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Sleep Problems Rebecca Stores Abstract - Children’s sleep problems are a common cause of considerable stress in both families with and without a child with Down syndrome. In addition, they are often overlooked by health professionals and effective advice on how to deal with them is not always forthcoming. This article describes the importance of sleep problems both for the child and other family members, outlines the wide range of sleep problems which exist and the most effective ways of dealing with them. Towards the end of the article, readers will be informed of the research we have been carrying out at The Sarah Duffen Centre and the main findings which have emerged from this. Keywords - Down Syndrome, Sleep, Behaviour, Children You don’t have to talk to many parents to realise that children’s sleep problems are a common cause of considerable stress in both families with and without a child with Down syndrome. In addition, they are often overlooked by health professionals and effective advice on how to deal with them is not always forthcoming. This article describes the importance of sleep problems both for the child and other family members, outlines the wide range of sleep problems which exist and the most effective ways of dealing with them. Towards the end of the article, readers will be informed of the research we have been carrying out at The Sarah Duffen Centre and the main findings which have emerged from this. Prevalence of sleep problems A wide range of sleep problems exist and these will be described later. However, among the most common problems are difficulties settling children to sleep and repeated waking during the night with children demanding their parents attention. Frequent settling problems have been reported to occur in approximately 20 per cent of one to two year olds in the general population and frequent night waking in 26 per cent. However common such problems are in children in the general population, they appear to be even more common in children with Down syndrome or other learning disability. In addition, there is evidence to suggest that they are more likely to persist if not managed at an early age. One study carried out in Kent found that out of 200 children aged up to 18 years with severe learning disabilities (including some children with Down syndrome) 51 per cent were said by their mothers to have settling difficulties and 67 per cent showed night waking problems at least a few times a week. When the children were followed up four years later, 48 per cent of children with settling problems still had problems as did 66 per cent of the children with night waking. In addition, 21 per cent of children had developed sleep problems which were not originally present. However, none of the families had received any advice on managing the sleep problems. Effects of sleep problems on the child Research has shown that sleep problems are often associated with a range of undesirable factors. Children with sleep problems are more likely to have behaviour problems than children without sleep problems. Sometimes the sleep problems are part of a more general behaviour disturbance in the child. As with any of us, if a child is not getting enough sleep at night, this is likely to have a detrimental effect on their functioning the next day. Other consequences of sleep disruption in children include daytime irritability, hyperactivity, aggression, learning problems, reduced attention and concentration. These effects are even more important if present in a child with a learning disability as they may add significantly to the level of delay already experienced and may also be misconstrued as part of the child’s condition or a child just being “difficult”. Effects of sleep problems on the family In addition to the detrimental effects on the child, having a child with a sleep problem is likely to have a disruptive effect on the sleep of his or her parents and other family members. It has been reported that mothers of children with a sleep problem report higher stress levels, increased irritability, poorer marital relationships and more negative attitudes towards their partners, their child and themselves. As the presence of a learning disabled child in families may be expected to cause more stress anyway, the additional problems of sleep difficulties appears to add significantly to parents’ burden of care. Such factors make effective management of the sleep problem essential. Types of sleep problems Virtually all childhood sleep disorders which occur in the general population can occur in children with Down syndrome and children with other learning disabilities. There are no sleep disorders which are specific to such children. However, as will be described later, children with Down syndrome may be particularly prone to developing certain types of sleep disorders. Some sleep problems have a physical cause, other have a psychological cause. Some are more likely to occur at certain ages, such as infantile colic, whereas others may appear during childhood and then persist throughout most of the individual’s life if treatment is not provided. In the following sections, childhood sleep disorders are described under the following headings: problems associated with sleeplessness, excessive daytime sleepiness, circadian rhythm disorders, night time attacks (parasomnias) and sleep related breathing disorders. Approaches to management are described later. Problems associated with sleeplessness Problems associated with sleeplessness are among the most common sleep problems in children, including those with Down syndrome. Some of these were mentioned earlier. They include difficulty in settling the child to sleep, repeated night time waking with demands for parental attention, early morning waking and persistent short duration sleep. Possible factors which bring about these disorders are numerous and may vary from child to child. In some cases, a child may have challenging behaviour and the night time problems are