Episode 7: Sleep
Children with severe developmental disabilities or autism often have difficulty with sleep which can not only impact on their sleep, but affect the whole family. To understand why this occurs and what can be done we talk to Assoc Prof Margot Davey from Monash Childrens’ Sleep Centre
Hosted by Kris Pierce and David Cunnington, parents of Will, who has SCN2A.
- Sleep in children with special health care needs – Research article
- Monash Childrens’ Sleep Centre
- Talk by Margot Davey on managing sleep in genetic epilepsies – video from 2hr41min to 3hr 16min
Assoc Prof Margot Davey is Director of the Melbourne Children’s Sleep Centre, Monash Medical Centre. Margot is also an adjunct senior lecturer in the Ritchie Centre, Monash Institute of Medical Research, Monash University. Her clinical practice is paediatric sleep medicine, and she works in public and private settings (Epworth Sleep Centre). Since 2006, Margot has been a chief investigator on four successful National Health and Medical Research Council (NHMRC) grants. She has numerous peer-reviewed publications.
Ms Kris Pierce RN MHSc MWellness, is a rare disease advocate and mother to Will who has SCN2A. Kris has held a range of board, project management, advocate and consumer representative roles and has been instrumental in working with local, state and federal governments to secure funding for multi-million dollar projects. Kris is highly skilled in building teams to work together collaboratively and is a co-founder of Genetic Epilepsy Team Australia (GETA) and SCN2A Australia, and a RARE Global Advocacy Leadership Council member.
Intro: Welcome to SCN2A Insights bringing you the latest research and clinical updates on SCN2A and genetic epilepsy from around the world.
Kris Pierce: Hi! I’m Kris Pierce.
David Cunnington: And I’m David Cunnington.
Kris Pierce: And in this episode, we are talking sleep.
David Cunnington: I’m actually an adult sleep physician so I see people with sleep problems. I had the chance to interview Dr. Margot Davey who is a pediatric sleep specialist and works at Monash Health. Margot has got a lot of experience in managing children with developmental disabilities and trouble with sleep. So I hope you find this interview with her helpful. It formed part of a podcast episode that I run a separate podcast on sleep called Sleep Talk, talking all things sleep. If you’re interested in sleep, check that podcast out as well.
Thanks a lot, Margot, for helping us out.
Margot Davey: Pleasure.
David Cunnington: So what sleep problems can occur in children with severe developmental disabilities?
Margot Davey: I think these children can suffer from a range of sleep issues. They can be issues with settling to sleep and maintaining sleep and parents having to be very involved with that routine every night. There are children who can have impaired quality of sleep because of breathing issues or seizures or other medical conditions that can interfere with their sleep. And then with children who for example have visual defects, we can actually see problems with their rhythm of sleep and their night/day differentiation. Children with significant developmental disabilities really can have a lot of sleep problems.
David Cunnington: How does that differ in terms of the prevalent compared to normally developing kids.
Margot Davey: I think looking at the prevalence of sleep problems in typically developing children, we would say about 20-30% their families or parents would say that their child has a sleep problem. When you look at the group with developmental disabilities, it jumps up dramatically. Some studies say 40%, some say 80%. I think it’s really very prevalent and very common.
David Cunnington: So why is that different? What is it about kids with severe developmental disabilities that gives that incidence of sleep problem?
Margot Davey: Partly it could be that parents accept their child sleep problems as part of their disability and therefore some strategies that we would use for typically developing children like improving independence at falling asleep during the night, they don’t feel as relevant to their child.
Secondly, they do have a lot more medical problems interfering with their sleep. They could have breathing problems. They could have reflux. They could have difficulties with saliva control. They can have pain from contractures or spasms. There’s a whole lot of medical issues as well that will be affecting their sleep. Some of these children may have epilepsy and that can also lead to sleep fragmentation. And if epilepsy isn’t well-controlled can lead to poor quality sleep and frequent waking. I think there are many, many reasons why.
David Cunnington: Certainly, as a parent of someone with or a child with some developmental disability, we know we can be frazzled and feel like get the kids into the bed and poof, your day is done. Can parenting have a role on sleep problems in kids?
Margot Davey: Look, I think it’s parenting and children in general. It’s very much a symbiotic relationship. And you can do one particular sleep pattern for one child and they sleep through and it’s not an issue. And then with another child, they can wake up frequently and have lots of struggles. I think the personality and temperament of a child needs to come into it rather than saying just the parenting style.
