There is not a single “right” answer for how your family can start to improve your child’s sleep health. Don’t feel pressured to have to do exactly this or that. What is more important is that you are open to making small changes, and doing everything consistently.
Here are the top 10 strategies that other families have shared with us:
1) Wake up time is far more important than bedtime: If you can only implement one change, do this: wake up your child as close to the same time as possible every single day. Wake up time is so much more important than bedtime, which is when many families try to be consistent. Think about a
common issue for school-aged children. They might wake up at very different times during the school week compared to the weekend because they are trying to catch up on missed sleep during weekdays by sleeping in on weekends. This rollercoaster ride leads children to feeling worse. By waking them up at a consistent time, what you wind up doing is “start the clock” on when they will be ready to sleep again the next day.
common issue for school-aged children. They might wake up at very different times during the school week compared to the weekend because they are trying to catch up on missed sleep during weekdays by sleeping in on weekends. This rollercoaster ride leads children to feeling worse. By waking them up at a consistent time, what you wind up doing is “start the clock” on when they will be ready to sleep again the next day.
Example: Think about when you have lunch and dinner; for example, let’s say you usually eat lunch around noon and have dinner around 6:30pm. Consider lunch at noon a reset on your “hunger timer” for when you’re ready to eat again. It’s about 6.5 hours later, or when you have dinner. Now what if you have a very busy day and wind up having lunch at 3pm. Do you think you will be hungry for dinner at 6:30pm? Probably not. This same thing happens if your child wakes up at 7am for school on Friday, and then noon on a Saturday. It confuses their body about when they should be ready for sleep, and so they are likely to struggle to fall asleep at the “right” time on Sunday night.
2) A predictable pattern: During maintenance therapy, families often told us that there was a predictable pattern to their child’s poor sleep. Disrupted sleep in the 2-5 days after steroids (dexamethasone) is a given. For some, this means they are drowsier than normal. For others, this means they can’t sleep at night and need to take a daytime nap.
Pro tips: If your child needs to nap, try to keep it short (less than 30 minutes) so it does not mess up their sleep at night too much. Pack your patience when they are irritable. If they want you to share a bedroom/bed with them, keep it limited to the first week.
3) Plan ahead: As one family said, “decide before your deadline.” Instead of waiting until the last minute, families found it helpful to prepare as much as they could in advance. For example, if you are expecting your child to sleep poorly during their steroid pulse week, don’t schedule more activities than necessary during this time period to reduce their fatigue.
4) Comfort goes a long way: Your child can feel uncomfortable in their own skin during certain phases of treatment. Giving them as much comfort as possible in their bedroom can really help. Families spoke of washing pillowcases and blankets in the day or two before a treatment cycle. Talk with your child to understand what makes them feel safe and comfortable at night, and do your best to create that environment as consistently as possible.
5) Spending less time in bed may be the solution: If you are finding that your child is taking a long time to fall asleep, or may be awake an extended period of time in the middle of the night, it is possible that they are spending too much time in bed on average. Remember that not every child needs the same amount of sleep: There is a wide range of sleep duration for children.
Pro tips: Here’s an experiment to figure out how much time your child should spend in bed. For 5 days or so, put them to bed at their usual bedtime and maintain a consistent wake-up time. If you don’t have a typical bedtime, then pick a time that feels reasonable to your family. Stick to this bedtime and wake up time and keep track of how things go on a sleep diary. If they are repeatedly falling asleep in less than 10 to 20 minutes after going to bed, wake up no more than a couple of times at night and fall back to sleep quickly, and wake up feeling refreshed in the morning, then you are probably at the right sleep duration already! If this is not the case, rather than giving them MORE sleep opportunity, you actually want to give them LESS. While this may seem very counterintuitive at first (my child isn’t feeling good when they wake up, so I want them to get more sleep!), it makes a lot of sense—getting them more sleep has come at the cost of their sleep quality, because it is hard to fall asleep or stay asleep. By interrupting, or fragmenting, their sleep, it has reduced the quality of their sleep to the point that more of it does not feel restorative.
After 5 days of their normal bedtime, delay their bedtime by 30 minutes while keeping the wake-up time the same. Stick to this plan for 5 more days. On the diary, it is likely that you will start to see that your child is taking less time to fall asleep or staying awake for less time at night. After 5 days of this, delay their bedtime by another 30 minutes. Eventually, your family will find a “sweet spot.” On most nights of the week, your child should be falling asleep in 10-20 minutes, and when they wake up at night, are able to fall back to sleep in under 15 minutes, and are waking up in the morning feeling better.
6) Have realistic expectations: It is not reasonable to expect a child to jump out of bed each morning full of energy and excited to go to school. Your family’s goal should be for them to wake up recharged and capable of staying awake and paying attention in school, and not needing to come home and take a nap every day. This is especially true for some children who may be struggling with depression or during certain treatment phases. Not feeling energetic upon waking may be because of these other challenges, and not their sleep.
7) Don’t feel guilty about needing sleep yourself: If you have ever flown on an airplane before, you may remember what is explained during the pre-flight announcement. During an emergency, you are supposed to put on your mask first, before helping others. If you are severely sleep deprived as the parent, you may struggle to help your child. Ask your partner, or other family members for help every now and then. It is okay to take a day off to recharge your own batteries so that you can come back stronger.
8) Sleeping together with your child can eventually become a problem: Almost every parent we spoke with mentioned that at some point during their child’s leukemia treatment, they shared a bed with them in the hospital or at home. However, they also let us know that at some point, it became a problem either for the parent (whose sleep quality was compromised), or the child (who were afraid of going to sleepovers with friends, or sleepaway camps).
Pro tips: You can implement a tool that you may have used with your child when they were younger: what’s professionally called “graduated extinction.” This technique typically involves a gradual withdrawal of parental assistance at bedtime or during the night. They key is consistency. Start by delaying their bedtime about 30 minutes or so beyond their typical time. Then, put them to bed independently, and assure them that you will set a timer and be back to check on them after a set interval of time. Each check-in should be brief (less than 1 minute): a simple “Hi, I’m still up, good night” will suffice. Avoid extended physical contact as that will likely make separation even harder. Something like a pat on the forehead is fine. Parents should then wait a longer period for their second check-in, and an even longer for their third check-in. On every subsequent night, the initial waiting period before that first and all subsequent check-ins should be increased. It is important for all families to know that there is not a magical period of time between check-ins, so discuss this with your partner, and be prepared for some tears that can last for 1-2 weeks.
9) Over-the-counter solutions aren’t always solutions: When their child is struggling, parents can turn to over-the-counter products, such as melatonin. While the scientific data for melatonin is not strong in terms of helping children fall asleep and stay asleep consistently, it can have a very real placebo effect for children and their families. If your child is doing better with melatonin, keep in mind that lower doses are typically recommended (1-3 mg), and that the purity of these over-the-counter supplements are not regulated.
