Changes with Age in Cri du Chat Syndrome

Information on changes with age is one of the things families regularly ask about.  To date, only a few research studies have looked at changes with age in people with Cri du Chat syndrome.  Often these research studies only include a small number of people so the findings might not be relevant to all people with Cri du Chat syndrome.  These studies have looked at physical changes more often than behavioural changes. 

Physical Characteristics

Some researchers have noted that with changing age the facial characteristics associated with Cri du Chat syndrome become less striking, making clinical diagnosis more difficult.  Some individuals have been noted to have premature greying of hair.

Health Related Issues

Growth delays continue into adulthood along with co-ordination difficulties.  Adults with Cri du Chat syndrome tend to stand and move with a wide gait (legs set further apart) and bent knees. 

Dental problems remain an issue in adulthood so regular dental examinations are essential.

Increased muscle tension and less flexibility (hypertonia) have been noted in older individuals with Cri du Chat syndrome.  This is in contrast to relaxed muscle tension noted in younger individuals.

Behaviour and Mood

There are some reports that challenging behaviour reduces in some individuals with age.

No decreases in mood, interest or pleasure in the environment have been noted with age in children with Cri du Chat syndrome.  Individuals with Cri du Chat syndrome are consistently reported as affectionate.

It is reported that attachment to objects may reduce over time.

Puberty

Individuals with Cri du Chat syndrome typically experience puberty at the usual time. In men, testes are usually smaller but otherwise the development of the testes and sperm tend to be typical. Parents and children with intellectual disabilities may require more support and advice around puberty. A range of resources, guidance and information can be found at the Family Planning Association. They have a general helpline or you can use the search box to search for resources for individuals using the term ‘learning disability’

Further research - changes with age

A study is currently being carried out at the University of Birmingham to examine changes with age in people with Cri du Chat syndrome.  The results of this study will become available towards the end of 2016.  To read more about this research click here.