just another feature of the problem. In other cases, the presence of a physical or medical disorder such as otitis media or other painful conditions may disturb sleep. More commonly, the settling and night waking problems develop as a result of the child never having learnt to fall asleep without their parents being present. Therefore, when the child awakens during the night, he or she is unable to re-settle himself or herself and demands the parents’ attention. In the pre-school or school aged child, parents’ unwillingness to establish and consistently enforce rules for going to bed, or staying in bed during the night, can lead to irregular sleep patterns and night time disturbances. In older children, bad sleeping habits and inadequate sleep hygiene (described later) may lead to sleeping difficulties. Emotional upset, stress and worry may also cause sleep disturbance. Excessive daytime sleepiness Excessive daytime sleepiness can have considerable psychological and social effects on any individual. It is rarely seen as a medical problem by parents or professionals, and symptoms may be misinterpreted as laziness, disinterest or lack of motivation. In addition, sleepiness in children can manifest itself quite differently to sleepiness in adults causing a variety of undesirable behaviours such as irritability, aggression, poor concentration and attention and hyperactivity. Such problems may be wrongly attributed to causes other than sleeplessness, especially in children with learning difficulties. Excessive daytime sleepiness may be the result of insufficient sleep (caused by any of the disorders of sleeplessness described earlier) or it may be the result of more specific sleep disorders which have an intrinsic, physical origin. One such disorder, obstructive sleep apnoea syndrome, is of particular relevance to children with Down syndrome. This is described later. Circadian rhythm sleep disorders These occur when there is a shift in the individual’s sleep phase so that they are unable to sleep at a socially acceptable time. Delayed sleep phase syndrome is one of the most common sleep-wake rhythm disorders. Here, the individual is physiologically unable to fall asleep until the early hours of the morning and does not wake up until the afternoon of the next day if given the chance. As the individual usually has to get up for school before their sleep requirements have been met, they are sleepy during the day. Advanced sleep phase syndrome is also possible where the child falls asleep in the evening and then wakens very early. In severely learning disabled children (especially those with visual defects) the sleep-wake cycle may be very irregular, or not 24 hours in duration, because the child has not been able to properly appreciate the difference between night and day and associated activities. Night time attacks (parasomnias) There are a range of unusual behaviours which occur during sleep or are made worse by sleep (otherwise known as the parasomnias). Different parasomnias are linked to different stages of sleep and therefore usually occur at different times during the night. They are more common in childhood and adolescence and may result in significant distress to the child and/or other family members. The most commonly occurring parasomnias are outlined below. Parasomnia Usual timing Rhythmic movement disorders Sleep onset Arousal disorders First third of the night Nightmares Last third of the night Bedwetting Any time of the night Parasomnias and their usual timing during sleep Rhythmic movement disorders usually occur at the onset of sleep but may also occur when the child wakes during the night and tries to return to sleep. They include head banging, head rolling or body rocking. They are usually interpreted as a soothing rhythmical activity which aid sleep onset. In most cases, no treatment is necessary, parents can be reassured, and the child outgrows the behaviour. However, where there is a risk of injury, protective measures or behavioural techniques are appropriate. Similar rhythmic movements during the day are usually indicative of more serious psychological disturbance, in which case treatment of the underlying problem is required. Arousal disorders are parasomnias which occur during the deeper stages of sleep. They are known as "arousal disorders" because their occurrence is associated with a partial arousal from these sleep stages to a lighter stage of sleep (but without actual waking during the episode). They are most common during the first third of the night where deep sleep is most abundant. During these partial arousals, the individual remains asleep during the episode although older children, adolescents and adults may wake briefly at the end. They include confusional arousals (mainly in young children), sleep walking and sleep/night terrors. During confusional arousals, the child usually moans or fumbles in a confused manner, cries or even screams and may thrash or kick perhaps for 15 minutes or longer. Typically, treatment is not necessary as the episodes stop by themselves with time but explanation and reassurance for the parents that the child is not actually distressed is often required. Sleep walking episodes can range from wandering aimlessly to agitated attempts to "escape". The episode usually terminates spontaneously and the individual returns to bed and continues to sleep. The individual will usually have no memory of the event the next morning. Sleep walking is most prevalent between the ages of four and eight years. The environment needs to be made safe to avoid injury during sleep walking episodes. Sleep (or night) terrors are characterised by a sudden arousal, with a piercing scream or cry and terrified expression. The child usually sits up in bed with staring eyes, very rapid pulse and profuse sweating. More dramatic episodes can involve running about as if trying to escape from something. The episode may last from one to several minutes before it stops of its own accord and the child returns to sleep. As in other arousal disorders, parents