Sleep Webinar Part 3: Sleep and Down’s Syndrome: What’s going on? Why should we address sleep problems? - Professor Cathy Hill
There are many implications that flow from sleep deprivation for individuals with Down syndrome, particularly for young children. In this segment, Professor Cathy Hill explores common issues, consequences, and the compelling reasons to identify and address sleep problems.
You can watch this section of the Webinar here on YouTube.
Classifying Sleep Disorders
What's going on? Parents are telling us there are problems: children are not sleeping as long and waking up more. What is this all about?
The importance of diagnosis: We have to find a cause. You can only really manage and treat something if you know what the cause is. In sleep medicine, we work to this classification. People often think, "My child has a sleep problem, I need to fix it," but they don't think about what is causing it.
There's a whole bunch of different reasons. When I teach doctors about sleep, I say: if you have a cough, you don't treat the cough: you try and find out if it's asthma, a chest infection, or a tickly throat. They are all very different and will have different treatments. Exactly the same is true for sleep disorders.
Common sleep disorders:
Here are the kinds of things we're looking at:
- breathing problems at night;
- insomnia (difficulty falling asleep and staying asleep);
- being too sleepy in the day (rare disorders like narcolepsy);
- parasomnias (like sleep terrors and sleepwalking);
- circadian rhythm disorders (where the body clock is not working properly);
- and movement disorders of sleep.
My trick is trying to unpick what's going on, because many of these things present in exactly the same way: cannot go to sleep, cannot stay asleep, and too tired in the day.
All of these things may potentially be involved.
Understanding Insomnia: Sleep Onset Association Disorder
I'm going to talk first about insomnia. It is the most common sleep disorder we see in children. No matter what the underlying developmental issues or medical problems might be, insomnia is very often part of what we are seeing.
Habits and environment: One that might be familiar to you is the most common insomnia we see, and it has a fancy long name: sleep onset association disorder.
The concept is that every single one of us on this planet learns to fall asleep or has a preference for falling asleep in a very particular environment. Stop and think for a second: when you settle yourself down to sleep, in those ten to fifteen minutes before you go to bed, I bet you do something rather similar every night. Most of you will have a habit. You like your bedroom a certain way, the lighting a certain way, or maybe you want the radio on. You'll probably put yourself into a particular position in bed.
The pillow analogy: Once that is all good, it makes it a wee bit easier to fall asleep; you've learned that association. Most of us in the Western world have pillows, don't we?
That is a cultural thing we do – not all over the world, but we tend to have a pillow.
You're in your bed, you've got your pillow, and you settle down to sleep. Imagine you wake up after your natural night waking – you had fallen asleep, everything's good, you had your pillow. Then you have your first natural night waking; we all do it, probably every hour after that first nice chunk of deep sleep. But your pillow is gone. You're not going to go back to sleep. You're going to feel quite anxious, things will feel strange, and your bed will feel odd.
The anxiety of change: This is the idea behind sleep onset association disorder. Many parents and children develop a habit around settling the child to sleep. I have done it as a parent, and many parents I see do it. We put a lot of effort into getting our child to sleep, which might mean rocking, cuddling, soothing, musical toys, lights, or warm milk. They often work fantastically well, and the child goes to sleep beautifully.
The waking dilemma: The problem is when you have that first night waking: the rocking isn't there anymore, the music isn't there anymore, and the lights are gone. You're not going to be able to fall asleep again because your metaphorical pillow has gone. So what does the child do? They're not comfortable and cannot go back to sleep because this isn't how they fall asleep. They're going to shout for mom or dad or come out of the room. The parents are going to go in and do the whole thing all over again. That might sound familiar to some of you, but it is the most common sleep disorder we see.
Learning to self-soothe: One simple tool of the trade – and I think every parent and antenatal class should be taught about this – is that at the right time in a child's development, you encourage and help the child to learn to self-soothe themselves to sleep. It is never too late, even in the teenage years. Settling to sleep should be a lovely, soothing process; it does not have to be harsh or scary. In fact, it absolutely shouldn't be.
Independent sleep (and co-sleeping): The point is that the child settles in their bed independently, sleepy but not quite asleep yet, and the parent hopefully exits the room. Assuming you don't want to co-sleep; if you want to co-sleep, that is absolutely fine and that is your choice. It is quite culturally common in the UK for people to want their children to sleep independently. I'm a big believer in flexibility – every family and culture is different – but I think understanding this little association is very helpful and can be a big clue for people to move forward.
Limit-Setting and Consistency
The other type is the limit-setting type, and they often mix together. In this one, instead of lots of waking, children struggle to fall asleep. Parents will say, "It's a nightmare getting this child to bed." There is screaming and shouting; they might be sick or very upset, and they are up and down the stairs, very unhappy about going to bed. The same happens at night waking, so the problems are at both ends.
The gambling phenomenon: We are all human, and children respond to consistency, but in real life it is hard to be consistent, especially if you are exhausted. We call this the gambling phenomenon – like old-fashioned fruit machines. If the third time you pull the handle, the money pours out, you're going to think it's fantastic and keep playing.