I also think it’s very hard when you’re very worried about your child for whatever reason and you have to be super vigilant for medical problems. I think that also makes it very difficult. Also, sometimes since it’s that situations where children become very reliant on the parents to fall asleep and parents sometimes are at a loss at how to tackle and change that.
David Cunnington: It’s a nice segue to then talk about what parents can do. What are some strategies that can help?
Margot Davey: I think some of the strategies that can help as you said, I want to put the children to bed and I want this day dusted. I think looking at the time from going to bed and actually falling asleep is really important. And particularly, it’s children’s age. Teens do tend to have a change in their circadian rhythm. They are able to start a little bit later.
I think there’s a big difference between lights off and when a child falls asleep of any age. That doesn’t promote a good sleep pattern. I think looking at that difference and maybe making the bedtime routine a bit later so that the child physiologically is actually able to fall asleep, I think those things can help.
The other thing is often parents will say, “I don’t have any problems getting my child to bed.” And they have a very complicated ritual and they have been doing at 8:30 at night. But then they are not so happy at 1:00, 3:00, at 5:00. I think looking at how involved the parent is in helping their child fall asleep and seeing if there are ways that you can change that.
David Cunnington: There’s a lot of overlap with what we do in adults. As adults, compensate through strategies. We say with insomnia, if you’re not sleeping well, go to bed earlier.
Margot Davey: Yes.
David Cunnington: Then as an adult or as a parent, it’s logical then you will do that same thing to your child, going to bed earlier. It’s helpful to try and avoid that.
Margot Davey: Yes. I think also with some kids who have worries or anxious and particularly children who can’t communicate those needs as well, putting a child to bed too early allows a lot of opportunity to sort of mull over things or make those things worse and sometimes the less sleep onset even further.
David Cunnington: Sometimes there can be difficulties with self-soothing. As adults again, we can have difficulties with self-soothing. That’s an important life skill for people to develop.
Margot Davey: Yes.
David Cunnington: Getting off to bed. If there is that only ability to settle with a complex routine or a set of circumstances, it can almost become sort of a heavy burden to carry.
Margot Davey: Yes, it certainly can. I think that when you are tired and sleep-deprived and trying to be the best parent you can and often in these cases, looking after these children, the best sort of caregiver all the time, it’s hard sometimes to step back and say, “Hey, you can change it.” But I think one other thing is having a look at how many bits to the routine there are and trying to work on one in a supportive way and gradually changing it. These patterns are learned, and they can be unlearned or replaced by other things. I think it’s allowing a child the opportunity to learn some different skills to help develop some self-soothing and settling overnight.
David Cunnington: That’s a tricky balance. It’s nice to have that sort of self-soothing routine. We have our thing. I read a book. I start to fall asleep. I’ll turn the light out. That’s my sort of settlings. But it’s a balance of something short but transportable and not something that’s too complex and hard to reproduce.
Margot Davey: Correct.
David Cunnington: Body clock problems you talked about a bit earlier. What are some things that can impact on the body clock and things parents can do to get better sleep and enhance that?
Margot Davey: I think when we all heard those things, what’s really important is regular routines and schedules. Sometimes it can be tremendous difference between say for example, weekdays with parents working and other children in the family and looking at bedtime routines. Sometimes it can be two hours, three hours difference between one night and the other. That’s not really very helpful in establishing good sleep patterns.
I sometimes describe it to parents, it’s like jetlag. You’re flying from Melbourne to Perth and Perth to Melbourne and expecting yourself to correct in two days and then you are setting it up again a couple of days later.
I think trying to have a predictable routine, looking at wake-up times in the morning and not having too much difference between holidays weekends and weekdays and then maximizing exposure to light in the morning to try and help reset that rhythm and making sure that kids are eating in the morning or having something to help signal to the brain, this is daytime, not nighttime. Really highlighting those cues that help all of us live during the day and sleep at night.
One of the things I haven’t mentioned is sometimes children with developmental disabilities can sleep quite a lot during the day. Sometimes if they are on a bus to go to school and the bus is 30, 45 minutes there and back, sometimes if they fall asleep in class, sometimes teachers aren’t as vigilant, and they are allowed to sleep. I have certainly looked after children where when we’ve really documented it closely, they might have had up to 3 hours sleep a day. And that’s obviously going to impact up on the amount of sleep at night. I think that’s another thing to think about when you are addressing sleep problems in children.
David Cunnington: What about blue light at night? Is it really that important?
Margot Davey: I think it is important. Increasingly, there’s work looking at our body’s physiological mechanism and secretion of melatonin, which is a chemical that’s produced in our pineal gland that helps us. It’s the hormone of darkness. Our sleep cycle is often centered around that.
