Useful Definitions for cri du chat syndrome

Genetic Counsellor: This is a specialist whose role is to estimate the probability of recurrence of a genetic disorder, and to assist in deciding what the appropriate action would be. However, the final decision will always be left to the family

Genetic Nurse: This is a nurse with specialist knowledge in genetics and is typically based within a hospital Genetic department. One of their main roles is to talk and discuss with families about the syndrome.

Health Visitor: There are two types of health visitor: (1) The Health Visitor (HV) who is involved in all children who are born. They have the responsibility of checking the child’s progress from birth. This includes immunisation and pre-school checks as well as advising on feeding and problems associated with the new-born. (2) The Specialist health Advisor (SHA) who tends to look after the welfare of children with special needs only. Her remit is to monitor the child’s progress throughout childhood which includes attending meetings and reviews about the child. They will also look after the welfare of the parents, make sure that they are getting the right benefits, introduce them to a special playgroup, provide free nappies when they are eligible etc. The SHV tends to be more involved than the usual HV.

Occupational Therapist: This is a specialist therapist who works with people of any age to promote their independence. In hospitals they are an important part of the rehabilitation team. In the community, they work on trying to resolve practical problems. They can also provide essential equipment such as Buggies, special high chairs, potty chairs and helmets for children who fit or fall easily.

Paediatrician: This is a medically qualified doctor who specialises in babies and children. If your child has any ongoing problems they are usually kept an eye on by the paediatrician. At school age the child will have yearly checks with the Community Paediatrician.

Psychiatrist (child): This is a medically qualified doctor who specialise in diagnosis and treatment of various behavioural and psychological problems in children.

Psychologist (education): This is a specialist psychologist who assesses the educational needs and development of children with special needs.

Speech and Language Therapist: This specialist therapist has a varied role. They will assist in helping the child/adult to be able to communicate. This can take various forms i.e. speech, signing, symbols and electronic machines. They can also offer advice on feeding techniques.

http://www.criduchat.co.uk/usefuldefinitions.html