K was a 3 year old boy who had Down syndrome. He was taken to ED with diarrhoea and vomiting, where he was found to be pyrexial and tachycardic. His parents felt he was not his normal self.
Soft Signs of Illness
Soft signs are those things that families and carers may notice and which may alert them to the fact that someone is unwell. Soft signs may be quite specific to an individual person, for example a particular person may become pale, not want to eat their favourite meal and may become less chatty than usual when they are ill, whilst another person may become more agitated, may pace around and may not be interested in their favourite TV show. If a family member or carer reports concerns about soft signs, its important to pay attention.
Diagnostic Overshadowing
This occurs when symptoms and signs of illness are put down to an underlying condition. For example, a person may be quite restless and agitated, and this may be attributed to their learning disability or the fact they are autistic, without considering whether this is normal for them. Similarly, someone may be quiet and withdrawn, and this again may be attributed to them having a learning disability and communication differences, when in actual fact they would usually be very active and talkative. Its important, again, to find out how someone is when they are well, in order to know how unwell they may be now.
Sadly, K was not recognised as being critically unwell until he had moved from ED to the Childrens Assessment Unit, where he arrested and died due to pneumonia and sepsis. His parents felt they were not listened to when they tried to explain that K was not well. The coroner described long periods of time without observations, delays in investigation and treatment and a failure to administer antibiotics until shortly before he died.
You can read more about Down syndrome from an ED perspective here.