Cri Du Chat Syndrome Support Group

Early Developmental Milestones

Most children with CDCS will reach their developmental milestones later than typically developing children but with the help of early therapeutic interventions, most children will eventually reach major milestones including learning to sit up, crawl, walk, and eat independently. In the section below we describe some of the main difficulties you might encounter with your child as they begin to reach towards their milestones. What is important to remember is that every CDCS child is unique and not all children will perform at the same level at exactly the same time.

Motor difficulties

The majority of CDCS children will experience some problems in motor control particularly in skills that require the use of motor co-ordination (e.g. walking, dressing and feeding self) and fine motor skill (e.g. holding a pencil). However, contrary to early advice that children with CDCS would never walk and have only limited mobility, there is now growing evidence to indicate that the majority of children will acquire some degree of mobility and dexterity. For example, many children are able to sit independently and to feed themselves to varying degrees. Walking is also achieved by many CDCS children, although almost all will experience co-ordination problems which make them appear overly clumsy.

Washing, dressing and undressing

Less well developed are skills that require fine motor control and planning such as those involved in washing, dressing and undressing. Many children with CDCS find it difficult to master these skills and often require considerable help from parents. However, these skills do appear to be sensitive to age and many young adults, although not able to perform them totally independently, need only minimal help. You will probably find your child is more than willing to help with washing and this should be encouraged from an early age, even if it is just letting them place their hands into a bowl of water and splashing. Washing hair and using soap are skills that may take much longer to develop. In terms of dressing, encourage your child to put items of clothing on him/herself, even if it’s just very basic items, and again start doing it from an early age. The fine motor skills needed for zips and buttons, however, are going to be beyond most children’s ability so don’t expect too much! Also, allow extra time for dressing and undressing so your child doesn’t feel rushed and you then don’t feel tempted to simply do it yourself to save time! For these skills, Occupational Therapists can be very helpful. They can assess and provide exercises for your child in the areas of co-ordination, balance and gross and fine motor skills, and can advise on building up skills in dressing, washing, eating with a knife and fork etc. Where appropriate, your GP may be able to refer you to an Occupational Therapist.

Toilet Training

The majority of CDCS children will experience problems with wetting and soiling and few will have achieved bladder and bowel control by early childhood. You will find that some CDCS children are toilet trained by the age of four or five years while for many children it takes much longer. So don’t feel discouraged if your child is still in nappies at seven or more years old, they are not going to be the only one. Toileting starts with the task of getting your child to associate the lavatory with urination and defecation. This is best achieved by sitting the child comfortably on the toilet for a short period (maximum of a minute or two) after every meal of the day. This is the time when food in the stomach naturally triggers a reflex in the lower bowel to contract and defecate. Should this happen then praise and rewards will help to reinforce the habit. However, praise and rewards should be given initially for simply sitting on the toilet. If your child has mobility problems the lavatory may have to be physically adapted to allow comfortable sitting. Even a footstool or box will help most children to use a normal lavatory satisfactorily. If your child has constipation problems they may benefit from high fibre diet, brief courses of laxatives and, very occasionally, enemas. You might also find that your child is “dry” at school but not at home. If this is the case, then find out the routine or procedure your school uses and follow it at home. District nurses, specialist health visitors and occupational therapists provide invaluable support and advicewith these problems. More complex problems may require the help of specialist continence nurses, paediatricians, psychologists or psychiatrists.