By Lee Vander Loop
CP Family Network Editor

I once saw a cartoon in the newspaper that featured a conversation between a sleep-deprived mom and dad arguing over who should get up for the 3 a.m. feeding. It was a reminder that sleeplessness is an inevitable part of parenting a newborn that most, at least when they’re past it, can take lightly, since it usually lasts a few months.

But what if it doesn’t? What if, after six or seven months, a child doesn’t show signs of ever being able to sleep more than a few hours? What does a parent do then? As the parent of a special needs child who experienced a sleep disorder, I know firsthand the detrimental impact extended sleepless nights can have on not only the child, but the caregivers and family unit as a whole. For many parents, their child’s sleeplessness may be one of the first issues they discuss with their pediatrician.

Sleep disorders are a common problem in children with cerebral palsy (CP). These sleeping problems may arise from changes in the brain regions and neurotransmitters that control sleep, or from the medications used to control symptoms of other disorders.

In a recent study, researchers concluded that children with cerebral palsy are more likely to have a sleep issue than their peers who are developing more typically. Also, the sleep problems experienced by non-ambulatory children with CP tend to be more severe.

Underlying Medical Issues

First and foremost, determine whether your child’s sleeplessness is being caused by other factors such as sleep apnea, reflux, or seizures. Many children experience sleeplessness as a result of environmental, auditory, or dietary factors in their lives. You should discuss these possibilities with your child’s pediatrician as soon as possible.

Getting A Diagnosis

Your child should be seen for evaluation, testing, and treatment by a child neurologist or neurodevelopmental specialist, and possibly a behavioral psychologist experienced in sleep disorders. Many large teaching hospitals and specialty hospitals have sleep disorder clinics with trained medical and psychological staff that can assess and help in the treatment and management of a child’s sleep disorder. Some of the more common tests include:

• Polysomnograms (PSG): The PSG monitors many body functions, including brain (EEG), eye movements (EOG), muscle activity or skeletal muscle activation (EMG), heart rhythm (ECG), breathing functions and peripheral pulse oximetry. It is usually conducted in a sleep lab at night, although it is possible to also do it in the home setting. It involves attaching electrodes to the patient and monitoring for several hours over several days.
• Multiple Sleep Latency Test (MSLT): This is a daytime study usually conducted the day after a formal nighttime sleep study has been conducted. The study measures how long it takes for a child to enter a sleep state after he or she begins napping. The test usually is conducted in a sleep lab.
• Actigraphy: An “actigraph” is a small, wristwatch-sized device that records movement and is often attached to the wrist or ankle. The actigraph records an “actigraphy” report, which is usually taken over a period of weeks to establish the pattern of sleep and wakefulness. Often used in conjunction with a sleep diary, actigraphy in children can provide additional information about their sleep.
• Overnight EEG with video monitoring: This test is used to determine if a child may be suffering from epileptic or other seizures at night. Because children with disabilities often struggle with adapting to new environments and/or strangers and experience difficulty with touching, attaching electrodes can be challenging. Studies have found that children with disabilities can be helped through a sleep study with the aid of music therapy and a variety of behavioral interventions and conditioning techniques.

Environmental Factors

After any underlying medical problems have been diagnosed and treated, parents can incorporate other healthy sleep techniques. These include:

• Establishing a “bedtime routine” such as a warm bath, rocking, calming music, or a story.
• Ensuring quiet. Many children with neurological disorders and sleep disorders are light sleepers and awaken at the slightest stimulation.
• For infants, swaddling, or tightly wrapping in a blanket, may be calming.
• Not intervening too quickly if the child wakes up crying. Children may be able to learn self-soothing techniques if allowed to do so. If your child is simply cooing or talking and entertaining themselves, don’t interfere.
• Use a baby monitor so you know what’s happening without stimulating your baby with your presence.

Medications

Medications can also influence sleep, so be sure to explore this with your physician. Pharmacists are also wonderful resources for information about drug side effects and interactions. If your doctor prescribes a medication, be sure to ask about side effects and alternatives should one not work. Also be aware that some medicines will only work for a short period of time before your child develops a tolerance that requires a change in dosage. Other medications may carry a risk of dependence.