are encouraged not to awaken the individual during an episode because if awoken, they are likely to become confused and frightened. It is best to let the event take its natural course. Nightmares are frightening dreams that usually awaken the individual. They usually occur during the last third of the night when dreaming sleep (Rapid Eye Movement or REM sleep) is most likely to occur. They may be caused by frightening experiences including TV, bedtime stories or more serious psychological trauma. They are more common in childhood than adulthood. Nightmares and sleep terrors are sometimes confused with each other. However, a number of features differentiate the two. In the case of nightmares, parents are usually able to comfort the child. This is not the case with night terrors where the child is not awake during the episode (although older children may wake at the end of it) and may well resist any attempts to comfort. In addition, nightmares usually occur during the second half of the night when REM sleep is most abundant whereas sleep terrors tend to occur towards the beginning of the night when deep sleep is mainly seen. Bedwetting is a common problem in childhood. It can occur in all stages of sleep. It may be the result of an underlying physical abnormality, for example a urinary tract infection, diabetes, epilepsy or possibly sleep apnoea, in which case treatment of the underlying disorder should resolve the problem. In some cases, it may have an emotional basis but often it is simply caused by a delay in bladder control. Behavioural techniques such as the pad and buzzer are generally the preferred form of treatment. There are a number of other parasomnias which do not occur during any particular sleep stage. The most common are teeth grinding and sleep talking. Sleep related breathing disorders (obstructive sleep apnoea syndrome) Recent research has shown that children with Down syndrome are more prone to sleep related breathing disorders (in particular obstructive sleep apnoea syndrome) than children in the general population. This is due to various anatomical characteristics associated with the condition including muscle laxity, enlarged tonsils and adenoids and a smaller upper airway. Obstructive sleep apnoea occurs as a result of the upper airway becoming blocked repeatedly during sleep. Each time this occurs, breathing stops for a time and the child is then woken up by the struggle to breathe. These interruptions in breathing (apnoeas) may occur hundreds of times during the night causing sleep disruption. It is the frequency of these events which determines the severity and whether treatment is necessary. Nocturnal features include combinations of loud snoring, restless sleep, sleeping with neck extended, other unusual sleeping positions, coughing or choking noises, observed apnoeas, excessive sweating and possibly bedwetting. Daytime consequences include excessive sleepiness, behaviour changes and impaired concentration and attention. There is evidence to suggest that this problem is under-recognised in the general population and probably more so in individuals with Down syndrome. More will be said about this problem in children with Down syndrome and its treatment later. Management of sleep disorders The method of management for a sleep problem depends on the specific sleep problem present. Different problems require different approaches. A sleep problem with a physical cause, for example obstructive sleep apnoea, will require a very different approach to say, a settling or waking problem. Methods for treating problems associated with sleeplessness will be described first and methods for treating sleep related breathing problems will be outlined towards the end of the section. Basic information about sleep This is useful whatever the sleep disorder. Reassurance can also be very helpful especially in “developmental” sleep disorders of childhood, for example, bedwetting, night terrors, sleep walking, which are not usually associated with psychological or other problems and often usually disappear with time. Medication Medications for sleep problems are among the most commonly prescribed drugs by doctors. This is somewhat surprising as they are of limited use in the treatment of children’s sleep problems. For some children they may work but for others they make the situation worse and keep child awake during the night in an irritable and “grizzly” state. The best current advice is that they are best reserved for short term use where really necessary, for example where parents themselves need a good night’s sleep. Sleep hygiene Sleep hygiene refers to general advice that may help to promote a good sleep pattern. Advice regarding children is summarised in the table. Behavioural approaches More specific and individually designed behavioural and cognitive approaches may be needed for some sleep disorders. These techniques have been shown to be particularly effective in the management of childhood sleeplessness. An overview of these approaches is given below. As stated earlier, many of the disorders of sleeplessness occurring in children are a result of parents’ unwillingness to set limits and/or the child never having learnt to fall asleep on their own. Behavioural techniques aim to change the way parents react and deal with the problem. In their book on managing children’s sleep problems, Jo Douglas and Naomi Richman identify four techniques for change: extinction, positive reinforcement, shaping and graded approaches and antecedent conditions and discrimination learning. Details of their book are given at the end of this article. Extinction and ignoring Extinction involves the removal of any rewarding responses to children’s undesirable behaviours, for example, ignoring a child who cries in the night. Although this can be a very effective and fast approach, it can be very upsetting to parents and children. Also, unless used consistently, it can do more harm than good as partial reinforcement of long periods of crying can make the behaviour more resistant