Your child’s primary physician can assess causes and recommend interventions. An otolaryngologist (ENT) 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 consider treatment strategies when sleep remains a chronic problem.
Not Enough Sleep
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Many children experience disrupted night sleep or insomnia (inability to sleep). Sleep involves complex brain pathways that shut off and turn on the state of being awake. These pathways can be altered in children with SNI. Sleep is also regulated by light-induced signals that turn off melatonin production. Melatonin production increases when it is dark and causes drowsiness. Poor sleep may worsen behaviors, seizures, pain and other symptoms. These problems can also make sleep issues worse, and it can become a difficult cycle to resolve. But sleep can also be affected by issues like enlarged adenoids or tonsils and, if so, will likely improve upon treatment.
Any medical problem that interferes with comfort will disrupt sleep. Therefore, improvement in sleep often starts with addressing pre-existing issues or conditions that commonly worsen sleep. Your medical team may explore issues such as enlarged tonsils or adenoids, GERD aspiration, GI pain, chronic pain, or obstructive sleep apnea.
Medications can influence sleep. Medications used to treat pain, autonomic dysfunction, spasticity and psychiatric conditions often have the side effect of sedation, and in some cases may be increased to encourage sleep. Some medications, including some used to treat seizures, can cause hyperactivity and result in sleeplessness.
If your child has nocturnal seizures, they may fear falling asleep, and may resist sleep as a way to avoid a seizure.
Light and dark are factors that affect sleep. Our biological clock regulates the body’s natural production of melatonin, a hormone released by the pineal gland at night. The biological clock is primarily regulated by light. Increasing exposure to daytime light, either naturally or by use of a special light lamp, may encourage melatonin production and improve sleep. Your medical team may suggest adding a melatonin supplement. The biological clock can also be influenced by routine. A routine that engages the five senses may cue the brain to the fact that it is time for sleep.
External factors can interfere with sleep as well. You may find that your child’s sleep patterns have been disrupted during a hospital stay, especially if they struggled with delirium during the admission.
If sleeplessness continues after consideration of these more common causes, the medical team may suggest a sleep study to assess other possible causes of sleep disruption, including seizures, obstructive sleep apnea or restless leg syndrome.
As the medical team works with you to improve sleep in your child, knowing ways to keep your child safe and comfortable will help your family endure sleepless periods. Your child’s team, including physical and occupational therapists, can work with you to discuss safety-related home modifications and recommend good video or sound monitors. They can also help you consider options like a safety bed. Reimbursement from insurance for these modifications is typically hard to get, but it is worth the effort to try. Requests will certainly require a letter from a clinician.
As with so many things related to the brain, sleep disruption can be a complicated puzzle. Be prepared for a trial-and-error period as you and your medical team determine what may be causing disrupted sleep and consider trade-offs; for example, possible side effects of using medications to regulate sleep.
Sleep issues in your child can affect their and your physical and emotional well-being–and that of other family members as well. Lack of sleep can have negative consequences on your health, your ability to care for your family, and your ability to carry out your other responsibilities. It is not unusual for parents of children with SNI, and other members of the household, to experience symptoms of chronic sleep deprivation (for example, tiredness, weight gain, depression, lack of stamina, and decreased productivity). Be aware of these consequences and have compassion for yourself and others as you try to navigate them.
Sharing your child’s (and your) lack of sleep with those in your support circle (friends, your employer, your childrens’ teachers), can be helpful in creating understanding. However, in truth, any help will likely never feel like enough.
There are options for respite available to you with some research. The impact of your child’s poor sleep may be the medical indication needed to qualify for respite assessment. A respite house may not be easy to locate, but can help your entire household cope. A social worker may be able to assist you with this. Friends also can watch your child while you sleep, if you are comfortable with this. And as with so many other aspects of parenting, other families can be a great source of tips, strategies and treatments that have helped.