In my research I’ve read of parents using a variety of medications, some with more success than others. An example of some of the medication options mentioned are:

• Clonidine: Clinically, clonidine is often used in the setting of poor sleep in children with neurodevelopmental disorders, particularly those who have associated behavioral symptoms. A PubMed Abstract of a 2005 study conducted in the UK reports improvements in the sleep patterns of children with neurological and developmental disorders following the use of clonidine. Although safe for many, caution should be exercised when using clonidine, especially in those children taking other CNS-depressing medications.
• Melatonin: According to MedlinePlus, melatonin is a hormone produced by the pineal gland in the brain that regulates our sleep-wake cycle. Clinical data suggests that melatonin is a commonly prescribed drug for disturbed sleep in children with neurodevelopmental disabilities. Melatonin used as medicine is usually made synthetically in a laboratory. It is most commonly available in pill form, but melatonin is also available in forms that can be placed in the cheek or under the tongue. This allows the melatonin to be absorbed directly into the body. People use melatonin to adjust the body’s internal clock. It is used for jet lag, for adjusting sleep-wake cycles in people whose daily work schedule changes (shift-work disorder), and for helping blind people establish a day and night cycle. The Natural Medicines Comprehensive Database that rates effectiveness based on scientific evidence rated melatonin as likely effective for “sleeping problems in children with autism and mental retardation.
• Acupuncture – Some parents have tried alternative medications such as acupuncture which seemed to provide immediate, short term influence but nothing long lasting that had any impact on chronic nighttime sleeplessness.

More About Sleep

There are two basic types of sleep—rapid eye movement (REM) sleep and non-REM sleep (which has three different stages). Each is linked to specific brain waves and neuronal activity. Damage to cerebral pathways, the midbrain, or cerebral cortex can all impact a child’s ability to sleep. A deeper understanding of sleep disorders in general can be found in Brain Basics: Understanding Sleep by the National Institute of Neurological Disorders and Stroke.

Why Sleep is Important
We all know sleep is important. People become quickly disoriented from lack of sleep. We simply don’t function without it. Why? Here’s what the experts believe:

• Sleep gives neurons used while we are awake a chance to shut down and repair themselves. Without sleep, neurons may become so depleted in energy or so polluted with byproducts of normal cellular activity that they begin to malfunction.
• Sleep allows the brain a chance to exercise important neuronal connections that might otherwise deteriorate from lack of activity.
• Deep sleep coincides with the release of growth hormone in children and young adults. Many of the body’s cells also show increased production and reduced breakdown of proteins during deep sleep. Since proteins are the building blocks needed for cell growth and for repair of damage from factors like stress and ultraviolet rays, deep sleep may truly be “beauty sleep.”
• Activity in parts of the brain that control emotions, decision-making, and social interactions is drastically reduced during deep sleep, suggesting that this type of sleep may help people maintain peak emotional and social functioning while they are awake.
• Research demonstrates that sleep deficiency can have a significant negative impact on children with cerebral palsy. Not only are sleep deprived children at risk of developing or exacerbating other physical and emotional health problems but so are other members of the family, who themselves become sleep deprived consequent to caregiving roles and additional family pressures.

The Importance of REM Sleep

Only after 1953, when researchers first described REM in sleeping infants did scientists begin to carefully study sleep and dreaming. In their studies, scientists discovered that we typically spend more than two hours each night dreaming, and soon realized that the strange, illogical experiences we call dreams almost always occur during REM sleep. While most mammals and birds show signs of REM sleep, reptiles and other cold-blooded animals do not.

REM sleep first occurs about 90 minutes after falling asleep. REM sleep begins with signals from an area at the base of the brain called the pons. These signals travel to a brain region called the thalamus, which relays them to the cerebral cortex—the outer layer of the brain that is responsible for learning, thinking, and organizing information. The pons also sends signals that shut off neurons in the spinal cord, causing temporary paralysis of the limb muscles. If something interferes with this paralysis, people will begin to physically “act out” their dreams – a rare, dangerous problem called REM sleep behavior disorder.

A study using EEG tests, that investigated sleep disorders in children with cerebral palsy, showed abnormalities that included the absence of characteristics of NREM (non-rapid eye movement) sleep and REM sleep. There was also noted a high percentage of early awakenings after sleep onset.

Don’t Give Up

If your child suffers from a sleep disorder, consult with your child’s physician. Don’t be afraid to ask questions or request a referral to a specialist. It may take time to find the right treatment or combination of treatments that will give your child relief, but relief is out there.