to extinction. A variation on this theme, which is often more acceptable to parents is the controlled ignoring or “5-minute checking method” where parents settle their child with the minimum amount of interaction and go then go back to check their child and carry out the process again every five minutes until the child falls asleep on their own. This technique can be used with the child who will not settle, wakes repeatedly or comes into his or her parents’ bed. Parents are warned that the problem can get worse before it gets better and parents’ own sleep may be disturbed initially. Perseverance and consistency are the key to success. Positive reinforcement Positive reinforcement aims to increase desirable behaviour by rewarding it. This can be used with children who have a verbal age of around three years and above. Star charts, farmyard charts or anything else that the child finds rewarding can be used. The desired behaviour is made clear to the child so that they know exactly what is required of them in order to achieve the reward. Douglas and Richman recommend that reinforcement should be given for the existence of a behaviour rather than its absence, for example staying in own bed rather than not getting into parents’ bed. They also recommend that a reward should never be taken away once it has been earned, and that when the desired behaviour has been agreed, the criteria should not be changed nor the criteria for success moved. Positive reinforcement can be used for the child staying in his or her own bed, going to bed co-operatively and not getting up too early. Shaping and graded approaches Shaping and graded approaches can be much more acceptable to parents. They involve teaching the child the desired behaviour in small steps. Examples include gradually moving bedtimes earlier on successive nights for the child who will not settle until late at night, or gradually distancing the parents from the child at bedtimes so that the child eventually falls asleep on his or her own. These techniques require careful monitoring so that there is no regression to the earlier problems. They are sometimes much slower than some of the other techniques and so greater amounts of guidance and support are needed from someone advising the parents. Antecedent conditions and discrimination learning This involves teaching children to associate sleeping and settling on their own with certain events and conditions. Many sleep problems stem from a child associating sleeping and settling with a parent’s presence. As a result the child will have difficulty settling himself if he awakens and the parent is not present. In such cases, it is necessary for the child to learn to associate other conditions with falling asleep. The daytime nap can be used as an opportunity to teach him to fall asleep on his own. A familiar toy can be introduced at this time and the child should be put into bed when drowsy but fall asleep in his own bed rather than in his parents’ arms. In this way, the child will begin to associate his/her own bed and perhaps the toy with falling asleep and this will carry over to the night making re-settling easier. Establishing a bedtime routine is another example of antecedent learning. If the routine is kept relatively constant and the child knows that they are expected to settle to sleep at the end of the routine, they are more likely to comply. Douglas and Richman recommend that the routine should not be too long so that the first part of it becomes disassociated with going to bed and falling asleep. They also say that it should have a definite end and continuing demands for more stories and the like should be ignored. Douglas and Richman point out that the techniques can be used in conjunction with each other in an effective way. For example, for a child who will not settle at night, a bedtime routine can be introduced, 5-minute checking method can be used to teach the child to fall asleep on their own and a star chart can be introduced to reward the desired behaviour. These techniques have been shown to be effective in the management of sleeplessness in children from the general population and children with learning disabilities. In one study, health visitors were trained to use behavioural techniques for the management of sleep problems in 60 children with severe learning disabilities. The programme ran for 12 to 16 weeks. At the end of the programme, 80 per cent of parents reported a marked improvement in sleep, 16 per cent reported a moderate improvement and 4 per cent a slight improvement. 85 per cent maintained their progress six months later. The management of obstructive sleep apnoea syndrome This problem requires a medical approach as the cause is physical and consultation with an Ear, Nose and Throat (E.N.T.) or other respiratory specialist is necessary. This will require referral by a G.P. Where children in the general population are concerned, the most usual cause of obstructive sleep apnoea syndrome is enlarged tonsils and adenoids and therefore the most effective treatment is their removal. In children with Down syndrome, the situation is more complicated and each case needs to be investigated on an individual basis by the specialist. The cause of airway obstruction occurring may vary from one child to another. In some children removal of the adenoids and tonsils may improve the situation sufficiently, but in others it may not. Where it proves ineffective, there are other surgical interventions which may be appropriate. For adults in the general population, the most common and effective form of treatment for obstructive sleep apnoea syndrome is a procedure known as Nasal Continuous Positive Airway Pressure (or NCPAP for short). This involves the individual wearing a mask which is placed over the nose and mouth during sleep through which air is pumped continuously to keep the airway open and therefore to prevent obstruction. Individuals find that the beneficial daytime effects outweigh the inconvenience of wearing the mask. It has been used successfully in