Cri Du Chat Syndrome Support Group

Sleeping Difficulties

Sleep problems in CDCS children are very common indeed, occurring far more frequently than in the general population of children. Difficulties settling at night, waking too early in the morning and, especially waking repeatedly through the night, represent a severe cause for concern for almost 50% of parents of the parents who participated in our survey. A quarter of the children had settling problems, but nearly twice as many also woke repeatedly through the night. Furthermore, although the sleep problems were commonly longstanding being usually present from early infancy, few parents reported actually seeking any help. Few professionals and particularly GPs and Health Visitors receive any training in this area despite the fact that children’s (and adults’) sleep problems are commonplace. This is a serious situation because chronically disturbed sleep for children can result in major daytime behavioural problems such as aggressive behaviour and overactivity and can significantly interfere with learning. For parents, the effects can also be severe resulting in stress, depression, relationship difficulties and also not coping with the many needs and demands of their disabled and other children. Indeed, in studies examining the burden of care faced by parents of handicapped children, chronic sleep problems always figure prominently and, most seriously, are the most important reason for parents not coping with their children and requesting help from Social Services (respite care, foster care and even adoption!).

Well, what can be done about this? Of course, most babies, with or without CDCS, do indeed cry regularly at night but it may be more beneficial to allow some crying, in the hope that this will be a natural prelude to sleep, before rushing to comfort them. Parents could help a young infant to get into a good sleep pattern by quickly establishing a regular settling routine in which the baby or infant is put to sleep on its back in a quiet darkened room (or part of a room) which is safe, warm and comfortable. By doing this, infants should quickly settle and learn to fall asleep without any fuss by 3 to 6 months of age. However, if sleep problems persist into childhood and are characterised by an ingrained pattern of not settling, waking repeatedly through the night or waking up too early, then try a routine known as: “SLEEP”.

S.L.E.E.P.

• Settle your child as quickly as possible at a set time into a safe and secure bedroom and wake him or her up at a set time in the morning (use an alarm clock)
• Leave your child after settling unless you suspect physical illness or danger
• Even if he or she cries out for attention
• Even if he or she screams or does anything else to demand your attention
• Persist and don’t give in: this will teach your child quickly to get into a healthy sleep pattern and you will notice the benefits for everyone!

No negative effects have been reported following the use of this somewhat dramatic technique and this approach can work very quickly (a few nights). Furthermore, it commonly results in reduced levels of stress for parents and conspicuous improvements in children’s daytime behaviour and capacity to learn.

However, if you are not prepared to ignore your child at night, there is an alternative. You can try to remove your presence from him or her in gradual stages: this involves initially lying on the bed until they fall asleep for a few nights, then by the bed, then near the bedroom door etc. This can be highly effective but usually takes much longer than the technique described above. Ask a trusted friend or Health Visitor to help you with this approach.

A small minority of children will not respond to the techniques described previously for a variety of reasons. In these circumstances it is best to stop, reflect upon why the approach did not work (for example, a parent who eventually “gives in” to their child’s insistent nocturnal demands!) and then to try again when you feel it would be the best time to do so. Some children, and particularly those with visual impairments or other problems like autism, may benefit from taking capsules (2 to 12 milligrams) of a sleep-inducing agent called MELATONIN half an hour before their usual bedtime. This is a natural hormone that promotes sleep in humans and most other animals. It is effective in about two thirds of patients and is to be preferred to traditional “sleeping pills” such as “Vallergan” and “Phenergan”, that can cause many unwanted problems through side-effects. Melatonin should only be prescribed by doctors who are experienced in its use, such as community paediatricians and child psychiatrists, and only for a fixed period. Melatonin levels in the body can also be boosted naturally by exposure of the child to daylight in the mornings and also by them eating foods rich in melatonin, or the substance that the body makes it from, shortly before bedtime. These foods include oats, sweet corn, bananas and milk. A banana “smoothie” or a bowl of porridge or corn flakes may just do the trick! A Child Psychiatrist or Psychologist may also be able to help you with your child’s sleep problems: your GP or Health Visitor can arrange this.