If a child is very unhappy about going to bed – and this is not an anxious or ill child, but a feisty, strong child who knows they can put up a good fight to get what they want – they're going to keep pushing that fight. They know if they keep pulling the handle – in other words, keep asking – they'll get what they want. That is so difficult for parents who are very tired, but consistency in approaching this is terribly important.
Research Findings on Sleep in Young Children
We did some research a few years ago with over 202 families across the country in Southampton and Sheffield. Some of you may have been involved. We were looking at sleep and breathing in infants and toddlers under two years.
Comparative study data: 140 families completed a questionnaire about sleep behaviours. We were able to compare them to a study conducted by a psychologist in the US who gathered data in the UK. We wanted UK children to compare to our group of children with Down syndrome. She had a group of 489 children where families answered the exact same questionnaire. We could match by gender and age and look at the differences. Parents told us about how their child slept and how they settled them to sleep at the beginning of the night and during night wakings.
Striking differences: We found some striking differences in children with Down syndrome. First, parents were much more likely to say they had sleep problems: 45% compared to 19% of the non-Down syndrome children. They were much more likely to snore, which was no big surprise because we know that is an issue.
Sleep loss statistics: The very shocking thing for me was that they had 55 minutes less sleep at night than their typically developing peers. Remember I was saying that at 45 minutes you see very big differences in children; 55 minutes is a big difference. They were shifting some of their nighttime sleep into the day with more naps, but even adding those in, they were still having almost 40 minutes less sleep in 24 hours. This was a real difference in total sleep time. They were approximately twice as likely to have problems settling to sleep.
Settling behaviours: So then there's the big "why" question. The study was observational, so we couldn't truly answer that in detail, but we could get some clues from the questionnaires. Parents of children with Down syndrome were more likely to bottle-feed their child to sleep (almost five times as likely) or to be rocking or holding them (almost six times as likely). They were also more likely to have a parent lying alongside them or to be in the parent's bed to settle. We put all that together and found parents were a bit more than four times more likely to be with their child at the point they settled.
Engagement in settling: In the non-Down syndrome group, about 25% of parents were still involved in settling because these are young children. However, it was much more striking in the children with Down syndrome. The received wisdom in medical literature is a bit of a simple interpretation: people think the biggest problem is sleep apnea, so surely all sleep problems are to do with that.
Snoring vs. settling behaviour: This study said something slightly different regarding why we were seeing shorter sleep. Remember that number of 40 minutes less sleep across 24 hours. We looked to see whether snoring explained the difference. Snoring didn't affect any aspects of sleep other than night waking, which you would expect.
Whether or not the mom or dad were there when the child settled to sleep explained later bedtimes, more frequent and longer night wakings, and shorter periods of uninterrupted sleep.
Impact on total sleep: We know now that the more consolidated sleep you have, the better your sleep is. Once we looked at this, it actually explained an hour less of sleep overall. If the parents were very engaged in the child's settling, those children had around an hour less sleep overall.
Causal direction: Is that chicken or egg? I talked about the sleep-onset association, and it sounds a bit like I'm pointing the finger of blame, doesn't it? But it could be the other way around: if you have a child who is inherently difficult to settle for some other reason, you're going to respond in a different way.
Individual temperaments: Quite often I see children where there are multiple siblings, and this particular child is different. All children have different personalities, temperaments, and needs, and that can drive the dance between the parent and child and how those behaviours play out in the night. So, we don't know that from this research. It wasn't designed to tell us that one way or another. But if we look at the other literature in typically developing children, we absolutely know that parent behaviour at bedtime will affect how a child settles and how a child manages their natural night wakings.
The magic skill of self-soothing: And we know as I've mentioned that all of those lovely strategies like rocking and very what I think of as effortful settling, working hard to get your child to sleep: they're very effective, they get the child to sleep, but the child hasn't learned that magic skill to self-soothe at night and struggles then when they wake up. And as I've said, all of these things sound very simple, but actually in real life it's more complex, isn't it?
Cultural and emotional factors: Because we all have our cultural norms, how you were settled as a child, the kind of routine that you had, your beliefs about your child. I think a powerful important belief is if you see your child as unwell or fragile, or if they are unwell, if you've had a child who's had a difficult first year of life, if they've had cardiac surgery, if you've had a difficult stressful time - it's damn difficult to switch the light off and say, "Night, night, I'm sorry, time for bed." Now that is very difficult to do: it's much more human and natural to want to cradle and rock your child. So these things are quite complex. And as I said, it'll depend on a child's temperament as well and they're all different, aren't they?
Independent impacts on sleep: And of course we know as well that children with Down syndrome are at more risk of things like autism spectrum disorder and problems like ADHD, and those things all have independent impacts on sleep and bedtime.
Next in segment four: what other interventions can improve sleep quality and quantity for children with Down syndrome? Professor Cathy Hill describes additional practical habits and approaches.
