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My Child with Cerebral Palsy Can’t Sleep

My Child with Cerebral Palsy Can’t Sleep

By Lee Vanderloop

I saw a cartoon in the newspaper the other day 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 usually lasts just a few months.

But what if it lasts much longer? 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? Parents with children who suffer from a neurological birth injury soon learn how that injury has impacted their child’s ability to sleep. For many, their child’s sleeplessness may be one of the first issues they discuss with the pediatrician.

 

Underlying Medical Issues

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

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 are:

  • 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. The test is usually conducted in a sleep lab at night, although it is possible to 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 is usually 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 have difficulty adapting to new environments, strangers and difficulty with touching, attaching electrodes is challenging. A 2010 study reported that children with disabilities can be helped through a sleep study with the aide of conditioning techniques .

 

Environmental Factors

After any underlying medical problem have been diagnosed and treated, parents can focus on 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 but you don’t stimulate 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. 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 for it and so dosages may change. 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. Examples of some of the medication options mentioned are:

  • Klonopin – Klonopin is the trade name for clonazepam, which works by calming brain waves and nerves. However, some studies have discouraged use of this class of medications in those with traumatic brain injury. See  PubMed Abstract of 2010 study by the Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Chicago Illinois
  • Clonodine –  A2005 study conducted in the UK reports improvements in the sleep patterns of children with neurological and developmental disorders following the use of Clonidine. While many studies have been conducted in relation to Clonodine for sleep disorders in children with ADHD, few can be found dealing with children with moderate to severe neurological and developmental disabilities.
  • 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 rated melatonin as likely effective for “sleeping problems in children with autism and mental retardation.” Also, see  “Melatonin for Treatment of Sleep Disorders at the Department of Health & Human Services, Agency for Healthcare Research and Quality.
  • 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 night time sleeplessness.

 

More About Sleep Disorders

Sleep disorders are a common problem in children with cerebral palsy as well as Alzheimer’s disease, stroke, cancer, and head injury. 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.

Many parts of the brain play an important role in the process of sleep. Damage to cerebral pathways, the mid brain or cerebral cortex can all impact a child’s ability to sleep. My own daughter with severe global brain injury has never established a routine sleep-wake pattern.

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.

According to a study conducted in Ireland, among children with cerebral palsy, sleep disorders are more prevalent in children with spastic quadriplegia, those with dyskinetic CP, and those with severe visual impairment. Both medical and environmental factors seem to contribute to the increased frequency of chronic sleep disorders in children with CP.

 

Why Sleep is Important

We all know sleep is important. People become quickly disoriented for lack of sleep. We simply don’t function without sleep. 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.
  • A study involving rats showed that certain nerve-signaling patterns that the rats generated during the day were repeated during deep sleep. This pattern repetition may help encode memories and improve learning.

 

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. They 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 begins with signals from an area at the base of the brain called the pons (illustration). 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.

 

Conclusion

Each child is unique and may suffer from sleeplessness for different reasons. Determining why your CP child is having problems sleeping and learning what you can do about it are the first steps to a good night’s sleep for the whole family.

 

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5 Responses to “My Child with Cerebral Palsy Can’t Sleep”

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  2. BRILLIANT!!! We moved our baby son to a crib beside our bed a few months ago, which doesn’t keep him from ninja-ing into our bed every sunrise just to keep up the practice of some of his old co-sleeping styles. He particularly enjoys bed-torturing his daddy.

  3. Tired Momma says:

    This was great!! My child is seven and suffers from CP on the fairly sever end of the spectrum. Sleeplessness is something that our family has endured nearly his entire life (including two births of two younger siblings). Billy is quite loud when he is awake and we call it his ‘partying’ time as he screeches and laughs in his room. All in good fun for a night here and there, but as two nights ran into three and three into five and so on, our family needed relief. Bill is non-verbal so his reason for waking is kinda trial and error. I thought maybe it was just a diaper change he needed at first~nope. Bill is tube fed, so we tried adjusting feeds. Night feeds seem to help a little and rules out hunger waking him. We began melatonin early on to help GET him to sleep but it doesn’t KEEP him sawing logs. We tried antihistamines also, which even at high doses didn’t phase his party modes. His antiseizure meds (and others) have side effects that include drowsiness, yet to no avail. Time for something a little more intense I think… hate to but I think its better for his health (seizures, low/no weight gain etc) and for his parents sanity ;)

  4. Getting enough sleep training for my twins was one of the smartest things I could have done for both of us.

  5. Quintin says:

    My daughter, Avery, is 3 and since her discharge from the NICU (a five month stay) she has never developed a real sleep pattern. She used to at least work on a cycle where she would go for about a month of not sleeping at all during the night, then about a month of sleeping from about 6PM until about 2AM, then about two weeks of sleeping through the night. However, her cycle has changed as she’s grown older. The “vampire” and “evening shift” phases got longer and the “working” phase got shorter. The one ray of sunshine was always her wonderful disposition. She was almost always happy when she was awake, seldom crying. But that has changed since the procedure to place her G-Tube (November 15, 2013). Now there seems to be only one phase-the torture phase, for instead of being happy and being up all night she now screams incessantly for hours.

    Since she was 2 we have had her on melatonin and all of her seizure medications (Lamictal, Keppra, and Valproic Acid) list drowsiness as a side effect. We’ve even introduced Valerian Root. But she simply doesn’t sleep until the early morning hours and then she sleeps all day thus missing all of her therapy sessions. I know, I know, just don’t let her sleep during the day, right? Doctors have suggested that numerous times. The problem is that she simply won’t wake up during the daylight hours. We’ve taken her to appointments in the freezing cold of winter, stopping to buy groceries on the way home, and she hasn’t woken up. As I type this, at 5AM, she is finally beginning to doze off. I began typing at 3:30 after taking over for my wife at 2:00. Avery’s nap last night was from 10:00 until 1:00.

    None of her doctors want to prescribe sleep medications due to the possible side effects and potential complications due to mixing them with her seizure medications and sleep studies have proven useless as they won’t conduct them during the day. There doesn’t seem to be any relief at all. If there are any other suggestions, please do tell.