<p>Dr Dawn Adams describes the link between pain and behavioural difficulties in children with genetic syndromes.  It is always important to make sure behavioural difficulties are not underpinned by pain.</p>

Dr Dawn Adams describes the link between pain and behavioural difficulties in children with genetic syndromes.  It is always important to make sure behavioural difficulties are not underpinned by pain.

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Key Fact

Any sudden changes in a person's behaviour should alert you to the possibility that they are experiencing pain and discomfort.

Health Issues in Cri du Chat Syndrome

Parents and carers have told us that being presented with a long list of health difficulties can be daunting.  However, they also reported that having this list available can be reassuring and can help them to watch out for early warning signs.  The key message here is that children with Cri du Chat syndrome may be prone to some health difficulties; however, with appropriate support and regular health checks with an informed professional, a lot can be done to reduce the impact on an individual’s well-being. 


Vision and Hearing

Most individuals with Cri du Chat syndrome do not have difficulties with vision.  When visual problems do occur they include near sightedness, wobbly eyes, and optic nerve abnormalities

Hearing is a relative strength for individuals with Cri du Chat syndrome because difficulties hearing are uncommon.  However, between 70-80% of people with Cri du Chat syndrome show hypersensitivity to noise (hyperacusis).  While hearing is a general strength, it is important to note that middle ear infections (otitis media) are common in individuals with Cri du Chat syndrome and this can affect hearing.

 

Mobility

Individuals with Cri du Chat syndrome will have some degree of mobility, and many are able to walk, although almost all will experience co-ordination, balance and motor-control difficulties.

Curvature of the Spine

Many individuals with Cri du Chat syndrome are prone to developing a curvature of the spine (scollosis).  This can become more apparent with advancing age.  This should be regularly monitored in all children and adults with Cri du Chat syndrome, particularly during puberty when children have a growth spurt.

 

Constipation

It is reported that around 7 out of 10 children and young adults have significant problems with constipation, and a high-fibre diet may help with this.  

It is always important to ensure that any behaviours that challenge observed are not underpinned by pain.

For more information on the signs of pain in children with severe intellectual disability and/or communication difficulties please visit the Cerebra webpage.

 

Peripheral Sensory Neuropathy

There is some evidence that people who have Cri du Chat syndrome might have a peripheral sensory neuropathy.

This disorder can have two important effects that might be relevant to self-injury.  First, pain may not be experienced in the ‘normal’ way; painful stimuli may not be experienced as painful. Secondly, people may experience unusual sensations in their hands and arms. These sensations are described by some people as pins and needles (dysaesthesia) or a mild burning sensation.  It has been suggested that peripheral sensory neuropathy may be associated with behaviours that challenge underpinned by pain.

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