a preliminary way with children including some with Down syndrome. However, as one might imagine, there are often problems with compliance, especially if the procedure cannot be properly explained to the child. This form of treatment is not generally available for children in this country. Clearly more research is needed into effective forms of management in children with Down syndrome. Research at the Sarah Duffen Centre As many of you will already know, research into sleep problems in children with Down syndrome has been carried out for the past five years at the Sarah Duffen Centre. This research has been funded by The Portsmouth Down Syndrome Trust. The main aim has been to gain a greater understanding of the occurrence and nature of sleep problems and behaviours in children with Down syndrome compared with other learning and non-learning disabled groups and to investigate the psychological associations of these problems. The research has been conducted in two distinct phases. In the first phase, the prevalence and range of sleep disorders was investigated in a group of 91 children with Down syndrome aged 4 to 16 years using parental questionnaires. The findings were compared with a group of their non-learning disabled brothers and sisters, a group of children from the general population and a group of children with other forms of learning disability of various aetiologies. Questionnaires were sent via schools in Hampshire. As expected, overall children with Down syndrome and children with other forms of learning disability showed a significantly greater number of sleep disorders than the siblings and children from the general population. However, different patterns of sleep disorders were seen in the two groups of children with learning disabilities. Where the children with Down syndrome were concerned, there appeared to be at least three different types of sleep problems. These were, firstly, those where the problem was primarily one of getting to sleep (sleep onset problems), secondly, those where the problem was characterised by disturbances during the night i.e. nocturnal wakings and restlessness (sleep maintenance problems), and lastly, those where the problem was primarily one of disordered breathing during sleep i.e. obstructive sleep apnoea syndrome. Sometimes combinations of these problems occured. Parents of children showing any one of these types of sleep problems were significantly more likely to report a range of daytime behaviour problems and excessive daytime sleepiness in their child and also increased stress levels themselves. The children with sleep maintenance problems showed the greatest degree of daytime behavioural disturbance. The second phase of the research consisted of a series of studies investigating sleep, breathing and psychological function in more detail. Overnight recordings were carried out on 31 local children with Down syndrome including video and audio recording and activity monitoring during sleep. Information on the children’s daytime behaviour was collected from parents and teachers. Some of the main findings were that parents ratings of restlessness and snoring were generally confirmed by objective measures and that these measures and overnight changes in blood oxygen levels showed significant associations with daytime behavioural disturbance and attention skills. Overall, the findings demonstrated the high incidence and wide range of sleep problems in children with Down syndrome and the associations of these problems with children’s daytime functioning and mothers’ stress levels. The findings suggest that treatment of the sleep disruption, be it physical or behavioural in origin, may result in improved psychological function in children with Down syndrome. More focused studies are planned to make clear how best to assess the precise nature of each child’s sleep and psychological problems and what the best form of treatment might be. I would like to take this opportunity to thank all the children and parents who took part in this research, and also the teachers you helped in the organisation. I really enjoyed meeting all the children and their families and am very grateful for all their help. The full results of the research will be published in a future issue of the journal Down Syndrome: Research and Practice published by the Sarah Duffen Centre. Anyone wanting more information on the research can contact me anytime at the Centre. General advice for improving children’s sleep hygiene * The sleeping environment should be physically conducive to sleep i.e. quiet, dark, avoiding extremes of temperature, without disturbance from other people and the bed should be comfortable. * Sleeping environment should be familiar, comforting and relaxing and associated with sleep rather than play or entertainment. * The bedroom should not be a place of punishment or have other negative associations. * There should be a consistent evening and bedtime routine ending with the child relaxed and ready for sleep. * Bedtime and waking up time should be consistent including weekends and holidays (within reason). * The child should be put to bed when tired. * Children should learn to fall asleep on their own without their parents being present. * A pattern confining feeding to daytime and sleeping at night should be promoted early in development and maintained. * Hunger at bedtime should be avoided but excessive fluids at bedtime or during the night or heavy meals later at night should also be avoided. * Parents should avoid reinforcing settling and waking problems by giving in to demands for drinks, food, more stories etc. in an attempt to avoid confrontation. * Naps in young children should not be too early or late in the day, too many or too few. * Boisterous play or other arousing activities (including frightening videos or stories) should be avoided in the hour or so before bedtime. * Stimulant containing drinks (cola, coffee, chocolate, tea) should be avoided for several hours before going to bed and excessive amounts avoided during the day.