Pain and Discomfort

Pain and Discomfort

Many people with Cornelia de Lange syndrome are not able to communicate that they are experiencing pain and discomfort.  Consequently, they may find other ways to let you know that they are in pain.

There is some evidence that behaviours that challenge, in particular self-injurious behaviour can occur in response to painful medical conditions and discomfort. However, this does not mean that other forms of behaviours that challenge are not influenced by pain and discomfort.  For any sudden outbursts of any form of behaviours that challenge that appear ‘out of the blue’ pain and discomfort should be taken into consideration when trying to identify a cause. For information on how to identify pain in children with severe intellectual disabilities and/or communication difficulties please click here.

Examples of medical conditions which have been found to lead to self-injurious behaviour in children and adults who have intellectual disability include otitis media (middle ear infections), skin infections and irritation, and gastro-intestinal reflux [2].  Gastro-intestinal reflux is very common in Cornelia de Lange syndrome.

The role of peripheral sensory neuropathy

There is some evidence that individuals who have Cornelia de Lange syndrome might have a peripheral sensory neuropathy.  This disorder can have two important effects that might be relevant to self-injury.