night in a new hotel, no matter how comfortable that bed is, rarely do you have a good night's sleep.
(42:11):
And so you can just imagine a child going to a foreign environment, different environment with all sorts of things attached, strangers coming in and out of your room, that in itself is not inducive to a good night's sleep. So the majority of time our kids actually don't have a good night's sleep and study inconclusive. But for instance, if you have a history of a child who as they're falling asleep is perhaps choking or when they are asleep, the family hears their parent hear gurgling, coughing when they're sleeping, when they don't have a respiratory illness, long pauses in their breathing, needing to sleep on several pillows. Those are things that are red flags
Dr. Milo-Manson (42:59):
Again should be discussing with your family doctor, pediatricians, specialists, and those are the children that I would refer for a sleep study.
Jen (43:10):
Got it. I was thinking about, for us, one of the things that we always did in sorting out our sleep issues was just taking videos. And when Bauer would wake up in the middle of the night, we were able to clearly show, okay, something is causing him to have these abrupt dystonia movements. And so I could catch that on video and then show the doctor and say, this is what's happening and it's happening multiple times a night. And so that's how we were able to sort out because it wasn't happening during the day. And so when he was sitting upright, he wasn't necessarily having the issues and able to suss out, okay, there's both reflux and then dystonia as a result, he'd have this pain and that would cause the bad movements. But it was, I think videos were really helpful to us.
Dr. Milo-Manson (44:01):
I agree. It's been a game changer when I think now my age, but when I think about when I first started practicing and people used to have these big things they carried on the shoulder film where kids taking their first steps and now we just pull out our little phone and we take a quick video and what a difference it makes when you can actually just pull it up and show your healthcare provider what's happening. I have found that particularly helpful. Sometimes we've had children actually have nocturnal seizure and that their epilepsy or seizure manifest in the nighttime and that's causing them to wake up, for instance. In those instances, we obviously referred to a child neurologist who then organized overnight EEGs, but that first video clip as to this isn't behavioral, I don't believe isn't behavioral. I think there's something else going on here and then saying, I think this may be, let me refer you to someone else.
Jen (44:59):
Yeah, that's very helpful to know. And I guess finally, what would your key takeaways for families and individuals struggling with sleep B two three?
Dr. Milo-Manson (45:10):
What you got? You're not alone. This is not happening to your family, although it probably feels like that sometime. Sleep problems are very common, not just in children with cerebral palsy or other neurodevelopmental disorders, but in typically developing children as well. Although again, as we discussed earlier, much more frequent in our children with cerebral palsy. Oh, we start with behavior interventions first. Remember, changing behavior is slow. If your child's been doing this for three years, then fixing it tonight for a good night's sleep is probably not going to happen. But we can work together changing one behavior at a time so that we're going to get there and have realistic expectations. Right. Again, even though you're exhausted, you'd love your child to go to sleep at seven o'clock as a 13-year-old, that's not very realistic. And we need to set expectations that are more realistic and just know if you are exhausted, your child's exhausted the rest of the family, but you really need to be working and reaching out with your practitioner healthcare practitioner so that you can work together and get the support that you need to make a change. And eventually, although it won't happen likely tomorrow, but eventually to get a good night,
Jen (46:33):
Thank you. That is incredible advice. I'm very grateful and I hope that those listening take that advice. I know that for those of us who have struggled with sleep, it truly is, it's exhausting. And I'm just so thankful that you took the time to be on the podcast today. Really enjoyed it. And I do, I learn so much from you. Every time we talk about sleep, I think sometimes my lack of sleep, I forget things. I appreciate it
Dr. Milo-Manson (47:07):
Having me, Jennifer. It's just been a pleasure to chat with you and look forward to seeing you again soon. Thank you, you too.
Jen (47:17):
Thanks for listening to the Cerebral Palsy Health podcast with me, Jen Lyman. If you enjoyed the show, please subscribe wherever you listen to your podcast and follow me on Twitter and Instagram. You'll find the links in the show's. Please feel free to email me with comments, questions, and topics you'd like to learn more about at JB Lyman at Mac. That's MA c.com. This podcast is for educational purposes only. This podcast is not a substitute for a medical doctor or any other medical provider. This podcast is provided on the understanding that it does not constitute medical advice or services. We encourage all of our listeners to have an open, honest discussion about the topics presented on this podcast or any other medical concerns with their personal medical team.