Your child’s primary physician can assess causes of increased sleep. An otolaryngologist (ENT) and/or pulmonologist will assess if issues in the ears, nose, throat, or airway are affecting sleep. An ophthalmologist will consider your child’s light perception. A physical medicine and rehabilitation specialist will consider spasticity. A neurologist or sleep specialist can recommend medications and strategies. Complex care and palliative care clinicians can bring expertise when there are no easy answers.
Too Much Sleep
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Sometimes children show us that they are sick or in pain by sleeping more. Or it may be that your child’s medications to treat other issues are causing an increase in sleep, and so these medications may need adjustment. Children with SNI can have changes in how the brain regulates sleep-wake cycles and may experience sleepiness that increases gradually or occurs intermittently. At other times, increased sleep is part of ongoing decline as the child’s condition progresses.
Children with SNI can sometimes have changes in how the brain regulates sleep and wake time, resulting in severely altered sleep patterns and periods of either too much or too little sleep. Changes in the brain can make it challenging to improve the sleep cycle. Here are two possible explanations for how altered brain pathways affect sleep:
- There may be an episode during the day when it is difficult to wake your child and they have low muscle tone. This may especially occur during non-REM stage 3 sleep, which is the deepest period of sleep. The child may suddenly wake when the sleep cycle has ended.
- Children with altered sleep caused by changes in the brain pathways may also experience low body temperature and low thyroid hormone production. These symptoms are not the cause of excessive sleep. Rather, the sleep-wake pathways cross the area of the brain that regulates body temperature and hormone production, making it possible that some symptoms will occur simultaneously.
A person’s biological clock regulates the production of melatonin and how much and when melatonin is released in the body can alter sleep. The clock is primarily regulated by light, and there may be helpful interventions using light during typical waking hours that will encourage nighttime sleep and increase daytime wakefulness.
If increased sleep becomes an ongoing concern, the medical team will consider the possibility of medical causes. Medications can cause increased sedation, something to consider if a new medication was recently added. Pain can alter sleep patterns, causing wakefulness or increased sleep (maybe both). Sometimes when the pain is resolved or treated, a child may simply need to catch up on missed sleep. It is also possible that poor sleep at night will result in increased sleep during the day. See link to Sleep – Not Enough.
It is the natural parental instinct to be concerned about too much sleep. You may worry that an illness or infection or overmedication or seizure activity is causing your child to be drowsy or tired. You may worry that the sleep is causing your child to miss out on opportunities and interactions at school and home. Sharing your concerns with your medical team, your child’s teachers and your caregivers can help you consider strategies for limiting daytime sleeping, and ways to make the most of the time your child is awake and interactive.
You may wonder if increased sleeping is an indication that your child’s condition is progressing. Share your questions with your care team. A shift in your child’s baseline always requires a period of re-orienting to the new “normal.” Palliative or complex care teams can help you understand and adapt to changes in sleep that suggest a decline in your child, and prepare you for what might be coming in the future.
Whatever the reasons for your child’s increased sleepiness–medication, illness progression, anxiety or something else–it may be helpful to discuss the importance of having wakeful periods and the tradeoffs between controlling symptoms and allowing periods of wakefulness.