One of the things that we have learned over the years is that light and particularly blue light is an incredibly powerful suppressor of that. And so, I think with the change in our society of having all these devices, portable, small, we can take them into our rooms, it does have an effect. So I think trying to look at how much screen use is happening before you go to sleep, before you turn off lights because it can certainly affect some children and some adults. In fact, recent work would suggest that teenagers are the most vulnerable age group of our lifespan. So of course, they are the ones that often are more addicted to it than others.
David Cunnington: What’s the role of melatonin?
Margot Davey: I think melatonin has two roles. One, it can be used as a sort of hypnotic to help us fall asleep in slightly high doses given about half an hour before you go to bed. It’s also has a very powerful effect on maintaining our circadian rhythm and that is often neglected or not really thought about. Most people use it to help you fall asleep. I think there’s a lot of evidence out there that it’s certainly can help you fall asleep earlier.
But when you look at all the studies, the amount is modest. We are talking sort of 30-45 minutes which certainly in some family can make a huge impact but I think you do need to look at other things such as routines, patterns of falling asleep to get maximum benefit from it.
David Cunnington: In the adult literature at least, we are looking at manipulating the circadian rhythm. Melatonin seems to be almost the fine print and light and scheduling are the keys. Is it the same in the pediatric literature?
Margot Davey: I think for certain groups, perhaps it’s a big bolder print. I think children with autism, there certainly has been a lot of work looking at the physiology of melatonin secretion and the responsiveness to it and there certainly are some children who do have very significant effects.
I think there are some medical conditions where there is a physiological basis. Melatonin might be more helpful than in other kids. But it’s not one melatonin solves everything.
David Cunnington: That’s often what I say too in adult practice. People take the melatonin but they are forgetting about light and they have not got a regular routine and a regular schedule. Really, taking melatonin without doing the other pieces is you’re not going to get the results out of it.
Margot Davey: I think that’s true. and as I tell my teens who say, “Oh, what about this melatonin?” And you go, “Well, you’re doing everything possible to suppress it. What we need to do is look at harnessing things that we know improve secretion of it and then we can talk about it.”
David Cunnington: So we talk a bit about some behavioral things. Is there ever a role for medication in sleep in children with severe developmental disabilities?
Margot Davey: Look, there is a role but I think one of the first things that need to be done is to make sure that there’s nothing medical interfering with the children’s sleep. I think things like breathing problems, the most common cause in this group of children would be something called obstructive sleep apnea where there are repeated blockages or obstruction to the airway that can interfere with sleep quality and breathing. I think it’s very important to make sure you’re not missing anything that could be interrupting a child’s sleep.
Similarly as I mentioned before, some children have significant issues with saliva control, pain from spasms or sometimes if they can’t move properly, skin irritation, so I think before I think that medication to sedate or help a child sleep through, it’s really important to make sure I’m not missing anything else that could be contributing to it.
David Cunnington: Thanks. They are some really great strategies. When should someone think about coming to bring their child to see yourself, a pediatric sleep specialist?
Margot Davey: Look, I think a child’s sleep problem obviously has significant impact on a child in terms of their ability to learn, concentrate, function, their modulation, or their behavior, there’s a whole lot of things. But I think we also forget sometimes about the family functioning and how hard it is. I saw someone last week where the mom said, “We are so tired in our day. I nearly had a car accident.” That’s when it’s really affecting family functioning as well as a child’s functioning, I think it’s important to be assessed because there maybe things medically that are happening that unappreciated and there may be other things that we can talk about in terms of routines and schedules that we can improve things.
David Cunnington: Great. Thanks for your help.
Margot Davey: Thank you, David.
Kris Pierce: That was a fantastic podcast, giving some helpful advice and information to parents who are trying to help their children sleep.
David Cunnington: It can be a real issue for carers because if kids aren’t sleeping well or people they are caring for aren’t sleeping well, it can have a major impact and just makes life’s day-to-day things much harder to deal with.
Kris Pierce: I certainly remember the early days with Will when sleep was not very common and yeah, it’s very difficult as a parent with a child who is not sleeping.
David Cunnington: If you are looking for more information on SCN2A or genetic epilepsies, you can keep up with the latest updates by subscribing to this podcast. You can also get regular updates from our social media channels so SCN2A Australia’s Facebook or Twitter at SCN2A Australia.
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Outro: This podcast is not intended as a substitute for your own independent health professional’s advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider within your country or place of residency with any questions you may have regarding a medical condition.