Diagnosis

LKS is a clinical diagnosis, which means it is made on the basis of the child’s history and assessment. The core features are a history of normal early development followed by loss of language skills, often in association with mild observed seizures and behavioural changes. There is no specific test, although EEG recordings can be very helpful, especially in the active phase of the disease. MRI scans are usually normal.

The condition is rare and may not be thought of initially. It is common for children to be investigated for deafness, autism, selective mutism, verbal dyspraxia or behavioural problems before the diagnosis is made.

Your child will have an initial medical assessment, including examination. The physical examination is usually normal apart from occasional mild co-ordination or other movement problems. The doctor may request tests to check for various alternative diagnoses. The tests are typically normal, apart from the EEG.

There will also be assessments of your child’s development across different areas of learning, particularly language. It is important to record your child’s current skills as a baseline, which can be used to gauge the effect of the disease and any medical treatment or therapy, in the future. This assessment will also allow the therapist to identify appropriate intervention(s) for your child (for example, speech and language therapy). Your child should then have regular assessments to monitor changes in skill profile. This information will be important for making decisions about medical, educational, behavioural and therapeutic management.

It is important that your child is assessed at an early stage by a multidisciplinary team including medical, speech and language and clinical psychology services. This enables your child’s full profile to be assessed and considered in the management programme, and a co-ordinated approach to be adopted by all people working with you and your child.

The process of diagnosis of LKS may include various tests, such as: