Several times a month I meet a very distraught parent for the first time with the complaint “my child just doesn’t sleep”. They are always accompanied by a child that is conscious and breathing. I reply that their child must be sleeping because if the child wasn’t sleeping at all they would be dead within two weeks. That comment is not usually well received but I feel it is an important point to make. I follow up that statement with a question of my own to the parent which is “If I came in the room and told you that I have not been breathing the last two weeks would you believe me?” Most of the time I receive an answer like “of course not”. I then ask why and they reply “because you would be dead.” Both breathing and sleep are essential human functions for life. WIthout them we die. The good news is that these two functions are not optional. Humans cannot hold their breath until they die. At worst you will pass out and start breathing again. Humans cannot sleep deprive themselves until they die. You will fall asleep standing up before that happens.
I don’t want to alarm you but there are in fact very rare disease states that are exceptions to the above paragraph. Congenital central hypoventilation is a disease state seen very rarely in newborns where they don’t breathe when they fall asleep. Fatal familial insomnia is a rare, lethal neurodegenerative disorder that causes terminal insomnia. Congenital central hypoventilation is diagnosed way before children get to my office and fatal familial insomnia is a disease of adults. These are not relevant to patient’s being seen in an outpatient pediatric setting.
There are clear differences in sleep between children with Down’s Syndrome and children who are developmentally normal. There is a well described association between Down’s Syndrome and sleep apnea. The association was first described in the late 1980’s. There are several explanations for this association unique to Down’s Syndrome including low muscle tone in patients with Down’s Syndrome and also consistent craniofacial features of Down’s Syndrome. Children with Down’s Syndrome can also possess risk factors for sleep disordered breathing which are not unique to Down’s Syndrome such as tonsillar enlargement, obesity and heart disease. Despite the increase in baseline risk for sleep apnea in children with Down’s Syndrome not all children with Down’s Syndrome have it. The estimated prevalence for sleep apnea in children with Down’s Syndrome is anywhere between 25% and 75%. This is clearly increased related to the general pediatric population where the prevalence is around 2%. The variation for the reported prevalence is due to the fact there has been an absence of a standardized definition of pediatric sleep apnea.
This association between Down’s Syndrome and sleep apnea complicates drawing conclusions between Down’s Syndrome and other sleep abnormalities. Sleep apnea makes sleep architecture abnormal. Patients with sleep apnea experience more arousals, more movements and decreased proportions of REM sleep. Any research on sleep architecture in children with Down’s Syndrome done in before the late 1980’s that did not control for sleep apnea is of limited value. Any study since that describes sleep architecture in children with Down’s Syndrome that does not control for sleep apnea is of limited value. Unfortunately that leaves very little data from which to draw conclusions.
There are a few conclusions that can be drawn despite this lack of control. There are several studies to support that circadian rhythms are intact in children with Down’s Syndrome. These studies were designed comparing children with Down’s Syndrome to healthy controls. The studies used measures of movement and also hormone secretion. This suggests children with Down’s Syndrome can have normal sleep wake patterns when underlying sleep disorders are addressed.
I personally do not approach pediatric sleep patients with Down’s Syndrome any differently than pediatric patient’s without Down’s Syndrome with the exception of having a high index of suspicion of sleep apnea. Once sleep apnea is ruled out my advice is the same regardless of the complaint. Other sleep disorders such as narcolepsy, sleep related seizures, or a movement disorder need to be considered. While neuropsychiatric disorders such as autism, anxiety, post traumatic stress disorder, etc. will have sleep manifestations they are not considered primary sleep disorders and treatment should focus on the underlying disorder. Unfortunately pharmacologic treatments for these disorders often have adverse effects on sleep. Psychiatric medications can be sedating and thus cause sleepiness, or stimulating prevent sleep. If your child is on a medication that affects sleep you are stuck between a rock and a hard spot. You will have to work with the healthcare provider to find a balance between effect and side effect.
For some reason parents seem to put all of their focus on when children go to sleep. If children don’t go to sleep on command they conclude there is a problem. If a child does not go to sleep when the parent wants it creates anxiety for the parent and this is often communicated to the child. The parent gets upset, the child gets upset and no one sleeps. There are a few things in life you cannot force your child to do. One of them is sleep. If you try and force your child to sleep you are guaranteeing yourself failure. Sleep Tip #1: Do not focus on when your child sleeps. Focus on when they stay awake. The longer a human is awake, the more likely they are to fall asleep and stay asleep. It is just how the brain works. If you do not feel your child is sleeping well at night do not let them sleep during the day. Conversely, if your child must sleep during the day make their bedtime later. It is abnormal for school aged children to nap during the day. In fact if they need to nap they are either sleep deprived or they have a sleep disorder.
The human brain is designed to sleep at night and be awake during the day. The human brain is very influenced by light. While you cannot control the sun and the moon most households have direct light sources that influence sleep. Direct light sources are lights that you look into such as televisions, computers and cell phones. Tip #2: Do not let your child use a direct light source within 90 minutes of bed time.Using a direct light source within 90 minutes of bed can delay sleep onset. Teenagers seem to be the most susceptible. Likewise, if you want to promote an earlier bed time expose your child to a bright light (sunlight is the best) soon after they wake up.
The third major sleep promoter is the amount of physical activity your child has during the preceding wake period. Tip #3: Keep your child as physically active during the day as possible. Studies have shown the more “screen time” children have during the day, the poorer their sleep quality is. Physical activity is best earlier in the day. I would discourage intense physical activity within 2 hours of bed time but plenty of children that are physically active all day can get in bed and fall asleep soon after.
If a child that stays awake all day, is physically active during the day, avoids sleep preventers (medicines, lights, noise, etc,) and is unable to sleep, then it would be a good idea to see a pediatric sleep specialist.